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Mom dying in own filth and no help in sight

Mar 06, 2010 - 44 comments
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end of life



I posted this on the Caregiver Community forum, and now pasting it here in the hope that someone might respond who has experienced a similar situation.
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My 76-year-old mother is destroying her life as well as mine and my siblings.  Her coping method with any medical problem has always been to ignore it, treat with over-the-counter meds and finally deny its very existence.  Last year she became ill enough that she was forced to face her numerous medical problems, which are:

1.  Severe scoliosis and spinal stenosis.  Her right hip is several inches higher than the other.  She postponed surgery for so many years that the neurosurgeon doubts he can help her.  The discs from L1 through T5 are crushed to the point that they obscure her spinal cord on the MRI films.  As predicted, Mom is now becoming incontinent and can barely walk more than a couple steps.  Now she won't eat for fear of not making it to the bathroom, but denies the problem to medical professionals.

2.  Uncontrollable stomach and duondenum bleeding.  She has hundreds of aterio-venous malformations (AVM) that require 2 units of packed cells to be transfused roughly every two weeks, more or less.  

3.  Self-medicating with over 20 advil a day resulted in a destroyed stomach lining, about which nothing can be done.

4.  Abdominal aortic aneurysm recently discovered on a pre-op x-ray.  That and low hemoglobin right after a transfusion resulted in cancelation of the surgery.

5.  Just enough dementia to result in shrieking outburst if anyone says something she disagrees with - which is just about anything.

My father died in 1994 which forced both of my parents to finally prepare a will.  After his death, my mother saw an attorney and updated her papers.  She purposely left out a general power of attorney.  I was already noticing signs of dementia at that time.  The one piece of paper we need to help her has tied our hands completely.  Because Mom cons the doctors into believing her fairy story that she can live alone independently, (despite the family trying to inform them otherwise) she is human wreckage dying alone in her own filth.

Mom refuses to allow us to help in meaningful ways.  She can't get in and out of the bathtub and refuses to allow any alterations to her home to improve her hygiene and mobility.  She refuses to use a walker and has fallen several times because she can't feel her feet.  She can't stand long enough to even prepare microwave foods and her diet is atrocious despite family members bringing her food.  In a nutshell, Mom cannot face the fact that she is incapable of caring for herself, and won't allow any improvements in her sitution because that would mean acknowledging how very ill she really is.  She won't allow us to get her a motorized chair or install ramps over her raised entryway floor that block access to the bedrooms and bathrooms.

Ten days ago Mom shrieked that she had to go to the hospital because she couldn't eat, walk and was incontinent.  No sooner do we see the triage nurse than she denies the problems.  She was admitted because she needed a transfusion, and could have had her back surgery had she remained in the hospital long enough.  But no.  The next day she screamed and yelled and demanded to go home.  Apparently Mom checked out AMA.

The next day we discover Mom's hemoglobin down to 7.8.  She had already bled out the entire transfusion and then some.  Back to her usual out-patient place for another transfusion which took me 3 more days to set up.  In the meantime, Mom is bleeding to death.  I managed to get her cardiologist to look at the x-ray while she was getting transfused.  When he went down to talk to her, he wanted to admit her for further evaluation of the aneurysm.  BOOM!  Mom threw a fit of epic proportions.  I got my brother and sister to meet me at the hospital and we asked for a psych consult - again.  Again, the hospital refused.  This time saying Mom had to be an inpatient for several hours before calling in a shrink.  We called social services and were informed that we could not infringe on Mom's civil rights even though her irrational decisions are killing her in front of our eyes.  She suggested we report her to Adult Protective Services.

I spent all afternoon last Saturday writing a 9-page report to APS.  The State moved quickly - I'll give them that much, but when the shrink showed up at her house he said her dementia wasn't bad enough to remove her rights.  That was my last attempt.  I don't know what else to do.  Mom won't allow an aide to help her.  The one time I arranged for one Mom fired her after the first day.  She needs skilled care and a nursing home is out of the question in her mind.

I am disabled myself, and because I don't work I am the default caregiver.  I have to fight both my mother and her numerous doctors and the medical system in general to keep her alive.  The stress is literally killing me now.  I can't sleep, grind my teeth unconsciously to the point of migraines, and now add skyrocketing blood pressure and chest pain to the mix.  I'd probably be dead by now if it weren't for my pain shrink.  Last weekend I tried to take a break from it all and told my siblings that I was unplugging my phones.  They thought it was such a good idea they did the same, leaving Mom completely alone and hysterical for two days.  I got to deal with the fallout.

When you add up all the things that mom refuses to do, the only option left is death.  (But she has civil rights which must not be infringed.)  The real horror is that Mom really doesn't want to die.  I see flashes of my "old" mother in there, and she's a terrified old woman facing death in a great deal of pain.  Denial is the only thing holding her together at all at this point.

Has anyone else been in a situation like this and had their hands completely tied?

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by specialmom, Mar 06, 2010
Oh, I so feel for you.  I have not been in that situtation myself.  Our family watched my mother in law who was in grave denial and refusing hospice and help as she was dying of cancer.  But it was not to this extreme.  I'm so sorry.  I think you need to have a long talk with your siblings.  This is taking such a toll on you.  There needs to be more of a schedule in which they help.  You shoud have every weekend off from care if they are working and feel less able to help due to work schedules during the week.  I think it is not fair for one sibling to shoulder so much burden.  

My mother passed years ago at a young age.  I often think about how horrific it would be to see her deteriourate before my eyes.  That is terribly painful.  And while I think you should have peace of mind as you have tried to be so helpful and do what you can, I know you don't.  It is hard to feel that way when you are desperately hoping to help your mother.  In the end, however, you can only do so much.  

I would continue to contact adult protective services.  They do have guidelines to determine when they will intervene and they are on the conservative side.  But your mother is in grave danger here.  I'd continue to document everything.  Pictures, tape recorders, anything you can do to stress how out of control the situation is.  

I so hope it gets better.  I'll say a prayer for you and your family.



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by Jaybay, Mar 06, 2010
If this story isn't a lesson in end-of-life planning, I don't know what is.  

I've tried the scheduling route with my siblings, but it really boils down to the fact that they don't want to take time out of their weekends to deal with mom.  Who does?  It's a thankless job to try to help and then get screamed at for the attempt.  If Mom could have gotten out of her wheelchair during the last circus at the hospital, she would have punched my sister while screaming that she hates her children and wishes we were never born.  The only thing Mom wants is for us to sit there and affirm her delusions that nothing is wrong.  She has blocked every avenue leaving a hopeless situation with death as the endgame.

I truly do understand my siblings keeping their involvement to a minimum.  They have children, and I well remember how precious those weekends are.  If they don't step up though, I'm afraid they're going to lose both their mother and their sister.

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by ginger899, Mar 06, 2010
Dear God, Jaybay, I really feel for you right now, and for this terrible situation. I wish, I WISH I could say or do something to help. Reading this made tears come to my eyes.

There are some similiarities to what happened with my mother in her last few years. The main difference was that while she could be infuriating to deal with sometimes, at least she was fairly gentle about it. The worst she seemed to be able to come up with was suddenly, out of the blue, accusing her sister of "having a very fat behind" ! Otherwise she was quite a sweet old lady.

Obviously your Mom is so terrified by what is happening to her, and with her dementia added on, she's raging against the dying of the light, but in such a terribly selfish way, she is incapable of seeing from someone else's point of view. I am sure she has no concept of how this is destroying you. It seems they're possessed almost -doesn't it?

