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Mom is home - temporarily

Apr 03, 2009 - 11 comments

I've been through stressful times in my life with my own health, but the past few weeks of dealing with Mom's health have pretty well beaten me to a pulp.  Mom was discharged today, but will have to go back to the hospital shortly for major back surgery.  The neurosurgeon says she has the worst MRI he's seen in his career.  No kidding!  

My brother and I are more worried about the anemia issue.  Although the neurosurgeon says he can "fix" her back in spite of the anemia, we believe the worst problem is anemia.  All benign causes have been ruled out, and an oncologist is looking in the direction of some flavor of leukemia.  Mom, my sister, and most of the rest of our family are focused only on the mobility and back issues.  

Between me and my brother and sister, we'll manage through this mess.  Brother and I have talents in the direction of organization, patient advocacy and business dealings.  My sister is fabulous at bedsitting, and moral and emotional support.  As time goes on, we're getting into a decent schedule of who does what and when so hopefully nobody will be completely disrupted.  In any event, all of our lives are turned upside down - misery loves company, yes?

For the moment, Mom is just thrilled to be back home again.  With her medications strictly enforced in the hospital and the addition of steroids, her pain is greatly decreased and she has enough mobility so as not to be at risk of falling.

Mom's incredible pain tolerance will be a huge boon after surgery.  She sailed right through the bone marrow needle aspiration, admittedly painful, but without a sound or word of complaint.  That's how she's managed all these years - mind over matter.

We need to take her to the neurosurgeon on Monday or Tuesday to go over the MRI and discuss the surgery and after care in detail.  I'm a tad PO'd about that - why could that consult not be done while she was in the hospital?  Why put this woman through the ordeal of a clinic visit in town for the sake of some kind of protocol?  The surgeon said the operation needs to be done ASAP, so why not just do it while she's already in the hospital?  Aaarrrggghhh!!!!

I picked up Mom's cat, Alexander, and took him to the vet for boarding yesterday.  That poor cat!  He's been urinating buckets for the past two years and Mom treated him the same way she always treated herself and her children where medical issues were concerned.  If it can't be treated over-the-counter, then there's nothing else to be done.  No doctor can help!  When I picked him up to put him in his crate, he urinated all over my leg and in the crate.  I have never seen so much urine come out of such a small animal at one time.  As it turns out, the cat has the worst urinary tract/ kidney infection the vet has ever seen.  He is now updated on all vaccinations and  pumped full of antibiotics.  When I got Alexander back to Mom's house, he totally dissed Mom and followed me everywhere I went.  LOL!  I figured it would be the other way around since I was the "bad girl" who took him to the vet and traumatized him.  Go figure.

Mom thinks that she'll have surgery and be back to normal after 4 days in the hospital.  I'll be sure to question the surgeon thoroughly regarding post-op care so Mom understands exactly how awful it's going to be.  She's never had any kind of surgery in her life and expectations are not going to meet reality.  Again, her massive pain tolerance will be extremely helpful in the weeks to come.

That's it for now.  I'm going to bed.

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390388 tn?1279639813
by Me967, Apr 04, 2009
Best of wishes to your mom, you and your man, your family and the kitty.  Maybe now that your mom is feeling better and realizing that the medications (actually) helped with her pain, she will follow threw from now on with them.  

I feel for her concerning the back surgery.  It sounds like you might really have your hands full.  I know the way she likes to be at home.  I would imagine she will have to go threw quite a bit of rehab afterwards, before returning home.  

Best of wishes to you all.  Keeping you all on the prayer list.

547368 tn?1440545385
by Tuckamore, Apr 04, 2009
I am so sorry to hear about your Mom. I care for an elderly father with severe COPD and a "crumbling" spine in my home, 100% of the time. My ailing and elderly Mom that had 5 by-passes (six months ago) and COPD is in my home now only 60% of the time. It is extremely challenging, especially when added to my chronic pain. Neither can be left alone for more than an hour or two on good days. Often I feel that I too have been "beaten to a pulp."  I am often exhausted. I just wanted you to know that I can relate.

