Dad really needs to be in a nursing home, but Mom keeps stalling. Any advice?
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?
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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.
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
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.
In your shoes, I'd be angry.
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.
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.
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.
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.
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 !!
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.
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.
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 :)
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.
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...
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.
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.
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.