Getting anything set up to help both you and her if she is unwilling....well I wish I knew a way around that. If she were very advanced with her dementia, then I would think Power of Attorney would be easy to obtain. We did that with my mother. (We got medical power of attorney anyway)The problem is as far as the medical people are concerned,your Mom's 'borderline'.

The only thing that I can come up with is if the hospital say she has to be an inpatient for a few hours (at least) before they will call a shrink....then (please excuse me for saying this about your poor Mom)...but I hope she will have to stay in hospital soon over something long enough for her to have a proper psychiatric evaluation. I don't suppose it does any good telling them about your own health and that you cannot cope? I agree she needs to be in a nursing home, but I guess she can't be taken anywhere against her will.

You poor thing. I am truly sorry about what you are going through. I was thinking about you today, strangely, while out on a walk, and wondering how things were. I didn't realize they were so very bad right now.  

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by grneweene, Mar 06, 2010
I don't know what state you live in but in some states you can have adult protective services or if that doesn't work an involuntary committal.  Do not be surprised at how well people can fake out the "professionals".  They're good. If she has taken 20 advil call 911 and tell them it is an attempted suicide.she has taken 20 pills and leave it at that. an overdose.  period.  they will pick her up cart her off to the hospital. They will treat it as such and she will get evaluated.  if she is not mentally able, has made statements or done things that can harm herself or others it may be in your best interest to talk to someone regarding this and make sure you document what she has said, or done that threatens herself or other peoples well being.  In the state of NC it would be a magistrate for an involuntary commitment. talk to an attorney about avenues you can take regarding ways to obtain power of attorney of someone mentally unable to make decisions.  I'm not an attorney but if it were my loved one, i'd do what i would have to do.   I'm not sure what the requirements are for an I.C. exactly,  but it would be worth looking into or at least speaking to an attorney about it but either way, sometimes we have to do unpleasant things to help those we love.  sometimes the system we have doesn't work for everyone and we have to work around it.  you do what you have to do.

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by Jaybay, Mar 06, 2010
My sister graciously accepted Mom duty for the rest of the day.  I just got out of the shower after a few hours on the Harley with my husband.  We HAD to get out of here, but were still haunted by the cell phone.  She called every 15 minutes until DH couldn't take it and finally called her.  Mom said my sister was "blowing her off" and she was stuck on the couch and couldn't move.  My sister says Mom has called her every 5 minutes and she's on her way over there now - if not there already.  Not much she can do but offer to clean her up (Mom even admitted she's dirty) and get her something to eat and drink.  I'm huddled up in my jammies and praying the phone doesn't ring for at least the rest of the night, but I have little hope of any peace.  OMG. She's calling on DH's cell.  I'm not touching it.

Yes, a demented person does seem possessed.  It's d*m sure not the person you once knew.

I'm in Texas, and the only way to get Mom committed involuntarily is to call the police.  They'll be fooled just the same way the APS shrink was.  IF they do anything, they'll take her to the county hospital 40 miles away, assess her, and probably send her right back home again.  She is extremely good at sounding convincingly rational when talking to doctors, but even that facade is beginning to crack.  

Here we go again.  Ring ring ring...  just shoot me.

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by teko, Mar 06, 2010
It definately sounds like her living alone is over. I would reverse the roles here. You take control and let her know she has to meet you half way here. Let her know if she does not you will get outsiders involved with the situation. Let her know how hard it is on all of you. My heart goes out to you for sure.

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by ChitChatNine, Mar 06, 2010
Jaybay,

My thoughts are with you --- very difficult situation.  We're here for you anytime ...

C~

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by R Glass, Mar 06, 2010
You may be the blame. Ever hear the expression “mistaking kindness for weakness”? They may be playing on your weakness (including your mother). Try turning your phone off and don’t tell your siblings. Have you tried tough love? It’s worth a try. As long as everyone knows they have you for an option, they have an option.

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by Jaybay, Mar 07, 2010
LOL!  I really have to laugh R Glass.  :-)  Anyone who personally knows me would be laughing too.  The first word anyone uses to describe me is either "strong" or "tough" so trust me on this one, it's not weakness.  I've done my best to set boundaries to protect myself, and make schedules clear to mom and everyone else in the family, but things are moving too fast now.  Even if bro and sis had the time to rotate Mom Duty with me, there are not enough free hours in the day for what she needs, which is a full-time aide just for starters.  I doubt anyone could live through this mess without experiencing some kind of physical and mental symptoms.

Another sad thing is that I pegged Mom's dementia 15 years ago.  I started noticing lapses in memories, outright fantasies, and the occasional phone call where it was patently obvious she had no clue who I was.  About 5 years ago I asked her doctor if there was some way to test her for alzheimer's.  Nope.  Not unless she asks me about it.  So we let the demented person lead the show yet again.  Great.

My brother and sister are having a difficult time understanding that Mom IS demented and continue to engage her in rational discussions that quickly break down into shouting matches.  They expect the response from the Old Mom and blow up when the New Mom appears.  It's like working with an aggressive dog.  You have to constantly monitor your own emotions and stay calm at all times.  Mom is relentless with anyone in her presence.  She either talks or screams non-stop in an attempt to get people to support her delusions.  Then she triumphantly calls everyone else in the family saying, "so-and-so agrees with me, therefore YOU are wrong and I am right."  That's been going on for years and some of Mom's fantasy stories caused a lot of friction between family members because of her vicious gossip that was usually completely fabricated.  At least now everyone know not to believe her stories, or to do some basic fact-finding first.

My sister went over to Mom's yesterday and the report wasn't good.  Mom is waaay out of her mind, and the only thing that kept her from verbally shredding my sister was the presence of her 12-year-old granddaughter.  Talk about "out of the mouths of babes" - when asked if she thought her grandma was looney tunes she replied, "Grammy is so confusing.  She argues with herself."  Whoa!  That was the most astute observation I've heard yet.  It's 100% true.  Mom has to first pretend a problem isn't as bad as the doctors tell her.  As her condition worsens, she has to work harder to deny its existence.  Then reality tries to intrude so she has to argue with herself to make the fantasy a reality in her mind.  We should have consulted my niece from the very beginning.  :-\

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by R Glass, Mar 07, 2010
   My only other suggestion would be for temporary relief, tell your Husband to get louder pipes for his bike. It works like therapy for me.

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by Diane12855, Mar 07, 2010
My mother was a lot like yours, but luckily before my dad died he and my mom gave my younger sister power of attorneys. That didn't work with all of her doctors though, so we found new ones. In SC you can go to the county Mental Health office and fill out papers to have someone committed for evaluation for up to 90 days... nobody can fake it for that long. Maybe there is something like that there. Or have you tried to get the Department of Social Services to go out to her home? IF they see the mess she lives in, they may step in.

One last thought, get one of those little tape recorders and just turn it on while you are there. It goes for 90 minutes per side of tape (if you get a 90 minute tape and set the recorder to 1/2 time). That should be enough to convince anyone that she needs help. I wish we had thought of that during the phase when my mom was totally paranoid and calling her siblings saying that we were trying to take all of her money. Family members who aren't there can be a real pain in the ***. The recording would be good for that too.

Most important, don't let her destroy your health. Once she is gone, you will want to be able to get on with your life.

Also, I agree with the post above. Turn off you phones so you can have some peace.