And yes medical protocol is annoying to say the least. I wonder and worry about our elderly that do not have loving and attentive families such as yours. They are forced to manage them self through this trying and confusing maze we call the health care delivery system.

Your Mom is so blessed to have you and other children that do care for her. Please don't forget to take time to care for yourself with the turmoil with your Mom. Treat yourself to delights now and again.  I'll be thinking of you and your Mom and praying for the best.

356518 tn?1322267242
by sandee1818, Apr 04, 2009
Glad to hear your Mom is back home:)
I too will remind you to take care of yourself too:)

203342 tn?1328740807
by April2, Apr 04, 2009
I'm glad to hear your mom's on the mend now. I hope things will just keep getting better. I'm so glad you helped her poor kitty too so that he can be feeling better too. You are a good person! Anybody that's a cat person is good in my book! :)  I hope that you are well, too, Jaybay. I know you've had a lot of health issues too. God bless you and your family! And thanks for your note on my journal. My dad is doing great and hopefully won't need any more surgeries or anything. We'll keep our fingers crossed!

675347 tn?1365464245
by ginger899, Apr 04, 2009
The next few weeks aren't going to be easy, but it's good that your family are going on good teamwork. That burden shared will make things much more workable.
I'm sorry your Mom is facing all these things. The more I hear of her, the more I find I kind of admire that stoicism of hers (even though I do know it can't be easy with her)Older people are a bit like that very often,- (you don't make a fuss about a bruise or scratch, or a little blood, or feeling done-in, etc) -but sometimes to the point where warning signs go ignored...

The Health Services do that kind of clumsy stuff here too Jaybay. Until fairly recently, they were calling my mother to go for routine hospital or local health centre appointments at 9.30 am (they know how old she is, how frail, how she uses the commode about every 1/2 hour through the night and can't be up with the birds, how the simplest procedures, like getting in and out of the wheelchair , take ages!) Then she'd fret and get confused, and be up at 5am instead!  She'd have to be washed, dressed, breakfasted, umpteen bathroom visits, and bundled in a cab, etc by nine! By the time she got home she was so burnt out my brother and I thought she was dying. I rang them to arrange home visits for blood tests etc....but they didn't like that, until I had to get stern about it!
It truly is unbelievable. It's like she had become a 'number' in the system, instead of a woman with special needs.

Good onya! Helping Alexander the way you have. He will think you are a hero for sure. His bladder must think it's in Heaven!

82861 tn?1333457511
by Jaybay, Apr 04, 2009
Thanks to everyone who has chimed in on my Mom's situation.  It truly helps to not feels so alone in this ordeal.  These things are always what happen to "someone else" - not us!

Today was the first day I've not had to leave the house on some errand or another in I don't know how long.  Without the constant adrenaline flowing through my body, I'm now a blithering idiot.  Completely flatlined.  Tomorrow my husband and I will go to Mom's to finish assembling her wheelchair and a few other little honey-do items.

When I spoke with Mom on the phone today, I brought up the touchy subject of post-hospital care.  Five years ago the neurosurgeon who was going to operate said she would need at least 2 weeks in a rehab facility before going home.  Mom freaked.  Now she says I either made that up myself, misunderstood, because SHE never heard it.  Well, she didn't WANT to hear it.  Who does?  Unfortunately, one of the new doctors told her that she would be home in about 4 days after surgery.  To Mom, that means "cured" in 4 days.  She's seen me after two spinal surgeries, and still has no idea what she's facing and refuses to plan for it.

The way I see it, Mom has three choices:  

(1) Recover in a rehab facility

(2) Go to her own home with 24/7 private nursing care (She may just be able to afford that but won't want a stranger in her home)

(3)  Stay with me and my husband and hopefully send the cat to my sister's house because my husband is extremely allergic to cats.

