Advice needed on caregiving

[AR-10]

My wife and I have been living with her mother for four years now.

My FIL dies four years ago, and my MIL depended on him to do everything for her. She hasn't been shopping in fifteen years, and only leaves the house to see doctors or get her hair done. This by her own choice, and really boils down to laziness.

She is 83 now, and her attitude is "I worked hard all my life (about fifteen years, actually), and now I want to do what I want to do".

What she wants to do is lay in bed twenty two hours a day and have meals on a whim. Her husband catered to that desire for several years, and my MIL was often sick and bedridden because she was eating at odd hours and her medication schedule was completely messed up.

He finally died prematurely from trying to care for her, and we took over. Since she gets around with a walker, it was not possible to move her in with us, so we moved in with her.

The first thing we did was put her back on three meals a day, with snacks as wanted or needed. She hated that, and it is still a daily point of contention.

She takes heart meds, SEVERAL pain pills, vitamins, and other meds I haven't paid enough attention to know about. The point is, most of her meds require food at the same time. If she is eating regular meals, it is much easier to give her the meds at the proper time and in the proper way.

Her health has improved tremendously since being put back on a routine. However, she has started to develop dementia, and her short term memory is very bad.

She has the most annoying tendency to look for the bad in everything. If it's a cloudy day, she wonders about the impending storm. If it's a sunny day, she wonders about the impending storm. if she asks about the grandkids, it always progresses into the negative, annoying, depressing things. "Is she a good wife? (No) When will they get married? Does she cook for him?

She looks for the bad in EVERYTHING, and then fleshes it out until I get quite annoyed. If we try to turn the conversation positive, she changes the subject and finds something else inoccuous to go on about how terible it is.

She loves current events, because there is always some tragedy to  discuss. Every time some girl comes up missing it is a week of tongue clicking and speculation. The war, any war. Hillary Clinton. She hates her, and obsesses about what would happen if she gets elected. On and on and on.

It sounds like I am bitter and totally unfit for my role in helping her, but all the negativity is getting very stressful. The fact that she forgets she has covered the same agravating Hillary rant twice today already does not make it any easier to listen to again.

We are supporting her financially as well as caring for her. My wife does all the cooking, cleaning, bathing, etc., and her mother spends most of the day lying in bed watching TV. She could help a little, but she doesn't want to.

Needless to say, she is not getting any exercise, and after almost three years of trying to get her to do simple exercises to keep her muscles from atrophying, we have given up.

The reason I am posting this thread, ironically, is my concern for my wife. The stress that is oozing from my fingertips right now is nothing compared to what my wife is feeling.

She wants to do what is best for her Mother, but the last four years have aged my wife considerably. She is getting less and less tolerant of her Mother's unwillingness to do anything that is good for her, and every meal turns into an argument about whether her Mother ate two bites, or three bites. Her mother acts like a child, and my wife treats her like one.

This is not the way it should be. It is not the way it has been. But it is the way it is now.

I act as a buffer and that helps, but the way my wife is reacting lately is not good, and she does not even see it happening. She needs more than time out with the girls or a weekend away. She needs a support group or something.

She has spoken with someone at Human services, and someone from Hospice, and is going to be attending a support group for people who have lost their parents, but I'm not sure that is going to bear fruit.

She has realized of late, and expressed to me, that she is angry at her Mother for killing her Father, which surprised me but also made perfect sense. Maybe the support group will be able to help her work that out.

I'm not sure why I'm posting this.
Maybe I'm looking for a support group?


I could post three more posts this long to explain the entire situation, and maybe I will.
Just looking for someone to talk to, I guess.