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by Tuckamore, Mar 08, 2010
As I have said my mother is not to extreme that your mother is...but she does not follow her doc's orders and is slowly killing herself...She takes her meds on a hit and miss basis. She also manages to pit one sibling against the other...and goes from home to home causing issues. Most of us four are smart enough to recognize what she is doing. She is usually at my home as she is today. So I can relate to some degree.

And as I write this I can hear my mother wheezing loudly and coughing because she has "forgotten" to take her inhalers again. When I reminded her to take them a bit ago I was an interfering. lying so and so, she claims she has taken them (Iknow she didn't) she claims I am trying to make her "look senile. It's a fruitless fight and mind you this is the treatment I get in MY house.  But enough about my issues, your mom is in need of immediate intervention.

I did think the idea about recording her was a good one. That may shed new light on the situation.

This may sound tough or thoughtless but you seem to have tried everything else ....and I certainly don't mean to sound heartless or cruel. But here's a thought, simply refuse to come to her aid. Give her the numbers of APS, the local social service department, her physician and maybe a home health agency. If you all refused to run when she called she may realize that she needs help. It sounds as if she couldn't be more angry at you than she is currently.

As long as someone comes when she screams you are enabling her to remain in her home. Again please don't take this is any other way than how it is meant...a helpful opinion. Are you not inadvertently helping her in her denial process? Aren't you unknowingly allowing her to realize what is happening to her? As long as you take her abuse she will dish it out. Her dementia may be too far along for you to reason with her. But maybe should could understand better if she was held accountable for her actions, dementia or not. If she were a drug addict screaming for drugs that were killing her would you go to her aid? Of course you wouldn't. So don't go now. Let the situation become what it is in reality. Believe me if APS or Social Services gets enough calls they will do something.    

And I agree with Diane, once your mom is gone you should still have a life yet to live. Don't run your health down to the point that you cannot return to functioning levels. I ask myself everyday if I am doing that to myself by caring for my terminally ill father.

I have no good answers for you. None of us do but please, please put your health and your husband first. If your mother was thinking straight do you beleive that she would want you to ruin your health? Would she expect you to take the abuse she is dishing out? I doubt that she would, as she raised a wonderfully caring daughter.

Good luck my friend,
Tuck

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by sharon_lee, Mar 08, 2010
I ditto teko's comment....hopefully setting some boundaries and sticking to them, telling her what you expect of her, and what will happend if she does not do those things...and tell her what you will do, and won't do for her...and follow through...This is not good for you or your siblings having her keep you in bondage to her health issues...etc...
I hope that you can find something fun for you to do....Is there a co dependance anonymous in your area? If not, AlAnon is so similar that you may get some support from attending a group meeting...The book Co Dependant no more, is really good. I'm only sharing thoughts, so don't take it as thought I am saying you have to do any of these things...do know, however, I am concerned about you. Take care....

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by Jaybay, Mar 08, 2010
I like that:  "keep you in bondage to her health issues".  That's exactly IT.  I am hostage to a shrieking brain stem on a bone.

I've been setting boundaries for months, but Mom doesn't abide by them.  We had to go out of town overnight in early October to tend to DH's mother, and my mom had a meltdown.  I told her the day before, in person, and made certain she knew to call my sister if she needed something.  No.  She wants ME.  We turned the phone off and when we turned it on again, there were 23 hangups and 19 messages in less than 24 hours.  Mom denied she did it when we got home - even in the face of showing her the call list on the phone.  "There's something wrong with your phone.  I did not do that"

Another fun filled two days.  Mom was still in meltdown mode Sunday morning.  This time she was shrieking that she was helpless and couldn't walk (she can't) and needs a transfusion (she does).  I offered to take her to an ER clinic (she won't go to the hospital ER, and frankly I don't want to either) to get her hemoglobin checked.  The first facility didn't take medicare but referred us to one that does.  Mom has no patience and started another meltdown in the waiting room.  She started yelling for me to get her out of this sh*thole because she wasn't going to wait one more minute.  It hadn't even been 5 minutes.  Then she loudly demanded that I "ask that girl" how long she was expected to just SIT HERE!  Oh Lord, just drop me in a hole and leave me there.  

I'll spare the gory details of the rambling, incoherent life history she gave the doctor as a reason for wanting a hemoglobin check.  I was standing behind Mom drawing circles in the air next to my head.  Thank God the doctor caught on.  I interrupted (Mom HATES that) and gave him the 5-second review and Mom about ripped my head off and sh*t down my neck.  "I do NOT have a GI bleed!  It's a LITTLE bleed!  And I need my BLOOOOOOD!"  The doc got the picture, ordered the test, and we left.  And yes, she was 8.5 and the blood doc doesn't want her to get below a 9.0.  This is 8 days after her last transfusion and Mom absolutely believes it's been 3 weeks and she's getting better.  

The hope was to avoid a visit to the blood doc and go straight to the hospital today to get typed and crossed for transfusion on Tuesday.  Mom has picked up so many antibodies in the past year that it takes about 12 hours to make her blood, and it has to be run through a warming machine.  It's getting to the point that they're not going to be able to type and cross fast enough to keep up with her.  A blood draw for type-and-cross is only good for 3 days, so that procedure must be performed each time.

My morning started off with more hysterical calls from Mom.  I turned her over to DH and went to see my shrink.  I come home and HE's p*ssed off and ragging on me about my mother.  He had already agreed to take Mom to the hospital but since he waited until I got home, he decided I should do it.  I've got her all day tomorrow as it is.  He grudgingly took back Mom duty for today, but as usual, it had to be on his time.  He had internet surfing to do so he made her wait until 2:30.  By that time she was completely around the bend.

While they were gone for a whole 1.5 hours (whoo hooo!) I called Mom's home health care people to ask about getting an aide in the house.  I got a garbled explanation that she can only have an aide 1 hour, 3 times a week, and they will have to send a nurse to do another evaluation.  IF the nurse determines it's necessary (HA!) then he said something about getting Mom on Medicaid.  She has Medicare AND an expensive AARP gap insurance policy, so I don't understand WTH Medicaid has to do with this.  They have already offered physical therapy, but it boils down to Mom not wanting anyone other than family in her house. Period.

I bit the bullet, called Mom and asked her to please see the nurse on Wednesday.  I told her that my health is in jeopardy and that I (emphasis on "I") need the help.  Boy did I get told off.  "I don't see that you're doing that much.  You aren't over here doing X, Y, or Z so there is no reason for YOU to be sick!  There's something wrong with your head.  Do you know how many widows like me live alone with no help?  Now you just shut up and do what I tell you to do and nothing else!"  I told her to cancel the nurse appointment if she wanted to, but I can no longer be the Point Man where her needs are concerned.  The tirade got worse so I told her I'd see her tomorrow, goodbye.  We were going in circles anyway.  I tried.

I asked bro and sis to "officially" take one day a week of Mom Duty so I could get a break.  I planned to put those days on a calendar so Mom would know who was available for her.  Big surprise.  Bro ignored it.  Sis said, "forget it."  Somebody tell me how to set any kind of boundaries with these people, because I'm obviously doing something wrong.  They are obviously better at the game than I am.  But then, they're also apparently willing to just let her sit in her own stew.

Guess I'll wrap up today's vent.  Another fun day of transfusion tomorrow, and yes, I'm the one dealing with her.

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by kenneltech, Mar 08, 2010
Where the hell do you live???  Social services should absolutely be involved because of so many hospital visits, instead of telling you that there's nothing they can do!

If you tell them that she is a danger to herself or others (and that's in the AMA), they have to get involved!  That doesn't mean that she threatened to kill herself, it also means that she is a danger to herself because she is literally not compliant with getting help.