Understand that none of these options is suitable to my mother.  She expects one or all of her children to come over and take care of her in her home until she no longer needs us.  Not gonna happen.  I'm sorry, but we all have responsibilities in our lives and honestly cannot move in with her for weeks.  Dave and I are happy to take care of her here in our home, but she's going to balk at any of the options mentioned above.  Unless she can go home "cured" and independently mobile, there's going to be some drama.

One of Dave's first jobs was as an orderly in a State hospital.  His duties were to care for parapalegic and quadripalegic patients - get them out of bed, cleaned up, dressed and ready for the day.  Through that experience, he is more than capable of dealing with disabled people without making them feel disabled.  Does that make sense?  I've seen him do it on more than one occasion, and he's just very clinical and matter-of-fact and actually comforting.  I couldn't have survived all these surgeries without him.  

Even if Mom chooses to come to us, the issue of keeping her bathed will crop up.  Obviously she won't want Dave helping, and I doubt she wants me to see her in the altogether either.  That means a home health care person will be needed.  Can you tell I'm concerned about the future?  I spoke to my siblings about this issue today, and they agree that Mom has only these three options.  We need to present a united front because she won't listen to me, and will immediately phone them up yelling about how stupid and unreasonable I am.  My brother understands my need to plan ahead.  Dave and my sister think I'm "projecting" and "worrying" and being stupid for trying to figure any of this out until DOCTOR says exactly what he's going to do.  Hello!  I realize spinal surgery has come a long way in even the past five years, but it's still a major undertaking with as much damage Mom needs to have repaired.  I've been there and done that twice, and it's hell.

Another thing I want to insist on is a pain specialist.  Mom doesn't deal well at all with narcotics and over the years I have learned not to rely on surgeons for reliable or even knowledgeable post-op pain management.  Once they're done cutting, they're done.  I want an expert on her case.  Let's face it, Mom is a geriatric patient, and older people don't metabolize meds the same way younger people do.  She only weighs 90 pounds and simply can't take any medication at the FDA recommended therapeutic dosage.

I see I'm rambling again so I'll stop now.  It really does help to be able to barf out my random thoughts here - whether anyone else reads it or not.  LOL!

390388 tn?1279639813
by Me967, Apr 05, 2009
I remember when I was there for my Gramma caring for her.  Concerning her wanting me and my mom there the whole time and not just the caregivers, nurse or whatever.  It is very hard.  At the hospital she wanted someone there day and night.  Emotionally it was very hard sometimes.  I can remember coming home from the hospital and sleeping for 12 hours straight at times.  I would be so wiped out.  Then I would pull myself together and go back to the hospital for another day or two.  Then other times I would come home and can veggies or do things around the house and go back in, only to come home wired or wiped out.  I don't regret any of it and miss her very much now.  At the time though I remember thinking...Hmmm...what's going to happen if I end up in here myself?
Now I'm rambling.  LOL  My point is I know you are going threw alot mentally and physically.  I really do understand.

Personally I think: option 1) Recover in a rehab facility would be best.  At home or at your place it would be easier for her to tell you all the what and when she is willing to do things.  At a rehab facility they call the what and when things are done as a daily routine.  
Maybe if you could talk her into a rehab and then tell her, you all will take turns being there for her.  It would give you some free nights maybe to recoup and she would come home better off.  She might/probably will need help once she comes home and you all would be more rested and feeling better.....including her too probably.  

Just a suggestion.  Take care and best of wishes.  By the way you ARE smart for planning ahead.  ;~)

(Hugs)  Amy.

599170 tn?1300977493
by Cherie762, Apr 05, 2009 wonderful that your mom has such a great support team, and you realise and are using the diversity of each family members " talents' all will be needed. Your mom likely will need, benifit from a skilled nursing care physility , this is not an Old folks home....i worked in one once as a cna...we had patients from18-well old...but many common needs were things like your moms going through...she will be well enough to leave hospital but likely need some rehabilitation and physical therapy.

Tips,,,,research any place you may send her well. state records of violations are available on government web sites,,,some of these you may be required to pay a small fee like $15. for full disclosure of a number of rehabilitaion places near you....its worth the money....Also if she does go to one of these skilled nursing centers, pop in you and your sibilings un-announced and daily at first until you are 100% comfortable that she is getting proper care...

