I am an 80 year old caregiver for my 81 year old wife who has Lewy's Body dementia. Everything and everyone seems to be against us. I am sick and tired of hearing, "Take care of yourself" and "I'll pray for you". No one will call her let alone visit her. In six months no one, not even the Pastor has called or come to visit. The Pastor says he is too busy. Home care services say they can not get help. Other local agencies say they can't get any money to provide services At our daughters request we sold our home and moved to a 55+ association to be near her. Not only is she too busy to help but the town home owners association has been terrible. We are outcasts because we are physically disabled. They object to the ramp I installed for her wheelchair. I am not permitted to put a railing at the front steps. They objected when I displayed a blue light in honor of police week. The objected to a yellow bug light I installed. They objected to a small dent in our garage door and we cannot use our patio because there is an unsafe drop off around it and I have fallen twice Now someone has filed an anonymous complaint witj Adult Protective Services saying I abuse my wife. APS is harassing me and the caregiver I hired to help my wife. They have taken her out of the adult day care that my wife goes to and threatened me repeatedly. And I cannot use a memory care for respite time. My wife has a tendency to fall, The State will not allow railing on her bed to prevent falls. They will not allow the bed to be placed against a wall nor will they allow bed alarms. It is illegal to use a strap to hold her in bed or a wheelchair. I was told it is the care recovers right to fall. A full time home caregiver (If you can find one) is aminimum of $528.00 per day. Oh, and to add to all this I have been unable to get a hospital bed or Houry lift through Medicare. If we stay here we get no help, no respite, and harassment from the APS and the home owners association. My faith and my hope are about gone. I don't know what to do or where to go. Any suggestions? And one other thing. I called our congressman, Peter Roskam, for help or advice and was told his office does not help with things like this. If I stay here, we are lonely
or not....I thought you would know.
Can you call up the Bible Prophecy Conference leaders and ask if you bring your wife, can someone watch her?
You have said, "if we stay here we are lonely"
What would you like to do?
Sounds great. Got any suggestions where to find them?
Thank you for your suggestions. I do take her to an adult day care. They are great. Unfortunately, there is no van so I have to lift her in and out of the car. As for a caregivers group I have a funny but sad story. I went to a caregivers group meeting and met a lady from a support agency. She said she would call me the following week. She called and told me I needed to get involved in a caregivers group.I said, "Maam, I met you at a caregivers group"' S he said, "Oh, that's right. There is nothing else we can do for you as we have no more money. I'll send you some literature". I have tried several caregivers support groups but the meetings are usually in the evening or on a Saturday and I cannot get someone to stay with my wife so I can attend.
Thanks for the suggestions. I keep trying.
You sound perfectly capable of looking out for the two of you. That is good news.
For your wife's sake, you may have to give up some of the things you want. The storage unit idea sounds great! Maybe this is a situation where you can't have everything that would be best for you, and also everything that would be best for her. But keep looking for ways to mitigate your own losses as you care for your wife.
Have you considered an Adult Day Health Program for your wife? I enrolled my husband in such a program for 2 or 3 days a week. The van came and picked him up and brought him home. It is a good way for the impaired older person to have some social interaction and stimulation, and the caregiver to have a little respite. If your wife is ready for hospice, this might not be a viable option, but otherwise do consider it.
Another way to interact with people who genuinely care is to join a caregivers' support group. They may have some approaches you haven't thought of, and they definitely will be compassionate and empathetic.
Keep in touch here. We care!
I'm sorry that your daughter(s) are not more involved in their mom's life.
I should mention that people should be careful what they sign Besides these long legal documents there is another trick. Hospitals may not admit a patient but put them in for observation. Observation is covered under Part B of Medicare and not everyone has that optional coverage.
There is another old saying, "So heavenly minded they are no earthly good. She does not have time because she is so involved in her church. And as she once said, "People are embarrassed by her Mothers condition". She doesn't want to be bothered
Most assisted living units are too small although I have been considering renting a storage unit and making it into a library to keep my resources in case I ever get back into ministry activities And Medicaid here in Illinois is broken and they do seem to want to impoverish the remaining spouse. Fortunately, I and my wife have always had a policy of 10% for the Lord, 10% for retirement, and live on the rest so Medicaid will be a few yeas off.
