Follow
Share

I'm worried about her health and frustrated with trying to reason with her. Caregiving is killing her. As if late-stage Alzheimer's isn't enough, he also has debilitating neuropathy and wears an ostomy. Mom hasn't slept in her bed in over a year and a half in order to keep an eye on him. (Fortunately the neuropathy keeps him in bed.) He wakes every 1-2 hours, removes the bag and rips it to shreds. Thus every 1-2 hours Mom has to get up to clean up the mess--not a quick job. (And Medicare will pay for only 26 bags a month, so this routine is prohibitively expensive.) How do I convince her to start taking decisive actions to move him into a home? She'll do a little something that gives me hope, then suddenly it's on the back burner again. What can I do?

This question has been closed for answers. Ask a New Question.
Freqflyer: Our elderly parents don't tell us the whole story. My mother had the chance to move into senior housing in her town in Massachusetts and when her name came to the top of the list of applicants, she declined without consulting me or my brother! She said "I'm so glad I stayed in my own home." I said "we're not because we worry ourselves sick about you" (I live in Maryland and my brother is in California). I don't understand their mentality of thinking they can stay in their own home into their 90's! That must have been hell for the 70 y.o. man to sleep on the couch! Their is one couple I know who were very proactive. When they turned 67-68-ish, they moved into a one level home. Pretty smart, I thought!
Helpful Answer (0)
Report

Maybe if there is not enough home health help to make Dad's care at home manageable without destroying Mom's health, you could sell your mom a stay in a geropsych facility as an attempt to make Dad better, and then they could be the ones to convince her it is not safe to keep him at home...she could visit as much as she wanted and maybe have a little more of a life than replacing torn up urine bags, changing bedding, and doing laundry.
Helpful Answer (2)
Report

Llamalover47, I really believed that my parents thought they could stay in their house into their 90's.... my Dad's mother did... and she continued to stay even after falling down the stairs and breaking her leg. It wasn't until she had a stroke that she had to move to a continuing care facility.

And my Mom's sister lived on her own [late 90's].. it wasn't until her last 2 years that the sister's son was too exhausted to keep running back and forth to her house that a day time caregiver was brought in. The son [70's], went over at night and slept on the sofa. His Mom refused to move to assisted living. My mom's other sister, who was 88, also refused to leave her huge farm house until one day a family member found her passed out on the floor... she spent her remaining months in a hospital. You'd think it would have been a wake-up call for my Mom.... nope.
Helpful Answer (1)
Report

Countrymouse: I hate to laugh over your "break her neck" story, but could not help it.
Helpful Answer (1)
Report

To address gladimhere's suggestion in her first post: if you do choose to look at ALFs, try googling A Place For Mom U.S. I did that (in Canada) and they were great. They narrow down the choices to only a few so that you don't have to wrack your brain (which is already quite wracked, I assume) trying to decide amongst a dozen options. The service is free and you don't have to make a decision on the spot. I decided to wait, but I know that I can email/call them any time.

Just a thought. You may not want to try that route yet (but do remember that forewarned is forearmed).

You are in a pickle -- good luck to you.
Helpful Answer (1)
Report

More power to those that are able to remain in their homes! Especially if they are able to live independently! Yes some need help, but some do not. In fact, we have a neighbor if not in her 90's very close to it. She is very spry gets along very well even goes out to trim her juniper bushes and other yard work.

This woman was a very good friend of mom's. She has witnessed mom's decline over the years and knows moom wanted to remain in her home. Then mom remarries at the age of 80 to a man that would have been ok to move to assisted living. But, he married a woman that had already begun the long slow descent into Alzheimer's. He knew the only way for them to remain together was in the home, so that was what he wanted to do, with the necessary and appropriate care services in place. And we were able to do that for four years. Enter a terribly dysfunctional family that most of which were in denial of the care needed.

They received excellent care at home, provided by me. Twisted sibs became very vindictive and hateful probably due to the guilt they were feeling from not offering to assist. It was easier for them to believe that the arrangement was somehow financially lucrative for me. HA!

So twisted POA determined that it would be cheaper for mom and hubby to live in a facility. HA, again. Mom was spending about 5K monthly at home, actually they both were. Now TS2 moved mom so L followed, mom in memory care at a cost of about 7K a month and L an additional cost of about 5K a month in assisted! And this doesn't even take into consideration how much the private 24/7 caregiver was paid as it was necessary for mom the first six weeks she was there. So add another 10K a month. And they were doing wonderfully at home and were happy together.