What I don't understand is when she threw a fit in front of the cardiologist, why didn't he believe you then?  This whole thing seems a bit strange to me, I would contact a different agency because every social services agency has an adult protection service in it that investigates when families are concerned about their loved ones.  They need to send a social worker out there because you are the family and they have to take your claims seriously.

If I were you, I would contact my local senator and ask him what kind of programs they're running there!!!  I'd tell him that you've exhausted every avenue and no one is doing anything.

If the place is filthy and discusting, and your mother refuses to bath, etc., that is a health hazard, and you can actually get the police involved if she throws another fit.  They should have a community forum on a website, tell them that she is a danger to herself and if the place is in that bad of shape, they should come in and condemn it.

I know this sounds cruel, but if you refuse to take her to her appointments, a home health agency or social services or a social worker will HAVE to get involved, and once they see the conditions she is living in, then maybe the ball will start rolling.

Until someone actually SEE'S this mess you are speaking of, nothing is going to happen.  So you HAVE TO STOP being her doormat and actually MAKE someone get in there and see it.  Cruel as it may sound, refuse to help, even if it's just for a little while, so that a social worker HAS to come out to access the situation.

I'm so sorry, I went through this with my mother, who I DID NOT want to care for because of all the abuse I took from her when I was a child, but was the only one to do it, and she pulled the same crap until I put my foot down and refused to do it.  FINALLY, social services got involved because no one else would.

Good luck.

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by teko, Mar 08, 2010
For years, I worked in nursing homes, taking care of the elderly. As they age, and get dementia, they become more childlike in their behaviors. They are great at manipulating others and when they do not get their way, it is very common for a tantrum to ensue. If she is incontinent, cannot clean herself up or function as a dependent person, she has no business living by herself. If one of the relatives will not or can not take her in to their home, she must be forced to consider either a nursing home or an assisted living facility. Now this gets tricky, because if she now owns her home, it would more than likely have to be sold to pay for her accomodations. She needs for someone to be with her around the clock. If your siblings will not share in the care of your mother, I would contact an attorney and check into the possibility of getting a gaurdianship of your mother, therefore giving you or even all of you children a say in her care. She will not agree to anything other than what is going on now, and unfortunately it cannot continue. She does not realize that she will be better off, she is hanging onto what she knows. Anything else scares her. Someone needs to take charge. Gently if possible, but it has got to be done for your moms welfare. Sorry so preachy...ew

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by ginger899, Mar 08, 2010
This is so awful, but I understand. You don't want to....CAN'T just either dump her or be "cruel" to her. She is your Mom. Sometimes, even for a flicker of a second, you see the person you once knew. You want to do the best that is humanly possible for her. Plus, you aren't getting the help and support (on a practical level) from your brother and sisters that you deserve.  You are taking on the full burden because there's no one else there, and you can't NOT do it. Is there any possible way you could trigger in her any of the "old mom" and maybe....just maybe for a moment (I know it may not last, but whatever) -get her to feel for you again, the way she once did? Is there any way you can reach her at all? Sometimes I could reach my real mother behind all the craziness by looking in her eyes, feeling the love we knew, holding her face in my hands, stroking her hair....sometimes she'd be quite lucid and say some deep things when I did that. It didn't last long -maybe an hour or so. We'd sit and smoke together in the middle of the night. (I know -total yuck!) But it felt right. I could get through to her at times like that.

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by Jaybay, Mar 08, 2010
Let's see.  I've tried:

1) The family intervention route just to get an aide in 3 hours a week.  What a fiasco.  Mom simply fired her after the first visit.  Then everyone in attendance, (me, bro, sis and Mom's sister) got blasted for weeks.  She absolutely despises her sister because she's 4 years older and very active.  Two personalities on totally opposite hemispheres.  My poor Aunt can't say one word to Mom that doesn't set her off no matter how innocuous, and drives my Aunt to tears.  Their relationship is in tatters and has been for several months.

2) That happened while we were recovering from losing our home to a flood in April.  I couldn't keep up Mom's house while I destroyed and rebuilt my own.  So I refused to do her shopping and laundry duties.  Nobody else would do it, so Mom hired an errand lady.  Totally fine with that.  Does that qualify as "tough love?"

3) Reason and redirection.  Reason is pretty much gone now, and redirection will buy you maybe 5 minutes of discussion on a topic other than herself, but she circles right back to it.  Since Mom can't just sit and watch a movie and relax these days, it's exhausting being around for any length of time.  There are so many "upsetting" topics that there isn't much left to talk about but the weather.  How long can you keep that up?  Mom isn't interested in anyone other than herself.  Forget all of her grandchildren here in town.  She could care less.

4) Social Services.  Here in the 4th largest (or are we 3rd now?) city in the US, their resources are spread extremely thin.  I self-reported the situation in a 9-page detailed report to Adult Protective Services.  They sent a shrink to her house in 2 days - fast! - but she fooled them into believing she's sane enough to make rational decisions.  I hope the guy got a load of feces on his pants from sitting on her couch.

5) The house itself is clean thanks to hired maids, but it's Mom's person that is filthy. She won't let me or my sister help her bathe.  She actually starts swinger her fists at us if we push the issue.

6) I've personally spoken to and written letters describing the home situation to her doctors.  They punt to one another and finally the primary care doc leaves her a message at home.  She won't call him back.  They all tell me that Mom still calls the shots so it's out of their hands if she doesn't want the help they have to offer.

7) Money is a non-issue here.  You'll have to trust me on that one.  The house proceeds would be a drop in the bucket compared to her other assets.  We have begged Mom to go to assisted living for years.  She's past that point now obviously and needs a nursing home.  If she wants to stay in her home, I can even live with that as long as she's not alone and allows a few modifications for her own safety.  Not happening.  She. calls. the. shots. as social services has reminded me numerous times.

There are short flashes of the Old Mom, but they last mere minutes.  I suspect reality sets in and she just can't handle it, so those times generally end in an angry outburst and accusations that I'm being mean to her when I haven't said a word.  Looking back, this person has always been in there, and has made brief appearances ever since I can remember.  My siblings confirm it as well.  She's just getting more and more like... herself.

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by LindaTX, Mar 09, 2010
I feel so badly for you.  You just can't seem to catch a break.  You and your siblings must provide a united front.  I've been there only I had no siblings. My dad's dementia had progressed to the point where he had to have a caregiver 24/7. I did finally get power of attorney over his finances and did hire someone a couple of days a wk at first so I could have a break.  We live in central Tx and because of his frequent trips to the ER we usually got the benefit of home health for weeks on end. So that helped a lot with his bathing and incontinence issues when it got to that point. You really do "lose" your own life while you are thrown into this role. You have to keep reminding yourself why you are doing this and know that you will never regret taking care of her to the very best of your ability.  Trust me on this.  After my mom passed away my dad was in his own home, nearly burning it down, not really, just smoking up the kitchen by forgetting the bacon on the stove, getting lost driving from Houston (where he lived) to Dallas, 250 mi away.  My dad was alone for 4 yrs before he had a fall and broke his hip so he had to move in with us.

