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Or, if you managed to get them to go...how?!!

Need to give you some background first so you can see that this is already an uphill battle!:

Mom is 80 years old and has had dementia for two years now. It has progressed pretty rapidly. Neurologist said it's probably Alzheimer's. Looking at the stages, she is probably in stage 5.

I am an only child. My only family is mom and my two children. Mom's whole existence revolved around my dad. He passed away unexpectedly in 2005. Since then she has stuck like glue to me. Sadly she never really made a separate life for herself. It was always about dad and me. And now it's just about me.

She is denial that she has dementia. I know, no shocker there, right?! She was in denial (even before getting the dementia) that she has fifty percent hearing loss. It was always "if other people looked at me when they speak and spoke louder it would be fine." She has hearing aids but refused to wear them. And now, with the dementia, truthfully, I don't even bother to beg her to wear them. I'm worn out. Plus, she could quite easily put it in tissue paper (as she has done before) and then lose it.

She has a rollator duet for outside the house (four wheels with a place to sit too). There is one rolling walker upstairs and one downstairs. She has fallen several times in the past and I have begged her to use them inside the house but she insists that she doesn't need them and tells me to stop treating her like a three year old by asking her to use them.

So..here's the issue. Although mom has her own house about 10 minutes from mine, she is now staying with me. She would fall, on average, about two to three times a year. Each fall would result in a breakage required hospitalization and subsequent nursing home admittance for about one to two months. She would then stay at my house for one to three days and then go back to her house.

This last fall was different when she came out of the nursing home. I couldn't send her back to her house because she didn't seem strong enough and I was worried about the dementia.

So here I am two months later and yes, she is stronger now. Still would love it if she would use the darn walkers in the house, but hey, that's another issue. However, her dementia is still prevalent. Every few minutes, the same questions over and over again. Some confusion also.

I am stuck. Mom wants to go back to her house. But I really don't think that would be a good idea with the dementia. And no, there is no one else who can stay there with her. I have been waiting on her hand and foot here, trying my best to make her comfortable. Everything from help dressing, undressing, toileting, showering, putting on her toothpaste, putting her shoes in front of her, etc etc. It is bloody exhausting. However, the dementia is even worse to deal with. That is what drains me. She is very grateful, until the dementia occasionally rears it's ugly head like a couple of days ago, when she said she would "rather be dead than live here." She thinks I am not giving her her independence because yes, I am GUILTY AS CHARGED of saying "mom, don't forget to wash your hands." and I wait to say it as she is walking towards the door, it's not like I'm not giving her the chance to do it, know what I mean? And yes, I also have said "I've put toothpaste on your brush here for you" because she forgets to brush her teeth. Now most of the time she will thank me but sometimes she says "you have got to stop treating me like a child." It's like a no win situation. If she doesn't wash her hands after going to the bathroom, she gets UTI's and then c-diff and none of that is fun.

But here's the problem. I can't take it anymore. It's killing me emotionally. I am a hundred percent convinced that I will die of a heart attack soon or get dementia soon also (already showing mild symptoms of it due to the stress). I have two caregivers for mom and still I do 56 hours a week. My house is a mess. I can't get a job as I don't have time to. I'm constantly "on call."

I've discussed AL with her BEFORE she got the dementia and she told me, okay basically shouted at me that "those places are people whose family doesn't love them." I mentioned it again to her yesterday. I asked her how she liked living here and she told me she "would rather hang herself" than live here (unfreaking believable after all the crap I do for her). She then shouted at me "I want to go home." I told her as gently as I could that she can't. I then asked her about AL. Of course, I had to couch it like "little apartments, not old people's homes at all, where all your church friends live." Her response: I'm not going there.

What on earth do I do? My mom is not happy here, wasn't happy living in her own home before here (constantly said she was lonely and when was I picking her up), can't go back to her own home and will hate AL even worse.

I think it in my best interest for her to go. Am I being selfish? Should I just put my life on hold until she dies? What do I do?

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I know exactly what you mean and how you feel. These people feel the total loss of control in their lives and usually lash out at the ones they still recognize. I had to have my mom removed from the house and that was the hardes thing I ever did and she was hating and trashing me like crazy too. I had an aunt who lived in a nursing home and to the end of her dying days she always told the staff that she really wasn't "one of these people here." This disease takes down more than the afflicted - it takes down anyone and everyone who caregives.
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I am in the same situation. I would love for my Mother to move to assisted living. I think she would get a lot out of the socialization and truthfully I do not want to be my Mothers only socialization - it makes me feel smothered. My problem is that since I have moved into her home she refuses to even discuss assisted living. I feel that she was using that as a manipulation to get one of her children to move into her house and now I feel stuck. My Mother seems to be thriving as I get more and more exhausted. I love her but feel that she actually can suck the life out of me especially when she makes snarky comments about the type of "care" that I provide for her. Now I am trying to figure out how to get the hell out of here and still make sure that my Mothers needs are being taken care of - forget the siblings - they help out one time a month.
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If you want to place her in AL then do so. If you can't do it, then don't. If you choose not to, find a compromise.