[caregiver222]

It's hard. My first two cents worth is to let her eat when she wants, and forget about the "three meals a day". It appears to me she is being bossed around for no good reason and expresses resentment by being a pain-in-the-neck.  Getting nutrition on board when the person wants to eat is more important than a schedule. This is how I solved the problem. Get a little refrigerator for her room (about $75) and make the meals up in the morning, plus snacks, and put them in the little refrigerator. Then get a small microwave ($150) in the room for her to heat the food when she wants. The more participation she has in the situation, the better. I sense a lot of resentment here, probably justifiied, but counterproductive, and a festering sore. I think you should have looked for special houring for the elderly before moving in. This may not be available in your area. There is often a waiting list. These have private apartments set up for assisted living, daily visits by a nurse, a common area for people on the floor, daily activities, and in my area have a rental rate set at 25% of your monthly income. She doesn't qualify for hospice (usually a six month time to death is a requirment). If you are in the United States she may qualify for a part-time home attendent. It bothers me somewhat that you "moved in to take care of her" and yet she has "pain pills, heart meds, etc. you haven't bothered to find out about." Think about that statement. Unacceptable.  If you didn't want to take responsibility for her you shouldn't have moved into her home. You have been through a lot of stress and psychological pain from this situation, but you posted and that's my take. It is very labor-intensive to take on the responsibility of caring for someone else. It can occupy your entire existence. There are some people who are "psychic vampires". And they can be elderly. They drain your energy. If you are in this situation, you need additional help. Look around for a college student (preferably nursing) who will care for her a certain numnber of hours a week in return for room and board. Everyone in life has a cross to bear and we are all dealt different hands. Some good. Some hands bad. You are not a bad person and the situation is structured in such a way as to be very stressful. As far as this business about micromanaging her mother's life and getting into arguements about "one bite, two bites," I see an elderly person who is near the end who is trying to assert control by the simple method of "saying no". And all of this seems to revolve around the imposed "three-meal regimin". It appears you and your wife have reached the end of your rope. As much as I hate nursing homes, there are semi-nursing assisted living facilities available in which your patient may be much happier.  I am not sure what assets are available or what kind of assisted living facilities are around. As far as this business about "dying prematurely because he cared for her", I have heard that before and I don't buy it. I see so much anger and disguntlement and marital arguments hidden behind your post, it isn't funny. I can't tell you what your responsibilities are to this woman you are caring for. But there is no half-way. There are professionals involved in the social services business. You need to interface with one of these and see what government assisted car you can get and what care alkternatives are available. Then tally up all assets, and make a decision. If she has a go consider a reverse mortgage to pay for a full time live-in aide, and think about you and your wife moving out. You are under tremendous pressure and I don't want to seem to make your life any more difficult or make you feel bad. But this is a bad situation that will only get worse.

[AR-10]

As far as my ignorance of her medications, my wife takes care of that very well, and her own. It's all I can do to tell you from memory what medications I am on.

My MIL is on three different pain meds, and they MUST be taken with food. Every meal has pain pills. Bedtime snack has pain pills.

When her husband was alive, she was taking her pills whenever she liked and ate whenever she liked. My wife tried to straighten that out back then, to no avail.

My MIL would go a week at a time too sick to get out of bed with a potty next to the bed, and her husband caring for her and letting her take her pills with no food and bringing her bread and jelly at three in the morning. Which was why she was sick and in bed.

Now that her husband is gone, she really wants to be with him. Nobody wants to die, but part of her wants to die.

I can relate to that, actually.

There have been times she has tried to starve herself, and meals are always an issue. It's like she has a sub-concious phobia of food. But she'll get up in the middle of the night and eat a half a jar of jelly.

Or bread with butter and salt on it.

I found her one afternoon eating raw ground pork at the fridg. She insisted she had been doing that all her life and it was perfectly fine. I told her she couldn't do that, or she would get sick. Two hours later she was sick.

She needs supervision in the eating department.

It's about control, no doubt about it. It's one of the few things she has control over in her life. That, and how she chooses to spend her time.

Between the need for regularity and the need to administer drugs correctly, a practice of eating breakfast, lunch, and dinner at regular, normal hours is not a terrible thing.

It's when she eats two bites of green beans and one spoonful of potatos and then takes three pain pills that it becomes a problem.

It has turned into a much longer term situation than I first imagined. The way her health was when her husband died, I didn't think we'd be living there for a year.

In fact, we lived out of suitcases the first year while our house sat empty, but with all of our stuff in it. But my wife got her mother's meds and eating straightened out and she got healthier.