Since I did get control of his finances, I made sure his necessities were taken care of,  he basically had no bills, especially when he moved in with us. No utilities, no taxes or ins when we sold his house.  He still wanted to drive after his hip healed and a few times he did and once again got lost.  The DMV were ok with renewing his Driver's License!!!  What???   We had to disable his truck and car, had to.  The point is every situation is unique and it's a day by day journey.  You have to enjoy them the best you can while you still have them.  I got help from a Focus on  Aging or something Assn.  that is a real good support group....which you desperately need to get involved in.  I would go to my aerobic classes and I'd even get a weekly massage, all compliments of my dad. You really have you take care of yourself first, no matter what it takes.  If you do this, you will have a better spirit when taking care of her.

When, after 5 1/2 yrs it got to the point where I couldn't lift him, couldn't keep an eye on him with the nursery monitors, basically just couldn't do this any more, I went searching for alternative living places (nursing homes).  Looked at everything within a 50 mi radiusf us.  That was really hard....making that decision after him living with us for 5 1/2 yrs.  He was still lucid enough to know but I was surprised that he took it in stride.  We chose a smaller place about 10 miles down the road, so we would bw close enough to pop over any time.  Starting out I took him breakfast every morning and tried to visit a couple of times a day so he didn't feel like we had abandoned him.  It's such a hard ordeal even in the best of circumstances but it will be ok and you absolutely have take care of yourself.  Just take a deep breath......             Best of Luck, Stay in Touch, Linda

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by margypops, Mar 09, 2010
I like gingers input on this sad story, I didnt get the chance to look after my mom and I should have been there, whatever happened, but wasnt I do know that folks who can struggle through it as you are ,are forever glad they did.I live with the guilt  every day and wish I could take it back, she looked after me wonderfully whilst I was a child, ...My opinion is you do what you can thats all, get some help so its not such a burden...Life isnt easy is it...it must be terrifying for her ,I am told that right from the begining they know whats happening .

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by Jaybay, Mar 09, 2010
I take back every bad word about DH I posted yesterday.  He is now on his way to take Mom to the hospital for her transfusion.  Ater yesterday's conversation, I'm sitting here shaking after tossing and turning all night.

How do you all respond to extreme stress like a divorce, natural disaster, or the death of a loved one?  I tend to internalize everything and react first in my GI system.  Can't eat a thing that doesn't come back up.  The past couple of weeks I've been sleepless despite constantly trying to use my self-talk, meditation and relaxtion techniques.  During the day my whole body shakes to the point that I'm on weak and unsteady legs.  My hands tremble so badly I can hardly hold a pen.  I don't even want to know what my blood pressure is doing.  It does help to vent through the keyboard though.

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by LindaTX, Mar 09, 2010
Hey, I just happened to remember, there's a " community based alternative" program that may be based on eligibility, you might check and see what the guidelines are.  The other thing is that maybe she needs either an anit-depressant or anti-anxiety drug that would not make her drowsy but give her a feeling of calm.  Does she have any friends or church friends who could come for a short , 1 hr., visit once a wk, and one person at a time and see how she tolerates the stimulation.  Bottom line, she probably needs to be transitioned into a nursing facility.  You know they are really good about letting them go home on the weekend...that is if you can get them to go back, lol.  

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by Jaybay, Mar 09, 2010
Mom ran off the few friends she had years ago, and scoffs at her children for going to church and having faith.  Our parents were adamant atheists when we were growing up.  Funny how every one of us eventually found faith and found a church home, isn't it?

Mom had two different anti-depressants prescribed last summer.  She gave each one a two-day trial, said they didn't help or made her worse and threw them away.  She does have a tranquilizer prescription but only takes them after a meltdown rather than regularly as prescribed to keep her from getting to that panic-attack point.

Of course she needs to go to a nursing facility.  That's what we've been trying to achieve.  Bottom line: legally Mom gets to determine her own course because her civils rights must not be infringed.

I recently read a book about coping with difficult older parents in just these situations.  My shrink loaned it to me as her father is very much like my mother.  Written by shrinks, it included a 40-item questionnaire used to determine a difficulty rating based on various behaviors exhibited by the patient.  Mom blew the chart right off it's axis achieving a 99% rating.

In order to get custody of mom, we will have to spend thousands of dollars we don't have (both of us being unemployed) and have a process server present her with the papers demanding her presence in court.  It will take about 4 months assuming she doesn't contest it, but she will.  There are reasons I can't be the one to bring the suit (my own ill health being one of them), and neither of my siblings will take it on.

I've never seen a woman so neatly cut off every attempt to improve her life.  You couldn't write a believable movie script based on the past year.

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by LindaTX, Mar 09, 2010
If she has no Faith, then she truly is lost and needs our pity.  She is dealing with so much inner-turmoil and it is tearing her up. She is acting out because she feels wounded.  The only way to reach her heart will be through deep compassion and prayer. It's not too late but one day it will be.  Does she read?  Maybe she should sit and read  these comments written here for her benefit and it just might soften her stance.  There's a lot of help for her and for you right here on paper. Give her the benefit of the doubt....let her read this and then go from there.  I, for one, will be praying for her, you and your whole family.

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by swampcritter, Mar 09, 2010
What Swampy did with his aunt (who, although not as bad as your mother, certainly is handicapped in her ability to care for herself day to day) is to hire a licensed clinical social worker to perform an evaluation. The eval costs about $700. For that, the social worker went over to his aunts home and observed how she lived and spoke to her, evaluated her medications and so forth.

Based on the report, you can go to a court and seek guardianship (different states have different terms for it). You need a lawyer to do that.



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by Tuckamore, Mar 09, 2010
Jaybay,

In my state the laws are similar to yours. Obtaining guardianship is next to impossible unless a physician or the state is involved. If one attempts to obtain guardianship the state must appoint your mom a guardian ad litem to protect your mother's rights and best interest. The person bring the action will be required to pay the costs incurred by the guardian ad litem.  The costly, detailed and long process to become the legal guardian over your mother may very well take longer than it will for the APS to see that she truly needs assistance.

I don't know why one sibling is the target or steps up to the plate when the others won't. After years of working in long term care I saw it everyday. I also saw that when the money is about to be dished out those that had no time for mom or dad suddenly appear with their hand out first.

All our well meaning advice cannot change the situation you find yourself in. But please try do write down those numbers I suggested for your mom. Place them in several areas of her home. Please don't run when she calls, refer her to the list of  "help numbers."  It may every well be that her short term memory is so effected that she cannot even remember all the directions, limitations, rules and so forth that you and others have set for her. Don't continue to be her whipping post.

As ruthless as she may appear I would agree that she is feeling powerless and afraid. She may not have the reasoning ability to reach out in the ways that you or I would for assistance. And she seems far to proud to accept help from any other than those she feels "owe her," her children.  

I doubt reading this journal would make her see the "light." I beleive she is mentally incapacitated and unable to see any one's "side" but hers. In my opinion she feels justified in her actions because she simply cannot reason well any longer.

How sad that she has no faith to draw upon. It is my faith that sustains me.

I hope that there are soon better days for you. Remember that you must take care of you first. Try to hang tough and know that we care about you.

Gentle (((HUGS)))
~Tuck~



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by Jaybay, Mar 09, 2010
Tuck, you nailed it.  I spoke to my aunt today and she went on and on about how I should NOT pick up the phone to call Mom.  Gee!  Everybody else does that too!  I have to stay involved.  All I wanted was a couple worry-free days to myself, and now the rest of the family has picked up the "Jaybay is crazy" mantra.  "Whatever shall we do?  She's falling apart right along with Mom, but I have my own family to deal with..."  Enough.