I had also tired of fighting the continual onslaught from the twisteds. The endless accusations. If it wasn't financial in nature, it was related to health and how I was not providing information related to their health. Nothing could be further from the truth. In fact, they even put their own twist on information I provided. A series of TIA's for L became strokes and seizures as those freaking twisted sibs of mine would stop at nothing to try to make me look negligent, or at the very least, a liar! Little did they know I had a team developed that included neighbors, medical professionals, therapists, conservators and guardians that all agreed the care was excellent, there was nothing financially lucrative about this situation for me, in fact the complete opposite. And the best part for the folks? They were able to be together in their home in a situation that worked very well.

When the move happened twisteds and others tried to convince L that he would be seeing even more of mom since she attended a day program. Well, true for a few days. By then L became so exhausted from becoming Mom's 8-10 hour a day caregiver and until Mom was hospitalized because her behaviors were unmanageable for him or staff.

They would have been fine remaining in the home, and that was what they both wanted. But it was more important to twisteds to get me out of there so they would not have to deal with their guilt.
Helpful Answer (0)
Report

Well caught!

I will privately admit to wanting to throttle my own mother over this issue. Her sisters both wound up their respective careers and family responsibilities, downsized and moved into very nice sheltered apartments. My SIL's mother cared for her AD father until he died, then moved into retirement housing to play bridge and avoid my SIL (if you ask me). Three shining examples under mother's nose of how to plan and manage your golden years, and what did she have against it I'd have liked to know?

Should've taken a leaf out of my brother's book and said if she wants to fall down the stairs and break her neck then who are we to stop her...
Helpful Answer (1)
Report

Countrymouse: I agree with you completely! My Mother waited too long to make any decision and she was none too happy to see me arriving after driving 10 hours.I even told her "you waited too long to make any decision about your living arrangement." Of course, the "living in place" plan was what we were going with by filing for reverse mortgage, until that plan went out the window. Not enough time to get into, but I got that app filled out, notarized and in the mail in a 24 hr turnaround!
Helpful Answer (2)
Report

I've got to take issue with that, Llama, if only because one of the most problematic areas of all is elderly couples who won't admit to needing help *because* they are afraid of being moved out and split up. Well, they're not wrong, are they? Too often that's exactly what happens. So they leave it too late, they don't get any help, and the net net is that one gets carted off to the NH and the other goes into LTC.

Without trying too hard, I can name one couple and at least four relatives who stayed at home and independent well into their nineties; plus two ladies who are currently doing exactly that. The trick is to provide services that not only aim to keep older people at home, but are seen and known to do that. Then older people won't be afraid to access them.

There is nothing intrinsically wrong or foolish about wanting to stay in your home, where you have devoted time and trouble over decades to getting things exactly as you like them. It doesn't make any difference how nice a facility or care home is. It's not home. I think back to helping a friend to pack up his things from his family house after his mother had been moved into care, after a bit of a struggle. In her sitting room, from her chair, with her needlework basket beside it, out of one window you could see her garden and out of the other the church where her husband was buried. Not my family, not for me to say, but I thought about what it would have taken to keep her there and the truth was that it wasn't impossible, it wasn't prohibitively expensive, it was just much easier to move her out. Saved all that tail-chasing getting social services involved, paying for support, worrying about her, having to deal with it - ship her out, and then all you have to do is write a large cheque and visit twice a month, internally grumbling the while about your inheritance going down the drain. Don't worry, I held my peace! I just thought it was a shame.

With our parents' generation, unfortunately, it's a case of having 20:20 hindsight; but we've got no excuse. Planning to move into care is a good idea, I just wonder if we'll stick to the plan when it comes to it. We might find our own armchairs have got too comfy to leave.
Helpful Answer (6)
Report

Freqflyer: I am glad that your dad got help but so sorry that mom did not give up her secret. Who really (a husband and wife) can stay in their home without problems until their 90's?
Helpful Answer (0)
Report

First, I will say that ANY situation involved with caregiving is not whining. It is your reality. No one else can make the decisions for you since no two situations are the same. As several others have already commented, really this decision is your mothers. As much as you don't like that answer all you can do is try to help to the best of your ability. Another good point someone mentioned was hiring a Care Manager. This person can provide information on where to look for help and in the very least provide options to help you make decisions for you and your immediate family. I don't know if this is possible but are there any facilities where you could move both of your parents and they receive care? That way your Mom would have assistance but still feel like she is in control. If they want to stay at home then the best thing you can do is hire additional help for your Mom for her "job" - the cleaning, cooking, etc. She could take naps during the day and plan to be awake at night. There are options, just some come with a price tag or resistance. I strongly recommend a Care Manager to help you make decisions.
Helpful Answer (1)
Report

Can you find a facility that would accept both of them, so they could still be together as much as possible? An uncle of mine with heart issues and developed Alzheimers was able t move into a facility where his wife with mysthenia gravis also lived.
Helpful Answer (0)
Report

ohreally, my parents lived together in their single family home up into their 90's... it wasn't until recently when Mom was placed into a care center that we fully realized that Mom wasn't taking care of herself, Dad, or the house. They hid that from us.

