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Coder1 Asked January 2023

Any advice on how to deal with the need for day care and/or residential care with a person who has anosognosia?

Wife recently diagnosed with Moderate AD and anosognosia. First diagnosed with MCI more than 10 years ago and removed from failed MAB study several years ago due to lack of cooperation because of her perception problem. She will certainly not get the level of care I can provide her at our home, but my mental and physical stamina are now running on empty! Her neurologist tells me my situation in rough but has no advice on what to do next?

Nanulinda1 Jan 2023
1. CareTakers meetings.
2. Therapy
3. antidepressants
It took me 3 years to find the help that is available to people like us .. It has saved my sanity . Check the Alzheimer’s Association and your local Counsel on Aging to start with .. You are not alone and there is help out there . You just have to find it . Prayers are with you ..

Llamalover47 Jan 2023
Coder1: Perhaps you can start with a social worker at your locality's COA (Council on Aging) as that individual should offer you some answers to your questions.

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Sara1959 Jan 2023
My wonderful husband had that. I thought it a blessing. He just went about his business, not stressed or upset about his continuing downward progression. We have a great adult day care center that he went to several times a week. They kept everyone there active and engaged. It also gave me much needed respite time. About once or twice a year I got respite at a facility for a week or two so I could visit my children, etc. Contact your local area agency on Aging. I believe every county in the USA has one. The services they provide vary. Our local museum also had a program with art that we participated in as a couple until COVID shut everything down.
Eventually he failed to be able to stand and walk. It was sudden. So he couldn'tmake it to the car to get to the day center. As an aside I did hire a driver to take him to the center as it is about 20 miles south of me in another town. The Agency on Aging gave me names of people they had vetted, background check and what things they had training in, etc.. Anyway, the kind people at the adult day center gave me the name of a local not for profit hospice that same day. He was accepted and spent the next two months at home in his hospital bed (I had ordered that from Amazon to keep him safe at night some months earlier). Hospice sent nurses, nurse aids , social worker , chaplain, (all supervised by an doctor) so I had help several days each week. Medicare covered all of hospice, every last dime.
He died peacefully at home. It was the best outcome I could have hoped for. I still miss him terribly,
But when I called the doctor's office when suddenly he was unable to walk they suggested 911. That would have been so disorienting and frightening to him since he really didn't know what was going on.

Find help. Your local Area Agency on Aging is priceless. I wish you all the best!

jaboatman619 Jan 2023
Some places/nursing homes offer day care but not sure for someone with dementia. Hiring a person to come to your house and help is also an option either private pay or through an agency.

AlvaDeer Jan 2023
Doctor Laura has this thing where she makes people jump up and down 10 times before responding and when they respond they have to respond by saying "I love you". (If they DO love the person, in fact).
I thought of that when I read your wondering how to respond because you just pulled the card for one of the level most difficult things in the entire world of dementia to deal with. I have a male friend, dear friend of my partner since their youth, now dealing with what seems to be coming down to a diagnosis in his wife of early Alzheimer's and I would swear involving anosognosia. You can imagine, if the neuro doc doesn't have an answer, how unlikely it is for us, but I hope someone dealing with this day to day has some hint. Other than telling her, reassuring her of your love, I have no answer.
I will leave you with this. Your wife isn't the woman you married and loved and you already know that. While she may have better and worse days, she is on a downward trajectory, and you are still well. You must give yourself a life the time remaining to you. You must seek out joy. You must live the remaining time with good heart, getting what you can of life. That means that while you won't abandon this woman with whom you share so very much in history, you must move on in some senses. Consider getting help if you feel you need it. Licensed Social Workers in private practice are sometimes great at counseling in a few sessions to help, as they aren't going into Freudian therapy about your Mothers and what you thought of her. They are there to help you deal with the day to day you are in.
My heart goes out to you and I wish you the very very best. I hope you will update us if you find something better than jumping up and down 10 times. If I tried that at my 80 years I would likely tip over.