Not a great day today at all.  DH got mom to the hospital this morning.  She ranted at him the whole way about me being her big problem.  He had enough of it and reminded her that I am his wife, so we're stopping this conversation now.  Wish that technique worked for me, but mom is always better-behaved with men.  DH was horrified when he picked her up.  She can barely get off the couch or out of a chair on her own now.

I picked Mom up and drove her home late this afternoon, and I am more alarmed than ever.  She was completely drugged out of her mind between the benadryl they give her for the transfusion and I assume her tranquilizers.  Mom was in too much pain to shriek and rambled on about the other patients in the room today.  I had to ask the nurse to show me how to get her safely in and out of the car.

It took quite a while to get Mom installed in the living room.  She was obviously exhausted, so I rattled around the house taking in the mail, washing dishes, got her something to drink...  Then I went to the bedroom to get her portable phone that she rarely keeps with her.  Just as I got to the front door area, the stench of feces slapped me in the face.  Yep.  Worse in the bedroom.  All the linens were on the floor in a heap at the foot of the bed and the mattress pad a jumbled heap on the mattress.

I carefully picked up the linens while looking for evidence.  Nothing.  They smelled vaguely of feces but none there.  Neither was the bottom sheet.  Got fresh linens on the bed and searched the bedroom and bathroom for the obviously soiled bottom sheet. Nothing.  It couldn't have been in the trash because DH took the can out to the street last night, and there is no way she could get that far anyway.  I even checked the washer in the garage - the woman has the strength of the insane so she just might have made it there.  Nope.

Then I hear rustling in the living room.  "What are you doing Mom?"  She was trying to get to the bathroom.  The major obstacle is the entryway.  It's raised about 4" and separates the front of the house from the bedrooms and bathrooms. She has been using the wheelchair as a walker in the front of the house, and hangs on to the front door knob to get to the hallway.  I can't tell you how terrified I was to see this exercise in action.  She's dragging herself around, panting in pain and nearly crying with frustration.  Wouldn't let me just wheel her over it and on to the hallway.  I managed to get the walker in front of her just in time.  She would have gone sprawling.  And could she use the guest bath right in front of her face?  H*ll no.  We have to struggle aaaallll the way to the back of the house to HER bathroom.  I couldn't take it when she came out and told her to get her rear in the wheelchair.  Guess she hurt to badly to argue much this time.

Ultimately, I had to leave her.  Can you spell g-u-i-l-t?  It didn't take long for another temper tantrum to begin and I had done about everything I could to set her up for the night.  Tomorrow, DH and I will build some ramps for the entryway and install them.  She doesn't have the strength to throw them out by herself, so she can scream all she wants.  The wheelchair will be placed in her car.  And I finally figured out where she must have hidden the sheet.  Under the bed.  I'll be doing her laundry tomorrow while DH does the ramp installation.

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by specialmom, Mar 09, 2010
Jaybay,  I mean this with all sincerity, you and your husband are saints.  Many an in law would stay uninvolved but yours has embraced this issue as his problem as well.  He truly loves you and for that, you are truly blessed.  I'm glad that you have him.  I'm glad that he has you.  

I have no better advice for you than what has already been given.  The thankless job you have of taking care of your mother and that you do it even when it is to the detriment of your self says a lot of your character.  So while I can not offer you a solution, I can say you are one hell of a lady.  

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by Data_Nearby, Mar 09, 2010
Jaybay, I suggest borrowing a video camera or, in the least, a voice recorder and start keeping a record since this has now taken over your life anyway. Keep trying to gather evidence and get her into a home. Surely it isn't your first choice but neither is an early grave or a bitter husband.

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by Mage1970, Mar 09, 2010
I'm in Australia and the Laws and services while similar are very different . Tape recorders are a good idea but I would suggest a ' Nanny-Cam ' . If you can show the various welfare and medical professionals that they are being tricked , I think they will act very quickly .
What I am about to write is going to anger a lot of people .
Install a concealed camera and abandon her .
Hire/borrow a camper - be close enough to respond if you HAVE to - but put her in a position where she will have to call someone other than a family member .
Yes I know - It's absolutely despicable , but believe it or not , it happens all the time . When I was younger I use to volunteer at a weekend respite program for intellectully handcapped adolecents - at least once evey 6 weeks we would have a no-show . The parent/s just didn't come pick up their child .
If she is put in a position where SHE has to call for outside help (e.g. Paramedics/Ambulance) and they find her "in a state" - the relevant authorities will be forced to act .
There would probably be repercusions of some sort .
What I am suggesting is LAST RESORT . But with Nanny-cams and a multitude of other wireless spy gadgets available , it can be done without endangering your mum . Sometimes you have to be cruel to be kind .
I hope you find a solution . Above all do what you have to do to ensure that your own health physical and mental isn't affected
Blessed be   Mike


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by LindaTX, Mar 10, 2010
I think that is an excellent idea, Mike!  All the siblings need to get together and present a united front to APS.  We also live in Tx and it certainly sounds like your mother, if conditions in her house are as bad as you say, could be forced into an assisted living facility.  You mentioned her considerable assets.....I'm sure her needs would be covered nicely and when and if the assets end the state takes over and covers the rest.  That's just the way it is....at least here in Texas.

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by Tuckamore, Mar 10, 2010
I agree with the Nanny-cam and the voice recorder...but I really think that your Mom will soon "show herself" on her own. It may seem fruitless to you but keep calling APS. You can't keep this up. But you, like I must have had this care giving responsibility to our parents "instilled" or drilled into us early on. We simply cannot walk away. I could not live with myself if any thing happened to one of my parents because of my "tough love," nor could you.

Bless DH's heart. My husband is the same with my parents. If he were not here to give me short breaks, run errands or take Dad here or there when Dad is able to get out I would be out of my mind by now.....and my father's behavior is no where near your moms. But than there is mother....who is much more like yours.

Both my parents listen to my husband better than they do me. They view him as God-like! And indeed he has been my best support and savior in this situation other than all the prayer to God and His divine support. I lean on him too much some times but again there is no one else...like in your situation.

Just know that we are here for you. I do understand to some degree what you are going through. You are in my thoughts and prayers.

~Tuck~  

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by Jaybay, Mar 10, 2010
Sometime either last night or this morning, Mom collapsed in her bedroom.  Mom's sister tried to call 3 times and got no answer, so DH and I ran over to the house.  I found mom on the floor at the foot of her bed.  I suspect she was trying to get to the phone on her desk, tried to use the chair for support and fell.  The chair was also knocked over on the floor.  

Mom is very incoherent and can't move.  She is in excruiciating pain.  I called 911 and about blew a gasket when they said she refused to go to the hospital.  "She knows her name, birthday and the President's name, so she's coherent."  Yeah, but she thinks she at a place called Seven Sister's that is a camp that I forced her to go to.  Or alternately, that she's already in the hospital waiting for the surgeon.  

Currently, Mom is in the ER.  She has about 5 hours of neurological, orthopedic and other testing ahead her before we know anything new this evening.  Until the docs see what's happening in her head, they can't give her any pain meds.  She screamed when they tried to change her position in the bed before going to x-ray.  My mother has never screamed in pain in her life.

I knew I shouldn't have left her last night, but she didn't want me to stay.  I knew I should have called her this morning, but I didn't.  I have no idea how long she was on the floor, but she was in the same clothing as yesterday, and the bed linens greatly disturbed with some on the floor.  I put fresh linens on the bed yesterday and the room still smells like feces.  Still can't find the missing bottom sheet; it wasn't under the bed but she may have moved it.