Now that Dad has caregivers watching him 24 hours a day, over the past month he has gained much needed weight, he is brighter and now walking with his walker much better. Sadly it was my Mom who was dragging him down by not admitting she couldn't do all this work on her own.

If only they would have moved to a retirement village and had accepted help maybe, just maybe, my Mom would still be enjoying her twilight years with Dad. So it is something to think about. I know I won't continue living in my single family home, I want that retirement village where I can enjoy everything it has to offer :)
Helpful Answer (0)
Report

We watched my mother in law nurse my father in law through 18 months of congestive heart failure and dementia. She must have lost 30 pounds and we became concerned for her health, thinking that if he didn't pass soon she would before he did. He did enter a nursing home eventually and she was there every day. None of us knows what we would do for sure till we are faced with it. My husband's and my goal is to be in our home until we pass away some day. But we don't know for sure what that might end up meaning. I told him to day that we need to speak in 90% sure with a back up plan terms. But we all do need to respect what the wishes are of a couple as they age because we will all be there some day.
Helpful Answer (0)
Report

Chuck, you say that Dad is on medication, but it's ineffective, try having the dr change his meds. What works great for one person may not work at all for another. And with dementia patients what medication they need is unfortunately determined by trial and error.
Helpful Answer (1)
Report

What's going to happen is that two older people need help. We all will get there should we live long enough. Sadly, the lucid one, you, has to take action for their care now.
Helpful Answer (1)
Report

Restraints both physical and mental (medication) are not legal anymore, so I hope your mom knows that. Has she ever visited a Memory Care unit?

I would be concerned that your dad's mental anguish was not being properly treated though and would work on having that addressed. Does you mother understand that his anxiety must be very scary to him?

How do the grandchildren respond in this situation and does your mom have any time to spend with the grand kids?

The medications I have seen for anxiety have not produced sedation. There are other options. I wish you all the best.
Helpful Answer (3)
Report

Thank you everyone for your thoughtful responses. Several of you caused me to look at the situation from new angles, which has been insightful.
In response to some of your concerns: Yes, Dad is on medication but it has been largely ineffective. The most significant responses he’s had have been extreme lethargy and increased irritation. His doctor has ruled out UTIs more than once. As for sanitation, as he is bed-ridden the messes he creates are limited in range. Mom is very thorough after each bag-removal episode. She also understands that I will not come in physical contact with him or his bag. The most I can do while I’m there is try to distract him from the bag. When I am unsuccessful, the mess has to wait for her return. No, neither of my parents is a veteran. Finally, I was disappointed to find that PACE is not available in my state (but I will be writing to my governor about it); it sounds like a wonderful program.
I want to clarify that I am not angry with Mom, just frustrated. Even if she holds out for some time to come, I will not abandon her. She in no way demands that I help her. It is taxing, but I do not mean to imply that I do not (currently) have the capacity to manage it. Indeed I use the brief time we are together on my visits to encourage her and inquire about her progress on the Dad Front, not to mention using the visits as a check on her well-being. I described my little rant as “whining” because after reading several others’ stories here on this site, I recognize that my situation is not even in the same ballpark as that which others have to endure. Nevertheless, it did feel good to get it off my chest.
I think her reasons for stalling on moving him into a nursing home are varied and complex. It occurred to me while mulling over your feedback here that perhaps part of her reasoning is fear that I will not come around anymore if she no longer needs help with Dad. I will assure her at my next visit that this is absolutely not the case. In fact, my time at the house will be all the more enjoyable for not having to see my harried mother going nonstop to tend to my miserable father. I also suspect she is concerned that Dad will be sedated and/or restrained to deal with his behavior in the nursing home--most likely sedated, as he can work his way out of restraints. I believe this may very well be the case--and quite frankly I would not object.
Thanks again to everyone.
Helpful Answer (3)
Report

ChuckWestern, oh how we hate the decisions that our parents make. I know your Mom is in denial and she probably is from that generation where it is her job to take care of her husband no matter what.

I is dealing with something similar... my Dad is a major fall risk and Mom refused caregivers or any strangers to come in the house to help, and I am a senior myself so I was limited on what I could do to help.... thus that denial is now causing the death of her.... she become so exhausted trying to do her "job" of cooking, cleaning, laundry, etc. that she started falling and a major fall now has her bedridden, not knowing where she is, or even what year it is. So sad.

