Can parents with dementia decide on care plans, and allow for my input/assistance if POA's plans are not what they want? - AgingCare.com

Can parents with dementia decide on care plans, and allow for my input/assistance if POA's plans are not what they want?

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My oldest brother is POA. My parents became confused/dependent last year, and we agreed I would handle care and he would handle finances. I was most involved already, lived very close by and had flexibility to help. I hired in-home aides and monitored their care closely. The aides complained that I was too controlling, so my brother took over, excluded me from any involvement in their care, made it very difficult for me to visit, and has not spoken to me in 9 months. He became overwhelmed after a few months and moved them to assisted living, promising to return them home if it didn't work out. My parents became inactive, lethargic, lonely and depressed; their health declined rapidly and they have been hospitalized many times for dehydration, pneumonia, UTI's immobility due to back pain, etc. They are so weak, immobile, and confused after three months in assisted living, that they are now being moved to nursing home. I want to build in-law suite (with my own money) and have them live with me with aide assistance. As another option...a prior caregiver (who visits them) offered to live in their home to provide 24-hour care at $40-50K, plus free rent. (Specific details to be established.) My brother will not discuss any options besides nursing home. He believes nursing home provides best quality care and will lessen his stress. I believe they will decline quickly, and would get better care with individual attention from very experienced, wonderful aide who loves them. My parents want to go home and I want to help care for them as much as I can before they pass. They have Alzheimer's, so I wonder if they can make this decision, allow me to influence and assist with their care, or put me in charge of their care. I do not want or need their money; I want them to enjoy what is left of their lives in a personalized home setting surrounded by people who love them, and think they would do better with more personalized attention.

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The constitution does not put age limits on personal freedom. If a person commits acts of endangerment on others they need to be charged and taken to a criminal court of law, before eliminating or restricting their personal constutoinal rights. A persons constitutional rights should not be jeporadizes in civil court. Many relatives have selfish gain motive to try and get someone legally restricted.
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I think the first move is a petition,
the second is a motion,
people can help you with that.
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If they are not happy that could be a reason for their decline, to be in a place that they do not want to be in. The elderly fall, into a category the same as any person with a disability and people with disabilities have rights.
They have rights "to not be warehoused" in a nursing home if they do not want to be, which is what it comes down to, for seniors with disabilities, who do not want to live this way.

Seeing that your brother has an attitude and sounds narcissistic, you would have to go to court with your parents and let them speak with a judge,

ALZHEIMER'S IS A DISEASE, IT IS NOT THE PEOPLE OR THE PERSON
PEOPLE WITH DISABILITIES HAVE RIGHTS!

That being said, Your brother will continue to not support you, but if you go into court with a plan the court will listen to you, you need to file a motion.

Our eighty seven year old went in to a high-end nursing home, went down to 98 lbs. in 13 weeks, now with home monitoring what she eats and really observing and not relying on an institution whose care may help or not, just keep the checks coming please, is not for everybody including our most vulnerable people.

POAs can be removed their function is not set in stone especially if you have one of their friends in court with you, they can be removed or be forced to resign.
I saw those little houses they contain a small kitchen, LR, bathroom and they go right up in your back yard, they are so functional. Good Luck!

PS. She is home now in May will be two years, she still has the disease and progressing but I am sure coming slower than it would have, but two years better than she would have been there.
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I don't think a person who has dementia can properly know what care they need. You said they became confused. That is the reality. Even having mild dementia, a person makes poor decisions and cannot forsee the outcome of their decisions.
After hiring home health aides for my mother in law, I have no problem being her advocate. Especially when I see something they are doing that is not in her best interest. I have made a care plan for her which includes preparing for the future as well, not just the present. I think there are many people in assisted living facilities who can not care for themselves properly. The assisted living facilities thrive on income form these residents. Some only leave their residence to go for meals and that is the limit of their interaction with people and they do deteriorate. Trying to turn your home into a nursing home is what my mother in laws home has turned into. She always wanted to stay in her home. Now she does not know she is in her own home 99% of the time. Your brother tried the assisted living, it is obvious they are no longer at that stage of care. He has a huge financial job managing all this.... your parents may thrive better with a nursing home equipped for their needs and they will have the interaction not provided in a home setting.
Though caring people try and find the best long term facility for their loved ones, in these times it is not uncommon for these LTC facilities to be bought out. Often quality of care can change. Can the aides who your parents feel comfortable with provide a little extra care while they are residents in the nursing home? It is obvious you care very much.....the reality of turning your home into a nursing home is hard on all......
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What does their physician say about the care they need? Community living is first, whether if be in their own home or someone else's home. There are programs that can assist with in home care if they qualify medically and financially. If they have the financial resources, they can afford to pay for in home care. Building an addition onto your own home is a great idea, you can still access in home caregivers. Visit your library for activities for those with dementia so you can keep them as active for as long as possible. Contact your local Area Agency on Aging or senior center for more info, they are a great resource. Nursing homes have changed over the years, they must be licensed, they receive an 'inspection' or survey by the state and there should be a long term care ombudsman that is an advocate of the residents who reside in facilities. You want to look for a facility that has high ratings, go to medicare.gov/nursinghomecompare for info on facilities. There will be a care plan meeting which will discuss what care your parents will receive, it's a good time for families to make their expectations known. Make sure the facility has a good activities program. It's not easy when our parents become older and have dementia, the only thing that matters is; what is best for your parents-what do they need and where would they be happier. If that is at home, make sure you have help coming in. Good luck.
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Again it will depend on the degree of dementia but to ascertain if it would be better to live at home. One would have to remember it is a 24 hour, 7 days a week 52 weeks in a year. Ask yourself, would you be able to contact a physician immediately or to obtain medications when needed. In dementia or alzheimers eventually they will not recognize you or care where they are at. An nursing home would be a likely choice, but one would need to investigate that nursing home for not all nursing homes are adequate. Before deciding, are you able to get the best care??
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I am a home healthcare nurse and I cared for my dad in my home for 5 years until I was unable to do it anymore after he fell and went into a nursing home.