ConnieCaretaker Jan 2023
You could both benefit from meeting with a Geriatric Psychiatrist who can educate and medicate. Perhaps CCRC living would benefit both of you:

https://www.seniorliving.org/continuing-care-retirement-communities/

janicemeyer18 Jan 2023
Ask for the PCP to refer you to a " case manager" ( this is usually a nurse or a licensed social worker) who can help you with options for her care. You can also call a local hospice of your choice and speak with the clinical director ( a nurse) explain your wife's illness/symptoms and ask for education from the hospice group as to when your wife may be " hospice appropriate" . Hospice will be glad to speak with you, educate you and perhaps have other alternatives for you to explore. If your wife could be admitted to hospice care , this will provide a range of care help in your home and also support for you and referral services.
Also call your local Agency on Aging and seek information about community services. You may need to at some point also explore " placement in a facility" for your wife, so be sure that all PCG. POA paperwork etc is in place. Look into the financial aspect of keeping her at home vs placement.

Get help to support your self care. Do not feel guilty about decisions you may need to make.

Taarna Jan 2023
Tell her that YOU need help in caring for her and your home. Then, get her into whatever program or facility that will accept her. Expect her to be rebellious for a time and maybe in need of mild anti-anxiety medications until she accepts her new "home" or "program". An adult day program (Monday - Friday days) might be easier for her to accept with some home health care aides or volunteers (family, friends, neighbors, members of your faith group...) coming in on the weekends.

Grandma1954 Jan 2023
While Day Care is great it sounds like you need more than Day Care.
If you want to try Day Care if there is something she likes to do or did in the past you can ask the director at the Day Care if she would "play along" and tell your wife that they NEED her help with -------------- whatever it happens to be. If she was good in art she can "help teach" others. If she was good at office work she can "file papers"
If you are looking to place her in MC then you will just have to accept the fact that she is going to have a problem with it since she does not realize SHE is the one with the problem. (Maybe they can get her to help with other residents)
But while placing your wife in MC is a difficult decision you are doing it because she will get the care she needs and she will be safe. It is not a failure on your part to provide care it is acknowledging that her care is beyond what you can do at home.
You make some decisions with your HEART and you make some decisions with your HEAD. This is one of them.

Patathome01 Jan 2023
I'm sorry to hear about your wife's condition that is beyond your level of care.

Remember the marriage vows, "..for better or for worse." Sadly your wife's condition has changed for the worst.
Isthisrealyreal Jan 2023
Nothing like a little guilt to help a situation.

He is trying to do the best he can for this worse case scenario.

Sheesh!

Those vows DO NOT mean to kill yourself trying to accomplish the impossible and leave your spouse without an advocate.
graygrammie Jan 2023
What is a MAB study? Googling hasn't helped me with this one.
Isthisrealyreal Jan 2023
Gray, monoclonal antibodies
Isthisrealyreal Jan 2023
Why was she in a MAB study?

I can't even imagine she would have been able to legally consent if she was diagnosed with MCI ten years ago.

Sorry, not an answer but, I am curious.

Is she willing to go to activities with others? Sometimes we have to shade the truth to accomplish our objective with loved ones suffering brain damage. Maybe finding a senior center that needs help with??? They are prepared to help her and if not, it's the wrong place.

Good luck finding a way to get breaks.

Beekee Jan 2023
I know this sounds harsh, but if she refuses any new living arrangements that would make your life easier, there is one choice left: You leave. Rent an apartment, or assisted living, or stay with a friend or relative for a while. To be ethical and safe, you would pay to have minders come by every day to check on her. You don't say if she has children or siblings, but oh how very surprised they will be to find that her 24-hour caregiver has jumped ship! Then they will have to take some steps themselves! If that's the only way you can get the attention of anyone else in the family, it's worth try. If you have a few days or weeks to yourself, you can start contacting helping agencies, learning about options, and making plans.

Beatty Jan 2023
People can say I refuse. I refuse to make some chores easier by having someone clean the house, deliver groceries. Refuse to have an aide/sitter so my spouse can go out alone. Refuse to have an aide help with personal care.

The have the right to refuse. The Right to Rot my Doctor called it.

However, they do NOT have the right to insight their spouse do everything. Do all the chores without help, be their constant company, provide all their care with no help or relief.

Anosognosia was a revelation when I was told about it.

It must feel awful to arrange things without your wife's consent, but without true understanding, their cannot be true consent.

Arrange the help YOU need to make your lives work.