I have no idea what they'll find this time.  I wouldn't be surprised if she has a bleed in her brain.  The GI bleed is due to arterio-venous malformations.  She has hundreds of them peppered in her stomach and duodenum, and they more often are found in the brain.

This is it.  My mother is never going home again.  While she knows her name, birthday, and recognizes us, there is no way she is getting discharged home this time.  I made that clear to all her docs and the ER doc.  We are not taking her home again.  They can put her in the rehab wing if necessary until we find a nursing home, but back to her own home she is not going.


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by ginger899, Mar 10, 2010
That has to be. She cannot live there anymore. That is going to be impossible. If she rants about that....well so be it. She needs to be in health care of one sort or another. I hope things all work out for the best, Jaybay. I'm thinking of you.

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by teko, Mar 10, 2010
Awe! My heart goes out to you and your poor Mom. This is the time that children and parents both have nightmares about. I am glad you are standing your ground but I also know that this is tearing you up inside. Keep us posted as to what is going on and know that we are all here for you. I hope your mom is not hurt too badly.

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by LindaTX, Mar 10, 2010
Jaybay, I am so sorry about what is happening to your mom and I am so sorry you are having to go through this as well.  I went through something very similar with my mom in '92, then with my dad in '02, then this past summer with my mother-in-law.  I am sorry to say each instance was more heart-wrenching than the one before. You are doing the right thing, the only right thing for your mother.  Lean on your husband for support, he is there for you.  I know this is so hard for you but you can and should stand your ground.  It is what's best for your mother. You have no cause for regrets.

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by kenneltech, Mar 11, 2010
It is so unfortunate that it took something like this to finally get her in a place.  Her stubbornness made it so hard on you and your family, but you can't feel badly because this is best for you and her!  She needs this kind of care and if anything happened to you, she wouldn't get it. The way you were going, you were about ready to collapse yourself.

I'm so sorry you are having to go through this.  Especially the fact that your mother is an athiest, this has to weigh heavily on your soul.  All anyone can do for her now is pray.

Good luck to you and your mother and keep us informed.

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by marly1956, Mar 11, 2010
With your moms' age and the dementia I honestly don't know what you can do. If something is to happen her will Will go into probate. As for her outbursts I would say she is actually in the Altzheimers stage. I work in the Healthcare Field and have dealt with many with Altzheimers'. Why her Physician isn't doing anything is really beyond me, even the hospital letting her go. As one person said call the Protective Services. You can't keep this up on your own, its impossible. Your going to end up in the hospital and then what!! Really think it through.
I quit my job to look after my father in law after a brain anurysm. He is with us, it has now been 2 yrs. I have homecare come in 5hrs. per wk. Sorry I didn't check to see your whereabouts. If you have something like this even minimal hrs. as I have its a break. A break that you yourself really need. If Homecare goes in and they start recording on their charts, then take it to the Physician and say "here" its not only me seeing this.
My father in law has outbursts as well but very minimal. Right now he is just starting in Alzheimers' Stage, when it gets dark outside (sundowning) his mood changes, something I've noticed in the past 6mos.
However my dear you need help and it has to come through Homecare, Community Services, somewhere. Check anywhere you can. I wish you the best of luck!! Even though she is Atheist, she still believes' in something or someone. My prayers go out to you!!

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by Jaybay, Mar 11, 2010
VENT ALERT!

My brother went to the hospital this morning to check on Mom.  He was charged with the mission of getting her test results, treatment plan and ask for a psych consult.  What was I thinking?  No news other than shock at her state.  No questions, no answers, no nada.  How is it that otherwise strong men fall to pieces when Mommy is in trouble?

That hospital is totally P*SSING ME OFF!  I called the nurses station to ask about Mom's test results and treatment plan.  I got freakin' Nurse Rached who would say nothing unless I provided the 4-digit patient code.  They didn't give us one when she was admitted last night, and there are no papers in her room.  Check her intake forms and you'll see Mom signed a release.  Nope can't do that.  Must have the 4-digit code, and you have to get it from the patient.  Hello!  She's on another planet and nobody gave us the Little Orphan Annie secret decoder pen on admission.  She treated me to a HIPPA lecture and I treated her to a nice CLICK!  Dave tried his luck with his Mr. Professional routine, and she got nasty with him too.  That woman will NOT be nursing my mother again.

Off I go to the hospital after DH managed to reach Mom's primary care doc.  All he knew was that Mom has a broken hip and is scheduled for surgery today.  Not one doc called us with that news. Once Mom left ER, all communication ceased.  Is there something wrong here or is it just me?

I hear Mom moaning and crying in pain two doors away from her room.  The morphine isn't working and she can't have another shot for two hours.    Nurse Rached could care less.  

Mom still doesn't know why she's in the hospital exactly.  She believes she is having back surgery; sometimes it's the hip surgery; sometimes it's a rib; sometimes she's at Seven Sisters that DH and I own for the express purpose of her imprisonment.    She believes she's been there for a week waiting for back surgery and has had nothing to eat the entire time.  Mom also denies that she was taken to the hospital by ambulance.  The floor nurses think it's just the morphine.

Mom was finally taken to surgery and I was directed to the waiting room and told I could see mom before she went to the OR.  I wait. I wait. I wait.  Check at the reception desk.  "Oh, didn't you sign in?"  And I would know to do that HOW?  I sign in and wait some more.  No call.  Check in at reception again.  "Oh!  You must be one that they just forgot to call."  No kidding.  Mom was already in the OR and I never got to see her.

I have no idea how long Mom is going to be in surgery, what exactly is being done, and wouldn't even have the orthopod's name had it not come from the Primary Care doc.  (Much of this mess is entirely due to government rules, and you really think Obamacare will change it for the better?)  She is either having a hip plate or entire hip replacement done.  But of course, nobody can tell me anything.  I'm just family and must get news directly from the demented patient who is still in pain after boat loads of morphine.

One bit of good news.  The pastor at my church visited Mom today.  I had no idea he was planning to go, and imagine my surprise when the one and only smile and coherent story I got was when she told me about it.  Said she really liked him and was so happy to have him say a prayer for her that she didn't hurt for a good 15 minutes afterward.  Maybe there's some faith in the old lady yet.  :-)

Another big piece of good news.  I lost all my copies of Mom's legal papers in the flood, so I had to search for her original copies intending to give copies of Mom's Medical POA and living will to the floor nurses.  Guess what I found?  A durable power of attorney with my sister as the designated agent!!!  We still need a doctor to certify that she is disabled to execute it, but at last we have the tool we need to act on Mom's behalf.  Nobody in the family has a copy of this document and never knew it existed.  Mom kept the only copy.  Oh Lord, I just realized that about the time Pastor Burt was praying for Mom was about the exact time I found the POA.  He left a note for me by her bed with the time he was there...

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(15 minutes later after saying some prayers myself)  

I have a ton of work yet to do tonight, so more news tomorrow.  Bad as it is, things are improving for me personally now that I know Mom is at least safe. My blood pressure went down 20 points when I found the durable power of attorney.   If Mom's pain is undertreated after surgery, I'm going to start knocking heads at that hospital.  Keep up the prayers folks.  They're working.  :-)

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by luvinwife, Mar 12, 2010
Jaybay,
So sorry to hear you're having to endure this heartache, but glad you're not having to do it totally alone - although it feels that way sometimes. Someday, your mother & your siblings will realize what saints you & your husband are and what you've sacrificed to care for your mother. In my family (both mine & my DH's sides), I'm that 'caretaker' person, too.

