My mother has vascular dementia and my father a brain injury. My parents live in independent living with cargegivers coming into their home between 4 and 8 hours per day. I live 4 hours away. My parents will not move from their community. My mother has alzheimers. My father suffered a traumatic brain injury 3 years ago. Both have dementia, just very different. My mother is pleasant and loves to socailize. She has high anxiety. She needs help with bathing, dressing, personal grooming, and can not perform household tasks. Her memory is bad. My father is paranoid, very private and protective, and thinks he is fine. He does not need assistance with personal care or with other activities. His memory, judgement, and basic mental ability is getting worse. The caregivers we have are for my mother. My father hates them and thinks all they do is prepare meals. He thinks they have been "training" my mother to bathe herself, dress herself, etc and should be done by now. He thinks she does not need their help. He not only does not comprehend his true situation, he also does not comprehend my mother's true condition. He has been told to run his errands while caregivers are there yet he feels he must keep an eye on them and then drags my mother out after the caregivers leave. he leaves her in the car while he shops, etc. he probably should not be driving but if I stop that he will not use the services available and will walk to the store with her (has done in the past) - she can not make that walk anymore. He is so paranoid that he thinks I am stealing from him, conspiring with doctors against him, and constantly tells my mother that. He tells her over and over how all their problems are my fault and that he wishes i would move further away. He goes to the bank daily to make sure I am not pilfering their money, and is still sure I am. All his pestering of my mother regarding his paranoid thoughts are exhausting her and upset her so much she starts crying. She is going downhill. However, she depends on him and being away from him is very hard on her and has resulted in her dementia worsening in the past ( during his rehab, and during her own following hospital stay). I am currently planning on putting my mother in assisted living because she needs more care and supervision and to get away from his constant complaining. There is no way I am getting more caregivers hours in their home. I know he will not agree and he will push me completely out as being the cause of all their problems. I feel like I am just rambling and jumping around and not explaining very well, but I am so very distraught over what I feel I have to do, and what I think may result from it. So - I think I need to separate them due to my father's mental state and unability to comprehend and address my mother's dementia. I know my mother will not handle separation well and fear her dementia will progress rapidly due to it. I will probably hurt them both trying to help them, but leaving them as is is not working either. What do I do????
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Someone told me this years ago 'you are selfish if you don't take of yourself' - think where they could be if you were injured or sick so take care of yourself too - I know it can be hard but you'll see the results if you are hale & hearty to deal with their issues - good luck
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I belive whatever decline was observed when dad was hospitalized was simply a more accurate assessment of what mom could "actually" do, as opposed to what dad " said" she could do.
Always good advice.
Jacqueline, you can trust the voice of reason coming from Babalou.
The other thing that has worked some for me is to write my father a letter that was very loving and factual. He is an intelligent man but because of the dementia and paranoia which was there even before, he can't remember my mother has Alzheimer's and that he has a dementia disease. I explained the history to him and talked mostly about the best way to help mom. I attached a half page list for both of their illnesses of the diseases and symptoms for the stages they are in as well as mentioned the doctor's diagnosis. This has really helped because of his logical brain. He realized the truth and understood more the situation. I don't know if this would help you at all but it is one of the things that has helped me.
I watched this play out for 10 years; again and again, EMS would show up and offer to take uncle in for a psych eval; I have very polite relatives who always said "no, thank you; we're managing". their dad survived her by three years, in memory care and then a VA facility. Once on the proper meds, he was somewhat manageable for the staff.
Look, I'm just passing on second hand experience. Folks who've done this themselves will have better advice.
You and I and many others are in the same impossible place: elders are not quite legally incompetent, can't force them to do what's best, but for all practical purposes they are an inch away from disaster.
As tough as this sounds, bad stuff is going to happen and probably happen soon. My mom struggles around the house, has probably fallen since I left today, but she refuses any help much less assited living. She will end up in ER, then to rehab and then to skilled nursing care. Dad will then go to memory care, hopefully in the same facilty. And this is the way it will go for your folks.
After years of trying to perform miracles, worry and aggravation I accept this reality now. We do as much as we can, as much as elders will allow, and that's all we can do. I might have to drive back down next week or next year. Who knows....
Do you have her Healthcare POA and Durable POA? I'd get the input from professionals, such as her doctor and other professionals who do assessments and move her to where she needs to be. Your concern about her separation might be valid, but, her welfare must be taken care of. I'd keep in mind that with dementia, sometimes, it's not possible for the patient to be happy and content, regardless of where they live. If she's anxious or depressed, discuss medication with her doctor.
If you don't have the proper paperwork to act on her behalf or you fear your dad will forbid it, I'd get legal advice from an attorney, so you know your options. I wouldn't hesitate to go that route if necessary.
You are doing good so far! Yes, you should have asked your question. Bouncing this off so many others will help you, even if you don't agree, or even if the answers are not right for your specific family.