Try Adult Daycare. Keep the outside caregivers coming in to help (they should perform light housecleaning for your Mom's area as well as getting her ready to go to daycare, being there when she comes home from daycare, preparing her meals to her specifications, her grooming, her doctor appointments, companionship etc...). If they refuse to do their jobs, let them go and find better caregivers. Agency care providers sometimes are not equipped to handle their patients when family is present. They feel like they are overstepping boundaries. And don't let your Mom sabotage the situation with them. Be clear that the Plan of Care must be followed. You shouldn't shoulder all of this. Get help.

Even if your mom complains, its what she needs. You might also consider seeing about mental health counseling for mom. Someone she can talk to about her feelings. In my state, they also just starting providing mental health counseling for care-providers! We need it. The emotional burden on us isn't quantifiable. It shortens our lives. Please check with your state social workers to see what services are available your area.

Good luck and bless you! Taking care of parents is the hardest most unforgiving job in the universe. You are not alone!
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Karen, you've done your duty and then some. At this point in her life and her illness, she is better served by professionals. Your most important role right now is to be her advocate and loving attentive visitor, not caretaker. You do not owe her your life.
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If you don't already have guardianship, get it taken care of NOW. When my mother got to the point that she was a danger to herself and the public, we new she had to be some where safe. None of us could physically handle her as she was healthy enough to swing something at us and cause danger. Anyway, My sister and I found the perfect assisted living center for her needs. Sis took her to a funeral, lunch, and shopping...Our brother and I moved her belongings into the assisted living center, set up her apt. just as her bedroom was at home and mom was delivered to the living center. It took a huge amount of work just to get her in the door, but a kind - knowing - doctor convenced her to stay just for a few weeks to see how she likes it. Well, Mother has been at the assisted living center for about 2 1/2 years now and has never asked to go home. She now gets socialization, regular meals, and a church minister comes every Sunday to give a Christian service. She also gets her meds in a timely manner, which she never did for herself. We didn't get to see mother for 6 weeks, just to get her acclimated. Things were a little tense for the first few visits, but now we talk, go shopping, and eat out any time she wants. What I'm saying is that you must be firm and trust your best judgement that you are doing the best thing for your mother whether she admits it or not.
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I can relate to a lot of your experience. My stepfather died when Mom was 85. She was miserable living in the house alone, crying completely negative and not taking care of the house, not eating,etc. Yet she refused to move, and it took 5 years to almost force her into an independent living facility because we could not keep up her house for her. That was 6 years ago. She fought us, she complained, and is still complaining about everything. Actually, I think she is more content, has friends where she is, but she just loves to complain and dump guilt. Now she is 98, almost deaf, and frail with increasing dementia. She still gets around without a walker, dresses herself, puts on makeup and makes coffee. Other than that, she can't remember how to run the washer, cook, use the can opener, etc. She needs to be in assisted living, but again, she said she would kill herself if we move her. Her dementia is getting worse and worse. Your mom is much farther along than mine, but all I can say is, if I were you, I would put her house up for sale and start researching a place that has progressive care, assisted living to managed care. You love her, you have done your best, but if you can afford it, she needs to be where people who know how to care for her are available 24/7. No matter what you do, she is going to make it difficult for you. She can't help it, but you can help yourself.
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You could sell your moms house and make out a caregivers contract and pay yourself for her care consider it a fulltime job. (If you have the patience for it I mean) Or, use her money for her fulltime care in her own/or your home if she wants to be home. Sounds to me that she is in beginning stages of Dementia as my Mom was like that 5 years ago . The wanting to "go home" is comfort to them. If you take them home in later stages of dementia they still say they want to go home when they are home. Very sad situation. Do what your heart tells you to do but take a deep breath and put yourself in her situation and how she might feel also ok. Good luck...
Alzheimer's Poem to help...
Please don’t try and make me Remember…
Don’t try and make me Understand…
Just let me Rest and know you’re with Me…
Kiss my Cheek and Hold my Hand

I’m Confused beyond your concept…
I am Sad and Sick and Lost…
All I know is that I need You…
To be with me at all cost.

Don’t lose your patience with Me…
Please don’t Scold me, Curse, or Cry….
I can’t help the way I am Acting…
Although I will try.