Caring for one person with Alzheimer's is very, very difficult much less caring for 2. I can't even imagine how that could even be done. I applaud your desire to want to keep your parents with you and provide for their care yourself but if you've read through enough posts on this site you'll know how close to impossible it can become nevermind mind-numbing stress.

Renovating your home is a lovely idea and demonstrates your commitment to your parents. I'm sure you'd make sure it was very nice for them but whatever you install in the ways of aides for disability (grab bars, etc) will have to be removed if you ever decide to sell your house. I've worked with many patients who had numerous built-in aides (stair lifts, grab bars, etc) and they have all thought that their house, when on the market after they've passed away, would be a wonderful find for someone who is disabled. That's denial. In reality a real estate agent would make you remove all of those aides. So you not only have the considerable cost of building such an apartment but you'll have the cost of having to renovate it if you ever move. How long would the renovation take before it's move-in ready? How much of a decline in your parents health will you see before the renovation is done?

A caregiver you know offered to live-in for $40-$50k a year. Do you know what caregivers make? Generally they make between $10-$12/hour. The price varies for live-in but a $40-$50k price tag is outrageous. If this caregiver is offering to care for your parents for $40-$50k a year you're getting fleeced. Do you have another caregiver to work when this one is off for a day or two? When she gets sick? If, for some reason, it doesn't work out? Another story: One of my patient's neighbors offered to be his caregiver and did a good job until she realized she had bitten off more than she could chew. And my patient was mobile and didn't have dementia. He was a very nice man. My point is that it's really easy to offer assistance, maybe not so simple once one finds themselves in the midst of things.

Everything may look great on paper, all the plans may sound very reasonable but it may not take long for everything to get out of control especially when dealing with Alzheimer's and it may happen in a blink of an eye. I understand that this is your family and my patients are just my patients but as a home healthcare nurse I would never consent to work with someone with Alzheimer's on a full-time basis much less 2 people with Alzheimer's at the same time. I'm not sure my agency would even take on a couple with Alzheimer's. I've never heard of that being done. I've had patients who were married and they didn't have dementia and I worked with them both and that was difficult enough.

You wrote that your folks were weak, immobile, and confused. They're not going to get better. I'm glad they perk up around friends and family, the energy that comes with visiting is always good for someone but they won't get better, only worse.

We all probably sound very negative and ignorant and again, I want to tell you how wonderful I think it is that you want to commit your life to your parents but if you were my friend who was telling me all of this, explaining to me what you wrote about, I'd tell you, as a friend, that I hope you find another alternative because you have no idea what you'd be getting yourself into. You have the desire and the commitment and the devotion and the love and the respect....you have all of that good stuff and your parents are very fortunate to have you looking out for them but that desire and commitment and devotion and love isn't enough. Most of us feel like that towards our parents. I know I felt all of those things for my dad. But it's not enough.

(And if you find yourself in need of a caregiver I hope you look into someone whose rates don't indicate they're taking advantage of the situation. Just because they come with a high price tag doesn't make them suitable. The rates you quoted seem like highway robbery. I wish I made that much.)

I'm glad your shared your situation with everyone and I hope you don't think we're all a bunch of pessimists. We're not, we're just experienced. This website offers so much information, articles, referrals....I hope you do a lot of research before making any decisions. I think you're a good daughter.
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I agree with Country Mouse. It sounds hard but I too agree with your brother. We all want to think we as their family can provide the best care possible but if you can take a hard look at it objectively (very hard to do - leaving emotions out of the decisions). As far as assisted living and Nursing homes being awful I can honestly say that hasn't been my experience at all! My FIL has dementia when diagnosed he had over dosed on his meds because he forgot he took them that day and took 7x's what he should have. Once out of the hospital he went to a nursing home with a rehab section. I hated this NH it truly was awful but I also knew as much as I wanted to take him home, as much as he kept asking to come home (and still does) it was never going to happen. The OD just did too much damage that there was no way I could provide the proper care he needed at home and the search was on for a better facility. 3 months after being there we found an assisted living community with a memory care unit (for those with alz and dementia). It was wonderful!!!! And once there we knew it was the best decision we could have made. The staff was like family. He had his own studio room. The food was outstanding, The care couldn't be better. He was doing well there but the dementia was still progressing. This Past Sept after a hospital stay his health declined so much that the assisted living really wasn't the place to be any more he really needed to go to a long term care nursing home. The assisted living had called VNA to have a 24/7 nursing program in place for him but it really wasn't enough. So the look was on for a good long term care. After about a week of looking we truly lucked out when we found a wonderful place just 20 min from home. We had just call at a time where a bed for a male was opening up in 2 weeks. Went to look at it and it was amazing!! We took the bed. Again he had a studio type room (big enough for bed and sitting area and his own bathroom) a week ago Friday he was doing ok then on Saturday it was like the floor fell out from under him and he is now on hospice care and has been given a month or so to live. He is also 90 yo with a lot wrong with him. Now we are at a place where its just a matter of time and which organ is going to fail first.