If you've read on here before, you will find that it is not uncommon for siblings to behave exactly as you have said about yours. You are not alone if you keep talking to the many caregivers on the forum who have been where you are, with varied outcomes. Your caregiver plans seem great! Let us know if that helps.
Now, do you know any ways to calm Dad down? Paranoia may subside, then get worse, then better. Does he have good days, then real bad? Notice if he is fed, does that improve his thinking? Does he take medication, or vitamins?
Focusing on your Mom's environment, improving Dad's outlook may ultimately help Mom. If you have to get Mom to a safe place, you will know when that time is right, and you don't ever need to feel bad about doing the right thing.
Still waiting for the experts (someone on here who has done this) to show up. They will come. You know to take care of yourself?
My mother is paying for her caregivers (through me as poa) and soon her long term insurance will cover some of it. My dad would never agree to the cost of this 'unnecessary' service but it is working right now. He does not see the bills and I refuse to show him. With that, yes they can afford in home care. My dad would never accept caregivers for himself and would not qualify for his long term insurance benefits - the cooking / cleaning my mother's caregivers do is enough for him. Unfortunately they live in a pretty isolated community and good caregivers are hard to find.
As for my siblings - two have 'checked out' and do not want to be bothered, one lives too far away, and one is involved but too afraid to upset my dad. Two of them are an hour away from parents so closer than me.
Now that it is a new day and I have had some sleep - I will slow down with this. The best solution would be to have GOOD caregivers there all day. So - much to my dad's dismay, I am going to try to increase the caregiver hours, but only with the caregivers I know are good. Some of them deal well with my dad, others cower. Right now I have too many different ones - need to only have a few. I have been unable to get the good ones for every day in the past but I will be more insistent. They live in a small community so the pool of caregivers is small. This will be presented as a doctor requirement. Take the increased hours or Mom will be going to a facility.
Thank You for the help.
She is now used to her environment and knows it is home - she still does not recognize many family members and needs caregivers for daily living. She is enjoyable to be around when she is in a good mood. My father can be very gentle and loving with her, but is not equipped to be a caregiver. He just goes off sometimes with his paranoia and denial of their situation.
There is no good answer to my question so I apologize for even asking it. There is a logical answer - separate them. If I did not love my parents and want the best for them that is what I would do. Somehow I have to find a way to balance the logic with the compassionate. I also have to put up with my 4 siblings who know something must be done but won't do anything - if my decision turns out to have bad results they will blame me as well. There is no good answer here except do my best and remain strong.
You may need help evaluating the situation with your parents.
Ask someone, 'What is the real difference between 'independent living with caregivers', and "Assisted Living"?? Would the difference be financial?
You say: "There is no way I am getting more caregiver hours in their home".
Can they afford this? Who is paying, you?
Can the caregivers presently take Mom out of the home for a few hours a week?
How does Dad do when left alone? Can they be taken separately on outings?
Can the attend Senior Center events, or go there for lunches? His behavior socially will become apparent in public-a way for a further assessment-with caregivers in attendance. Or, can they be safely dropped off at the senior center?
Again, just pondering here, about slowing way down. Especially when you are considering separating a couple who obviously are bonded (even if negatively);
are co-dependent upon each other (appears dysfunctional); and other dynamics that may have no cure or resolution.
If you are 4 hours away, how and in what ways are you getting your information?
Not to question the accuracy of your own assessment by any means-you are probably very correct. Do others see it too?
If Mom were away, in Assisted Living, it sounds like Dad would also require caregivers due to the TBI. Are you able to plan for that? Do you have POA for either, or both parents?
You have a very difficult situation there, it must be very hard. Discussing the plans and ideas here will help you. I agree with Babalou, you have some very difficult decisions to make. And your Mom's illness would require a peaceful environment! On top of that, Dad's illness sounds unstable-he too is not to blame.
Are there siblings to consult or to help you?
And finally, don't believe for one New York minute, that you are to blame.
With enough information, you can figure this out, what is best for both parents.
Hope you can do this without losing yourself in the process. Don't feel bad that you will need a lot of help. Help is on the way....
Is your dad followed by a geriatric psychiatrist, who might be able to medicate the paranoia? If not, I would get him evaluated for psychiatric meds, either by taking him to a geriatric psychiatrist, or by requesting that he be "Baker Acted"--a 72 hour involuntary psychiatric inpatient evaluation. Talk to his PCP about how to best get him evaluated for meds. There are now Senior Behavioral inpatient facilities that specialize in this sort of evaluation.
One thing you need to remember. This is NOT YOUR FAULT, even though your dad says it is. Your mother has a fatal disease called dementia. She needs and deserves 24/7 care and a restful environment, not the ravings and "ministrations" of your unhinged father. What she "wants" right now? Are you really thinking that the dementia patient should be driving the bus? If her dementia progresses when separated from Dad, it's because her dementia is progressing. Not because of any of the many difficult choices you are going to have to make.