Just Remember that I need You…
And the Best of me is Gone…
Please just stay beside me…
Until my Life is Done.
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tiredandpoor: You need to consult and elder law attorney. It is possible for the husband's assets to be transferred to the wife so that there is still money for the wife to live on while Medicaid is paying for the assisted living facility or nursing home. It is kind of complicated but can be done which is why you need the advice of a lawyer who specializes in elder law. I am in the process of doing this with my husband so I know there are ways to set things up so that you will be able to have enough money to live on.
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I agree 1000% with every one of these responses, as I have gone through this over the last 3 years. My 95 year old mother is now in a skilled nursing facility - a major accident in the home provided the opportunity to get her there directly from the hospital. My 93 year old father finally agreed to go to an assisted living facility, after living alone for over 2 years, and after I anonymously petitioned the state to revoke his drivers license.
I might also add that, once you have found an AL place, you ask for their suggestions as to how to get her there. I will warn you, though, that due to your mother's mental decline, it may be necessary to not be entirely truthful with her....you need to do whatever it takes to get her to a safe environment, where professionals can handle her.
I would also suggest that you print out all of these great responses and read them over and over again for support.
Good luck, and God bless you....you will survive this!
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When husband goes on Medicaid, what do the wife live on?
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Some "Memory Care" assisted living programs have short stay/respite care available - not many, but some. (I send my husband to one for long weekends on occasion in order to give myself a break. It's a nice place, although my husband would rather be at home, but I have made it clear to him that I need the rest in order to be able to continue to take care of him. Unfortunately I can't afford to send him there full-time because they only take Long Term Insurance or self pay.) Perhaps you could try to get your mother to go to one of those places for a few days now and then if that is available where you live so that she can see what it is like. If she makes friends there, she might change her mind - or not.
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I agree with Chicago1954. I got to the point where I couldn't take care of my husband, but he refused to go to assisted living. I waited 7 more months until he had to be hopspitalized. I told the hospital's social worker that he couldn't come home as my own health was suffering. She helped me to find a place for him. I also consulted an elder law attorney who got my husband on Medicaid so that I wouldn't be financially drained. It was one of the most difficult things I have done, but so necessary.
Taking care of yourself isn't wimping out. It is necessary for your own survival.
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You have given your mother the very best care possible. It sounds like her condition has gotten to the point where you are no longer able to provide the kind of care she needs on a 24 hour basis. Because of her Alzheimer's (and Stage 5 is nothing to shrug off) she needs more care than you are able to give. You cannot sacrifice her health and well being trying to do everything for her. Do you have POA and are you able to make this decision. She will most definitely protest and loudly, but I have found over the years, that after an adjustment period, having the daily stimulation and care and visits from you that she will ultimately be happier. I know it feels scary, but you have to do what is best for her and YOU! I don't know where you live, but you might contact an agency like A Place for Mom (866-333-6241), it's not cost to you, and see if they can help you find a good residential community that serves the Alzheimer's patient. Best of luck with this process.
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First of all, you have every "right" to say no to draining yourself to exhaustion. In stage 5 of Alzheimer's a person is not in an assisted living facility, they are in the Alzheimer's unit. They have walking bars on the walls to prevent falls in case someone forgets a walker (something you could check into), but it sounds like her behaviors are killing you. One thing I learned as a nurse was that other people (caregivers) can do a lot more with family members than you can with your mother. She won't be able to scream at them, and you can visit. You did not mention if you have POA to sell her home, and if you do, sell it. Use the money to pay for a nursing home. No one is going to think less of you for you taking care of YOU! She will die and you will know you did the best you could given this awful disease. It is not easy on any of us who have to go through this dying process with family members. Hang in there, it does get better.
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Exactly. You have to blame someone else. We told my mthr that she had to stay in AL until she was healed. Now she is well, and "wants to go home." Have told her we have to do some upgrades before docs will allow her to stay at home by herself. That she has to get new electrical wiring, new furnace, new ductwork, and that is going to cost an awful lot. Going to have to save up to pay for it. Etc. When she starts to think about the money, she no longer mentions going home.

When she asks how much AL costs, tell her it is part of the medical expenses (it IS tax deductible!) and you can fib and tell her you think that insurance covers it since it is medically necessary. Certainly cheaper than upgrading the house to make the docs happy.

PS. Most elders ask to go "home", which in their minds is a different time and place from now, but they do not realize that.
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It's not wimping out. Sometimes, if circumstances create an opportunity, you can put the job of delivering the plan to someone your mom is more likely to (or has to) listen to.
You've tried to reason with her about her situation and yours, even though you know she's not capable of reasoned thought. So, you've done your best there. The situation is not working out for her or you. You deserve a life, you've done enough. You know all of this.
What's needed now is for you to decide where is the best place for her to live and to arrange for her to live there. So much easier said than done. She will only be capable of participating in the decision making in small ways. You have to take the reins and the sooner you do, the sooner you can resume living yourself.
It is SO hard to become the parent to your parent, but that's what has to happen.
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I have read many time here of parents who protested loudly about moving to AL only to love it once they were there. I understand your frustration, I'm an only with both my parents (92 & 94) still living independently at home. We have brought in care as needed, recently Mom fell and broke an ankle. But they have expressly said they do not want to move and want care brought in. I will abide by that wish, but if my Dad should go first, AL may be the only possibility for Mom as she has macular degeneration and is profoundly hard of hearing and like yours refuses to wear a hearing aid. At some point, you may have to be the adult in the room and make that tough decision for your health as well as hers! Good Luck!
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Thanks for replying. I guess I could always wimp out and blame it on the doctor's right?!!
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The next time she falls, call an ambulance. That is what had to be done with my mother. Once she got to the hospital, they found several things wrong with her. (Congestive heart failure, HBO, broken ribs.) From the hospital she was moved to a rehab facility. She lived alone though, so you have to make it clear to the doctor that she cannot be cared for at home. Good luck.
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