At first it was fine, and everybody was family. But the last year or so my MIL has gotten very bad about eating, and she has gone through bouts where it is obvious she does not want to eat at all. My wife has drug her through those times and now it is often a contest of wills.

And I'm in the middle.

My wife won't let my MIL starve to death.
My MIL is lucid enough to know what she is doing 80% of the time, and she is strong willed.

It's no fun anymore. My wife has been under an incredible amount of stress for two years over my health. She needs a relief valve, and I'm not filling the bill.

We could put her in a home. The nursing homes around here are horrible. That's why we're living here. Her Mother deserves better care and living conditions than that.

She can get around fine, and enjoys looking out the picture window and kavetching about the weather. She can handle the bathroom alone 90% of the time. She just needs supervision and assistance. It's not time to put her in a home.

It's time to figure out how to help my wife keep from going nuts.

We don't have marital arguments. She has gotten angry with me a couple times the last few months for the way I "buffered", but we don't have arguments. We have dscussions and express our thoughts or frustrations, but we are of the same mind as far as the current and future course.

We are doing the right thing. Maybe not all the right ways.
But it's not easy and bouncing ideas off of other people is one way to make it easier.

[caregiver222]

I shouldn't have been so hard on you. You have a situation which may have no answers. If possible you need to get a third person in there providing some assistance. In the United States a part time helper is often available through insurance. If not consider a reverse mortgage to find an aide. Remember if she goes into a home they will confiscatre all assets in return for taking care of her. While she is sentient you should get her to sign a health care proxy, if she agrees. I wasn't suggesting a home. The assisted living facilities are quite different. My mother (not my 103 year old sweet-heart) got into one of these complexes and enjoyed herself immensely. She had her own apartment, plus there was a pull cord to get 24/7 assistance in all the rooms, and a community room in the building, plus a daily visit from a health care professional. She had a years wait to get into this facility, which was restricted to residents of her geographical area and sponsored by a religous organization with federal funds. It was non-denomenational. There are other alternatives to nursing homes.

[AR-10]

There are alternatives for the well-heeled.

Assisted living facilities are expensive.
We have two, both connected directly to the hospital. One is for the resident that is fairly self reliant, with accomodations for certain limitations. The other is for those that need more hands-on care, but less care than many in nursing homes require.

They are both very expensive and out of reach for a person on a fixed income.

My MIL's SS covers her house payment, taxes, and insurance, with about $50 a month left over, which is "her" money. We pay all the rest, including her medications and her own seperate phone.

We moved her folks up here from Oklahoma City in 2000, and they purchased this house with a low interest loan. There is very little equity in it, and frankly I don't care if the nursing home ends up with it or not.

My wife has legal and medical power of attorney for her Mother. The house has been put in a trust, which does not shield it from the nursing home.

Home Health Care isn't really something we would benefit from at this time, because my wife is willing to and capable of bathing her Mother and taking care of the house. If we had someone coming in an hour or two, or four, a week, it would be to socialize with my wife and my MIL. Maybe that would be a good thing, but it's an expense we can't afford at the moment.

In hindsight, moving in was a terrible idea. We did it out of love and compassion, and with good intentions, but several situations have changed, and we find ourselves in a rather precarious spot now.

Our house, which sat empty for three years, is occupied by my son and his young family. They are renting for the moment, with the intent to purchase it soon.

If my MIL MUST go to the care center any time soon, we will be looking for a different place to live. She could chug along another four years as she is now, or she could wake up with a dibilitating stroke this morning.

Nothing in life is secure or guaranteed, but that is a little less stability than I would have chosen with foresight.

Moving in with her short term made perfect sense. I honestly thought it would be very short term. As time passed it slowly morphed into something more complicated and permanent.

Had I known the toll it would take on my wife physically and mentally, I would have been ruthless and her Mother would have died in a nursing home three years ago.

Between my own poor health and the fact that every time we leave the house together her mother does something naughty, we have no social life any more.