They too are a wonderful staff and he is in a wonderful facility. I have seen thorough all that looking some real crap holes that I couldn't imagine putting a dog in never mind a parent and this isn't one of them. You have to really look at them to see if its the best fit for your parents. And even after 5 months there many of the staff from the assisted living still come to visit him.

Just keep in mind that an assisted living situation isn't what causes the elderly to decline in health it is the Alz and dementia that yes can go that quickly.

With that said I also have his wife living with us my MIL. She had a stroke a year ago and was diagnosed too with dementia, Psychosis, depression and high anxiety which according to the DR she had long before the stroke. So now she lives with us. To talk to her you would think she is ok to make decisions as she seems competent but she has been declared incompetent to make both medical and financial decision because of the mental illness she has but anyone talking to her would think she is able to make those decisions.
If the time comes that the care is beyond what I can provide I'm not doing visiting nurses etc. when I know a long term care facility can provide better care than I could ever do at home and it will allow me to live my life with my family too. I can't stop everything for my children and husband just because a parent is ill.

None of these decisions are in any way easy and everyone I make as the POA for both of them tears me up inside. I'm always questioning "did I make the right decision". These decisions are just so emotional and so hard to put that emotion aside and make the decisions we really know are truly for the best. My husband is an only child and he wasn't chosen as the POA because when his parents were younger they knew he wouldn't be able to make those hard decisions. I am fortunate that he doesn't have siblings who may question every choice and not agree with choices made.

Taking on a sick elderly parent is very difficult especially in the condition you say your parents are in. You really need to look at how this will change your life your families life etc. if you got to court to pursue this. Really give this a hard and long unemotional if possible think as to what really is best. Remember that being with you isn't the same as them being "home". Good luck and try to see things from your brothers point of view too. Try to keep good communications going with him and try to listen to what he is saying and his reasons for making the choices he is making. Don't get stuck in the thought that you can do it better.
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I don't agree with any of the advice you have received. Being at home with you or in their home with a caregiver is the best way to go until it doesn't work. Both my parent's have Alz and I have seen what Assisted living and nursing homes are. They Re only out to make a profit. They do as little as they can even the most expensive ones. There was a great documentary by PBS on one of the biggest Assisted living called Emeritus. You should try to find it and get a copy and have your brother watch it. You would never put your parent's in one after that.
With my Mom, the Assisted living worked because she was very active, played poker, loved the entertainment, went on outings to the movies, etc. but also I was there every day making sure they were taking care of her. I found so many things they didn't do and did wrong, like giver her wrong meds and food that interacted with her meds. When I complained to licensing and they were fined they decided they did not want me there and banded me from visiting my Mom. At that point I moved her. Just be there if they stay in a nursing home but e more you move them the harder it is. I really don't understand such a decline if the Assisted living was doing their job. They usually have an activity director that tries to keep them busy. Good luck and do what is in your heart.
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Vicki, this is going to sound hard but you need to look ahead. If your parents both have Alzheimer's Disease, then even if you think you could handle their living with you now, what happens when one or both of them reaches the advanced stages? I'm really sorry that the earlier arrangements couldn't be made to work, but in practical terms it does honestly sound as if your brother is right: the best option is to get your parents into a permanent place where they've got the best chance of being well taken care of together until the end of their days.

It might look to you as if your brother is automatically rejecting every suggestion that's made; it won't be as simple as that. Suppose you were doing your best to make clear, definite, practical plans, and others kept chipping in second guesses and nice ideas - you'd run out of patience pretty quickly. He's the one who has taken on the legal responsibilities. I expect what he'd like is a bit of support and appreciation.

Your parents' constant desire to go home must be very upsetting: homesickness is heart-rending, very hard for you to hear. But as others will be quick to point out, it's a homesickness with no cure. The "home" your parents are yearning after is a different time, not a place. No one can take them there.

If you possibly can, mend fences with your brother and find a new role visiting your parents and supporting their care: as their daughter, not their nurse. The quality of life experienced by people in nursing homes can be hugely enhanced by family input, but don't try to take over. It's hard, I know, but if you make a conscious decision to give up control you'll be free to focus on giving comfort and love instead.
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