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?
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 ..
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!
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.
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.
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.
Remember the marriage vows, "..for better or for worse." Sadly your wife's condition has changed for the worst.
He is trying to do the best he can for this worse case scenario.
Those vows DO NOT mean to kill yourself trying to accomplish the impossible and leave your spouse without an advocate.
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.
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.
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.
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!
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.
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.