We don't visit friends, they don't visit us. We seldom go out to eat. "Shopping days" or weekend outings are infrequent.

It's no huge mystery why my wife is short tempered or impatient. She needs an outlet. Emphasis on the OUT. I just don't know how to help her.

This whole post is about me, about "we". My MIL is getting along fine. It is us young ones who need the help here. We are the ones in an increasingly difficult situation. My MIL is lying in bed blissfully sleeping. We're the ones who need help, not her.

She's getting all the care and attention she needs, albeit sometimes the assistance is provided tersly of late.

I'm looking for tools or coping skills to help my wife and I survive this. I don't want my wife looking back on these years after her Mother is gone and wallowing in grief because she had her buttons pushed by her Mother so many times that she grew to hate her.

It's not like we are the only ones doing this. Well, nobody else in this town is doing it. People have been doing it for centuries.

The only real difference in our situation is the fact that we moved in with her rather than her moving in with us. Under the circumstances, it was required. Our house was not a practical living situation for her. It has, however, complicated things quite a bit.

I'm just venting, looking for suggestions, and venting.

[seyf]

Your situation sounds intolerable. Here is the way I see it:

Your job as a husband is to protect yourself and your wife from the insanity of this situation. Your wife sounds like she is on the verge of a total break-down, and no one should have to live this way.
Your MIL sounds like a master manipulator who enjoys being the "queen" of the household and pulling everyone else strings like puppets. She is being unreasonable, uncooperative, manipulative, and selfish. This does not sound like it is part of the dementia because it sounds like she has always been like this, and she got away with it with your FIL, and now she is getting away with it with you and your wife. You cannot control her, but you can control your response to her and limit what you are willing to do for her. She should be doing as much as she is capable of for herself, not being waited on and catered to like she is on vacation in a 5 star hotel. People like this can totally suck you dry, make you sick, ruin your marriage, and they make it seem like it is you, not them, at fault.

There are several caregiver organizations that you can access online who can help you find a caregiver's support group. Just do an online search for caregiver organizations and you will find them. You and your wife would probably benefit immensely from seeing a therapist on a regular basis to help you set boundaries on her demands, control issues, and manipulations, and to help you figure out how to get out of this house, either permanently or on a regular basis for some positive experiences and interactions. She is consuming you, and dealing with people like that is extremely difficult. She won't change, but you can change your response to her and say no to some of her demands.
You can refuse to talk about negative issues, change the subject, or just walk away and not be around her (but tell her why, so she has the opportunity to think about it.)
She may be depressed and one of the symptoms of depression is a negative outlook on life and everyone and everything about it. She should be evaluated for depression, and treated for it if that is the case.
Go to the library and do a subject search on personality disorders- narcissism, borderline personality, etc. Look also at dependancy and dealing with manipulative people. See if any of that info fits and check out some books.
Hire a high school helper to come in several times a week for 2-3 hrs. to get out of the house and away from her. Make a rule that during that time, you do something enjoyable, and do not discuss her or the situation. Just focus on fun, your relationship, and your freedom. If at all possible-move out and get a live-in in exchange for room and board. The money you spend on help may save your sanity and health. High school helpers are often happy to have an after school job, even at minimum wage. While they are there, they can empty the dishwasher, straighten up, fold and put away clothes, dust, water plants, etc. Six to eight dollars an hour is reasonable for your escape times.
They can do those things and still talk to your MIL and keep her company.
Does your wife have any siblings that can come care for your MIL so you and your wife can take an actual vacation?
I would have a serious discussion with your MIL and give her the tough love approach. I would give her jobs to do, like fold clothes, etc.and make her responsible for taking care of herself in every way she is physically capable of. It sounds like you are doing way more for her than need be and enabling her dependancy on you, much like a spouse can enable an alcoholic to keep drinking. This is destructive behavior, even though you feel like you must help her, take care of her, and feel guilty if you don't. If you expect something from her, she may rise to the occasion and feel more productive and happy.
I wish you luck and fortitude. Don't remain a slave to her and ask for help from other family members if your wife is doing it all and there are others who could pitch in.