Anabanana Jan 2023
My mother’s anosognosia made her very combative, which was a huge part of why I could no longer provide her care. (while raising my own kids) If she’s abusive (you make no mention of this) because she believes you to be part of the scheme to gaslight her, you may find that placing her in care greatly improves your relationship. I am now perceived as a possible ally, and not a co-conspirator. She often even believes she’s traveling, staying in a hotel, and I am able to catch my breath and live my life. And walk away when she accuses me of trying to make her think she could be wrong about something. Because she’s never been incorrect about anything and is not about to start now.

For context, my mother (97) is bedridden, incontinent, has to be fed, often thinks she’s 20, doesn’t recognize me, and believes she regularly enjoys the company of her siblings and parents.

About 2 months ago she shocked us with her request to see brain specialists because she’s suspicious that she might possibly be experiencing the slightest bit of decline and wants to nip it in the bud. Angry that the staff at the home hasn’t already picked up on this and arranged testing and consultations. Surely they should be more concerned!

Do what you have to in order to keep her safe. Nobody can do it all, or alone. And be certain to place just as much importance on yourself.

againx100 Jan 2023
Sorry for your wife's condition. She is lucky to have had you caring for her as she has progressed from MCI to dementia. 10 years is a long time! My mom lived with us for 7 years. Her road from MCI to mild dementia was much shorter than yours, maybe 4 years. She hasn't been diagnosed with anosognosia but probably could be. I don't bother saying "dementia" to her very often. She doesn't think she has it. But it really doesn't matter if they know and agree with the diagnosis or not. The facts are the facts and we have to act accordingly.

Of course you are running on empty! Who wouldn't be?? Glad that you see it's time for some help.

Your profile says your wife is 82. How old are you? How would you feel about living in assisted living with her? Where my mom is there are some couples. There are a variety of living arrangements - including 1 and 2 BR apartments. If you think you'd like that well enough, I think this would be your best bet.

Or you can get some aides to come into your home. Get a cleaning lady too. Before assisted living, I had caregivers 5 days a week for my mom. I find mornings to be the busiest with pills and breakfast and shower, etc. so I had them from 9-2, then 9-5 as things got harder. We were lucky and had some amazing women helping her. This worked for close to a year but with people calling in sick to the agency or to me for the private aides, it was a little too unreliable for our needs.

I think having your wife go out for day care is certainly an option but perhaps the hardest. For her to adjust alone to a totally new surrounding with new people, etc. could be a challenge. Of course, the staff is used to dealing with this so they will have tricks for how to engage with her and get her comfortable ASAP.

Don't get too bogged down in the decision making process. Pick an option and get going with it.

Best of luck!

JoAnn29 Jan 2023
I think a lot of people with Dementia do not want to admit they have it. That's why its so hard to get them placed. An Assisted Living is not for your wife unless your willing to move there too. My SILs parents did this. He had ALZ, she didn't. She could leave him knowing he was being looked after. You could come and go as you wanted. Have meals cooked for you, laundry done and your living space kept clean. Enjoy the activities, outtings and entertainment.

The other choice is Memory care but don't think u could be with her there or would want to be. Then LTC which unless you are 24/7 care you really can't go with her.

I would talk to an Administrator at each one of the above I mentioned and see what they think. Also, see an elder lawyer about splitting your assets. Her split going to her care and then Medicaid can be applied for when the money runs out. Once she is on Medicaid, you get to remain in the home, have a car and enough or all of the monthly income to live on.

AlvaDeer Jan 2023
When you do placement for daycare they will do an assessment, and will question you re these diagnoses. Then they will deal with issues, sometimes with your help.
The truth of the matter is that this may be a step in your recognition that you are losing your wife while she is still living, so sadly. And there is nothing you can do in terms of sacrificing your own health, for what will happen when you are gone due to a stroke or heart attack from overwhelming yourself with her care? You may need eventually to choose placement. We are none of us super-human.
I sure do wish you good luck. You have been dealing with this a long long long time, and you know that no matter how you try to pre-think things, you will always be surprised, either happily or NOT happily with things as they occur on a daily basis.
My heart goes out to you. Guard against letting the GRIEF of this situation tip into any of the OTHER g-word (guilt), because you are a human with limitations, and have been doing a phenomenal job. I hope you will update us on how it goes for you.

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