Thus, feel free to us my example when talking to your Mom. I hope it will be an eye opener for her.

Even though my Mom is slipping away, she is safe in a continuing care center, and Dad is at his home with the same caregivers that my Mom had asked to leave.... I am finally starting to sleep at night after being wide awake for the past 6 years !!
Helpful Answer (4)
Report

Phew. Difficult.

While negotiations are ongoing, you could ask a continence care specialist nurse (ask whichever team takes regular care of his stoma if you don't know of one) to advise on better products. Looked at from his point of view, he wakes with an uncomfortable foreign object attached to his body and removes it. He can't reasonably be expected to grasp in the moment why he shouldn't. I don't know, but maybe there are ways and means of preventing this miserable routine for your poor mother - it can't hurt to ask. And while you're at it, see if you can't get this person to argue with Medicare. I once had a similar type of Kafkaesque conversation about incontinence pads, working out how much urine my mother was permitted to produce daily and what implications that had for keeping her hydrated; but it wasn't quite as unreasonable as 26 stoma bags per month. Who the heck came up with that? And what do the manufacturers advise on hygiene??? If you can get a good fierce nurse on the case maybe it would help.

Your mother stalls because she doesn't want to move. And while we can sit here and weigh up the pros and cons and rights and wrongs of her choice, that's what it comes down to. And it's her decision to make. Doesn't mean you have to comply or enable - you can fold your arms and insist she find more formal support - but you can't, as you know, just force her hand. As an exercise in patience, ask yourself: would you want to? It is hard to motivate yourself to do a practical thing that is, all the same, extremely unappealing; especially when it signals the end of your married life, effectively.

Hypothetically, would your parents have the space and resources to afford live-in help? Even in the short term? Because ironically enough, if your mother were less exhausted and desperate she might be in a more positive frame of mind when it came to planning ongoing care. I'm sorry for all the worry you must be going through, hope there's progress soon.
Helpful Answer (4)
Report

It's hard to be in her and in your situation. She's seeing her partner decline and probably feels it's her duty, her commitment to marriage vows, to care for him until the end. And the situation is not helping your worries. Something is holding her back and she should tell you what her concerns are. Tell her the physical and emotional stress she's now under is also now putting her own health in decline. The science proves it. Caregiver stress accelerates our decline! The lack of sleep will catch up to her and she could potentially - and unintentionally - make a medication error, make a bad judgement call, or something else while putting your father's health in jeopardy. You may have resort to legal action. I know it's ugly but your mother may soon die or develop a stroke from the ongoing stress. Are you willing to step in and care for her if she were to become incapacitated while your father is in a nursing home? Tell her this may happen and it's not fair to you to then be put this position. Tell her you won't take care of her because you have to work, to pay bills, to put food on the table and that she'll be going into nursing home. I know this isn't the greatest approach but she needs a wake-up call.
Helpful Answer (2)
Report

ChuckWestern, based on the details of your situation, I would be very blunt. I agree with other posters about setting it out straight. You have a full plate. You do not need the stress of having to deal with an aggressive senior with advanced dementia acting out in the home with a senior care giver. It's not even a close call. It makes no sense. He needs to be evaluated by doctor for medication. He doesn't have to live that way. But, at any rate a senior female, being able to manage a male advanced dementia patient in the home is extremely challenging. If you are going over multiple times during the week, it's not working.

Your mom knows how difficult this is, but she is resisting. I would insist that he be placed and if she refuses, I would seriously consider legal action. I'd see an attorney so I knew where I stood. Your mom sounds like she's not thinking very clearly.
Helpful Answer (3)
Report

PS, you are NOT whining. YOU are not being selfish.

Frankly, it sounds like your dad is getting less than optimal care at home. All that flinging of ostomy bags can't possibly mean he's living in a pristine environment (let's not even talk about the impact of that upon you, your infant and your immune - surpressed spouse).

Why isn't he getting medication for his agitation? Does mom think he ENJOYS being like that? Antianxiety, antipsychotics and antidepressants meds can do wonders. I'm not talking about simply sedating him, I'm talking about treating what's causing the agitation.

One of my aunts resisted b putting my uncle in a memory care facility until her kids discovered that uncle was beating her black and blue so he could get the key to get out of the house and wander. He was finally placed, at their insistence. Aunt died a few months later of a massive heart attack.