I helped my DH care for his mom for years, until my DH became too disabled to do it anymore, then I took on all the responsibility. He's an only child; sometimes that's good, sometimes not. So we didn't have to deal with un-helpful siblings, but on the other hand, there was no one to call when we needed a break. My MIL was in good shape mentally until the last couple of years,  she'd always been very independent and had lived in the same house for 50+ yrs., the last 15 or so as a widow. We were fortunate enough that she had us both appointed w/Power of Attorney, in matters of medical and everything else, a few years before she really went downhill.

I remember having the same conversations w/her drs. & nurses, regarding her dementia and self-medication, and getting the same response from them that you got from your mom's drs. My MIL was excellent at convincing everyone else of how capable and independent a person she was, how she didn't need anyone's help. At the same time, the very same drs. & nurses saw me driving her, helping her walk, doling out her meds, doing her shopping, taking care of her bills, etc. And while MIL was claiming her independence to her drs., she was falling down, forgetting to take her meds, forgetting to eat, etc. She had a Lifeline device at home, and she wore the remote on a wristband, but she'd "forget" to use it. She tried to hide things from us, because she was so afraid that we'd put her in a nursing home - which we never threatened to do. So we often didn't even know she'd fallen until the next day. She always had new bruises on her arms & legs, and she'd say she 'bumped into the wall', etc. One time, we arrived to find her in the floor, stark naked, where she'd lain for hours. She was conscious, but not making much sense. She was wearing her Lifeline button, but didn't use it. She said she forgot she had it on. That's possible, of course, but it's also quite possible that she was too embarrassed to be found in that situation by anyone, especially strangers. She refused to let us take her to the ER, or even call her dr. We knew that if we did it anyway, she wouldn't tell the dr. the truth about what happened to her - I'd been caught in that little trap before. But the next morning, she couldn't get out of bed because of the pain, and she called me. So that time, she HAD to go to the ER, and the ambulance took her. She'd cracked a rib in her fall the day before. They admitted her for a couple of days, then found that she had pneumonia, and they kept her for a couple of weeks.

She was always sweet to me, but not to my DH. Especially in public; for some reason, she felt like she could demean her son more in front of strangers and get away with it. She spoke mean to him, threw things at him, screamed at him, you name it. I'd get so mad at her I couldn't see straight, and you know how he felt. Then in the same breath, she'd turn right around to me, or the kids, or a nurse, and be as sweet an old lady as you'd ever seen. Sometimes DH just couldn't bear to tolerate her, and I didn't blame him. So when he got sick, he didn't see her everyday anymore - he just wasn't able to. She didn't understand that - or didn't want to. She got to the point that she'd tell him to his face not to come, but to send me instead.  That really hurt his feelings, and I tried to explain her condition to him, that he shouldn't take it personally, but of course he did.

Many was the night that I was afraid to leave her alone (at home), but she always insisted that she didn't need anyone to stay, even family, overnight. My DH (her son) had End Stage Liver Disease & Rheumatoid Arthritis; my teenage son has Autism & Intractable Seizure Disorder, and I'm the sole caregiver for both of them, as well. That made for a handy excuse to get rid of me, in her eyes. Nothing dumb about that lady - she was sharp til the end, most of the time. But her age finally caught up w/her, and when she was in the hospital w/pneumonia, her dr. told her the only way she was getting out was if she went to a nursing facility, and she agreed. By that time, she seemed relieved and she did well at the nursing home...she only lived there a couple of months, before the pneumonia came back and she was admitted to Hospice. She died of congestive heart failure, at the age of 91. I truly loved this lady, and we were very close.

Sometimes dealing with the medical staff is even more frustrating (as you know) than trying to reason with loved ones who are affected by dementia, illness, etc.  And the so-called 'staff' are supposed to be the healthy ones, right? I wonder....My mom has worked as a med-aide in nursing homes for the past 30 yrs., so I had some insight that helped me w/MIL, but the truth is, when it's someone you love, it's a different ballgame. Now I'm dealing w/similar problems in my DH's illness - hepatic encephalopothy - and you'd think I'd be a pro at this by now. WRONG! Surprise, surprise.

sorry - didn't mean for this to be soooo long!
Take care of yourself - keep hanging in there. My prayers are w/you.

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by specialmom, Mar 12, 2010
Ugh.  I do feel so bad for your mother through al lof this as well.  She sounds like she is suffering a great deal.  Sad to think about the end of life ending up this way.  Peace to all.  

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by ginger899, Mar 12, 2010
WOW!
It's amazing isn't it that when we are in greatest need, that's the time we end up wading through crazy beaurocracy and silly rules, like wading through treacle in a bad dream. (I once dreamed I had an arterial bleed and had minutes to live, phoned emergency and they wanted all sorts of numerical codes/post-codes/date of birth....yada yada yada....so I gave up, and just died!! That was one of the weirdest dreams I've ever had but it had a horrible feeling of wacky reality about it!)

Stupid things like what happened before your mom's surgery can, and do, happen over in jolly old England too!! So it's not just Obamacare....it's the state of things on this slowly-going-crazy-planet in 2010.

I am so glad you found that Power of Attorney document. Sleep a bit now....get your strength back. God bless both of you, and your Mom as well.

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by pebblesbambam1, Apr 11, 2010
You have been going through it JayJay. I want you to know that I have a sis with dementia and she is livin on the streets. We get the same treatment. It is her choice to live on the streets. As if any normal sane person would sleep on the Wal-Mart floor at night. Everyone knows my sis in this small town, the police honk and wave at her as she is dragging her suitcase on wheels. She has told me that we were not her family and we justed wanted her money. What money?

She will talk to everyone except her immediate family which is opposite of your problem. We bought her a motel room in the winter so she wouldnt freeze to death and an officer who knows her had to threaten her to get her to go to the room. They have to know she is demented when she would lay on the ground in 10 degree weather and freeze if he didnt threaten her.Then they'll say I wish you'd help her. Excuse Me!!!!!! We have sent her to a psych ward hospital and they kept her 30 days. They told us her insurance ran out and they couldn't keep her any longer. When we went and picked her up she refused to sign the papers because she said they were wanting her to sign her soul over to satan. Wow, she was so much better, it makes me so mad. When we left she started pitching a fit and screaming to pull over and let her out of the car so mom called an officer when he arrived he informed us we had to listen to her or we would be charged with kidnapping.She has been living on the streets ever since. Me and my family have tried everything just like you from APS to social services ect ect.........   They are no help at all.

She tells everyone we are out to get her and were the crazy ones. Can you believe they think she is ok and just wants to be left alone? Goodness this medical system is absolutely incompetent. We definitely need laws changed to help protect these people from themselves.

Because it is them destroying themselves which is crazy in its self!!!!!!!!!!!!!!!!

I will pray for your family please pray for ours. I am sorry I don't have any advice for you, because I have walked a mile in your shoes and realize there are no quick fixes or answers. I have come to the conclussion only GOD can intervene and help us and it sounds like he is doing that for you right now!!!!!!!!!!!!!!! Praise the Lord I hope he will help us soon.

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by farmgarden, Aug 20, 2010
Area Agency on Aging is a wonderful and free (paid with tax dollars) resource for ALL eldercare needs. Don't understand Medicare/Medicaid? Wonder if nursing home has numerous violations? Need assistance seeking guardianship? etc, etc. Look up this agency online and call for help. They are not a psychiatrist for your emotional issues in dealing with elder care but will guide you to the appropriate resources.  Also, do not forget to turn to God - he will assist you above all else.

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