It will all be ok,,,let your mom think the best it may be her own self-defense psychological mechanism...

675347 tn?1365464245
by ginger899, Apr 05, 2009
My brother and I are going through something very similar, though obviously not the same. I don't actually live at my mother's house, whereas he does, so he is taking more of the day-to-day strain, and he has problems of his own.

We have an array of home care, but the full burden obviously falls on the person who lives there, and believe me it's tough. God bless my brother for all he does, but he keeps skirting round the idea of  'putting her in a home'. I actually think she should be in a nursing home. For her sake as much as ours. We both love her like crazy, and don't want to upset or hurt her, but I am beginning to realize that after these few years, with my brother struggling like he's doing, and me only being able to visit for 2-3 weeks every 5-6 weeks or so, and my mother really needing round-the-clock attention, she would be far better off in a nursing home! People who come on shift at night have slept in the day and are fresh, ready for their night work. People who come on in the morning...the same. My brother, bless him, is trying to do the night shift AND the day shift, and that is impossible. Even with some support which is given by the sitters and nurses who come in for 1 hour to 4 hours 3-4 times a week, and my aunt, who helps as much as she can.  And I am torn between here and there, and trying to impress on him that she needs to go to 'a home' or he will be the next hospital patient!

The reason I'm telling you all this Jaybay, is because I am living at, albeit at a bit more of a distance than my brother, but still in there, right now, and I know how it can get when you try to look after an elderly relative with VERY special needs at home (as your Mom will be after the op.)

It will only be a matter of time before you and your husband (for all your love and your husband's abilities to cope with special needs patients) will be worn to a frazzle.

If she goes to the rehab facility, I do not think you will have failed her in any way. She might not like the idea, but she will have to get used to it, much the same as she has had to get used to a lot of other changes lately. It won't be forever.....

I wish I could help in the pain-management department, but don't know enough about that. It is possible some alternative methods might help her??

82861 tn?1333457511
by Jaybay, Apr 07, 2009
Thank God I can make my appointment with the pain shrink this morning!  I greatly feared I'd have to cancel, but Mom goes to the neurgeon tomorrow afternoon.  I'll push to go in the exam room with her - I didn't with the cardiologist last time.  Mom still doesn't want to think about post-op issues.  Honestly, I believe it's because she's frightened.  Fair enough.  But I need to quell my own fears and have a few words with the doctor.  Never fear, I'll get what I want.  Doesn't mean it'll be enjoyable though.

I really think Mom will push to go immediately home with no interim stop in a rehab facility.  She'll have to experience the horror of spinal surgery herself first to wrap her mind around all the implications of home care.  My Dad was in one for the last 8 weeks of his life.  With gallbladder cancer in every nook and cranny of his abdomen, stomach tube, and an ileostomy (small intestine) bag, it was impossible to keep him clean.  Bags kept popping off, the home had no handicapped features, and he needed 24-hour care.  

There was no way Mom could keep up with that and she refused to let me help.  Wouldn't even give me a grocery list and let me do that much.  Ah well, she's weird that way.  That's why she never gave us kids regular household chores: She couldn't stand to see them done wrong.  LOL!  Ever the martyr.  If I can possibly find time, I'm going to make her a martyr badge with oak leaf clusters and the lot.  I'll need to have it handy in the next few weeks...

I completely agree that a temporary stop in a rehab facilty will be needed; she just doesn't want to face it.  I know it's been percolating in the back of her mind, but she's not quite ready to think beyond the surgery itself.  That's fine as long as I know what the h*ll the doctor is planning to do.

Gotta run.  We had a very late frost/ freeze here in the outskirts of Houston this morning.  This kind of cold is usually gone in early March so this is an odd cold snap.  BRRRR!!!!!  I hate cold!

390388 tn?1279639813
by Me967, Apr 08, 2009
Best of wishes to you today with your Mom.  (HUGS)  Amy

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