Uncle lived on happily in memory care for several more years.
Helpful Answer (3)
Report

Unfortunately, not much you can do except be supportive. If mom is competent and POA, then all decision making is hers to make. I think many of us feel for the caregiving parent as we can clearly see they are emotionally and physically worn out; yet continue. Many older parents take their vows very seriously and think asking for any help or placing in residential care is being selfish or not true to "for better or worse". The only thing you can do is to continue to support her decisions and planting the seed that "maybe it would be best for you and dad to get some extra help in at night, etc. so that you can be more of a loving wife and spend quality time with dad vs. just caregiving. She may eventually allow you to help her find outside help. Do they have money to pay for some night time CNA hours in the home? I know its expensive; but might be worth looking into. Also, VA benefits (if dad or mom was a veteran) may also be able to offer financial support.

As for you; you aren't selfish to cut back on helping mom. This is what she has chosen and she has the resources to get in some help or assistance likely. It's not up to you to take up the slack. You need to be there for your husband and baby and that is the way its supposed to be -- especially when we live out of town. I think driving up once or twice a month is about all you can do. The other sibs might be able to swing an overnight to help mom one weekend a month.

I'm so sorry you are going thru this. YOu seem like an extraordinary wife, mother and daughter!

Be sure to give yourself a break and not feel guilty.
Helpful Answer (4)
Report

Gee. I'd sit down with mom and say " mom, i can't do this anymore, my husband and baby are more than a fulltime job. You're probably not thinking that you're being selfish , but that's what it comes down to, selfishness.. taking me away from what i need to be doing. Dad needs to be in a facility, because if you, mom, die or become disabled, you're leaving ME holding the bag."

In your shoes, I'd be angry.
Helpful Answer (4)
Report

Chuck, you have your hands full! Another thought find a Geriatric Care Manager that will do an assessment of mom's and dad's needs. The bonus is, based on your folks situation, GCM will make recommendations of places she thinks suitable.
Helpful Answer (1)
Report

Thank you for the reference to PACE. I will look into it immediately.
Yes, Mom has in-home health aides twice a day (when they show--my father is belligerent and has been physically violent with the aides, so he is a client most of the workers avoid). Also, I do stop by the house three times a week so she can run errands.
I have begun to research nursing homes online but have not yet been able to narrow down the options—it is so overwhelming! My aunt and my sister (and undoubtedly other relatives) have broached the "What if something were to happen to you..." subject with my mother. My sister would have POA. Directives have been arranged.
I know it's whining, but as I live 45 minutes from them (but closer by 100s of miles than any other family member), stopping by three times a week is taxing. (Full disclosure: I am the caregiver for my husband, who is battling advanced cancer. Because the cancer has permanently disabled him, I am also effectively a single mother to our infant (he was diagnosed hours before our son was born and immediately began radiation, chemo, and adhering to severe physical restrictions)--although he can help me parent more now, several months after his first transplant, than he could before (thank goodness! I don't know how single mothers do it.).) Pity party over. My point with the whine is that although I know the gravity of my responsibility as the nearest family member, there are equally strong pulls in other directions that have in the past and almost definitely will in the future need to take precedence.
At this point it’s a matter of getting her to admit the current situation is untenable in the long term—and that her health and well-being are valuable beyond the care she provides to my father. My concern is for her and her physical and mental health.
Thank you again for referring me to PACE.
Helpful Answer (1)
Report

PACE is Program of All Inclusive Care for the Elderly.

You are right, Mom will get to the point that either she will get sick or have some medical issue arise so she will not be physically able to care for him. You may want to try to ask her what the plan is should aomething happen to her. Atr his legal affairsin order? Start out by shopping for a place for dad to move, YOU do this, so your Mom is not having to expend the energy of going. She has enough on her plate. Then you narrow it to two or three options that YOU will take mom to see. Nothing would be worse than something happening to mom and not have a backup plan in place with not a clue what to do. And it sounds as if that responsibiliy would fall you
Helpful Answer (3)
Report

If your mom continues, she will likely get sick herself and not be able to continue his care. As long as she is competent, I'm no sure how you force her to have him placed in a rest home or Memory Care unit. Will she allow someone to come in daily and help her? Are there funds for that? You might check with PACE in your state. They provide help for those who should be in a nursing home but remain in the home.

I don't know much about an ostomy, but it sounds like it's not healthy for your dad to be removing and tearing it up. Can your dad get some medication to help with his anxiety? Also, what if he wore an adult onsie, that buttons in the back. He would not be able to get his hands on the bag to remove it. That might help a little.

I think I might have a serious sit down with your mom with all the siblings and be very serious about your concerns. If you feel real strongly, you might say you are going to seek guardianship and have dad placed for his own welfare. She may call your bluff, but maybe she will agree if she thinks it has come to that.
Helpful Answer (4)
Report

This question has been closed for answers. Ask a New Question.