And yes, I will continue to do research and have an open mind even if it is sometimes difficult to do. Just yesterday her doctor ordered a UTI test and the hospital lab wanted me to sign a multipage authorization for them to take control of her treatment, to bring in whatever doctors they want, and for me to pay for anything that was not covered by Medicare. And that was just for a test. I actually found another medical group that did the test without having me sign away all rights and signing a blank check.
For respite, why couldn't your daughter be the emergency contact?
Why would you have to move to an apartment too small for your books and tapes? Will you be applying for Medicaid? They are not interesting in empoverishing the community spouse. Have you spoken to an Eldercare Attorney?
I'm glad you have found out about hospice. Given that what you " knew" about hospice was incorrect, do you think that you could do some more research and keep an open mind about other options?
This is not the right residential setting for two handicapped individuals, let alone an elder with dementia! I wonder if your daughter is somewhat in denial that she thought this would work for you. Have you been trying to hide your impairments from her? It is time to set her straight and ask for her help in finding more suitable living arrangements.
Instead of trying to find help to bring to you, I suggest you find a place to live where the help is already in place. That may be an assisted living apartment. Try to find one that also has nursing home care and memory care on the same campus, in case the time comes (it usually does with dementia) that your wife will need more care.
Being a care partner to a spouse with dementia is a demanding, lonely, heartbreaking role. It is also immensely satisfying on some levels, but it is hard to appreciate that when you are struggling with no respite.
If you were in an appropriate setting, such as assisted living, you both would see other people everyday. You might meet another couple you'll enjoy having dinner with. And other people who share your interests. No one would find you to be inconvenient neighbors. There would be handrails everywhere.
Could your daughter help you look for a better living arrangement? Could she stay with your wife while you visit likely prospects? Visit any you like more than once!
LBD is one kind of dementia that really does respond well to stimulation -- to seeing other people, to hearing live entertainment, to doing crafts or playing games or hearing music. Not so much at once that it becomes overwhelming, of course, but LBD folks do best with predictable routines as a backdrop to interesting diversions. I have a feeling a care center setting would provide this better for your wife than the "independent" situation you have now.
Please keep in touch here. We really do care, and would like to hear how things work out for you.
I agree that a 55+ community might not be the right fit for you and your wife. Have you toured local assisted living facilities? In an AL facility you would have more support on hand and grab rails galore in addition to other supportive services.
I'm assuming the $528 is for 24-hour care for your wife? When people get to a point where they need 24-hour care even assisted living may not be enough.
You wrote that you can't get a hospital bed or a Houry lift. Did you mean Hoyer lift? I would recommend that you hire a caregiver if you do get a Hoyer lift for your wife and not try to transport your wife in the Hoyer by yourself. And I must go back to my previous question: if your wife needs a Hoyer lift she may need a higher level of care than you can provide.
As for the hospital bed have you tried going through your wife's Dr.?
If your wife were on hospice you would have a hospital bed delivered and set up before the ink is dry on the papers. This bed would have rails. You would also have aides who will bathe your wife and spend time with her plus regular nursing visits and access to a social worker. Hospice also offers spiritual support offering home visits by clergy. Hospice is on call to you 24/7. Many people are under the assumption that in order to be eligible for hospice the person has to be dying and that's not true. With your wife's age and her LBD I think she would qualify.
You did the right thing in coming here and asking for help. Keep asking for what you and your wife need.
I'm extremely sorry that you haven't been made more welcome or offered more help by what is, after all, a community that is supposed to have been ideal for you. It sounds as though this over-55s place is more interested in cosmetic details than the realities of maintaining dignity and independence in older age. I've heard of a few like that and feel quite impatient when I read of them.
But I'm sure you do realise that in any case, given your wife's form of dementia, the time is bound to come when you and she will need a more supportive and better protected environment, so perhaps it will be a relief all round if you start looking at what's available as soon as possible.
The reason I ask about what APS is saying is that I wonder if that's essentially what they're trying to get you to do? If they come across as threatening or hectoring or unreasonable, it may be an unfortunate manner and high-falutin' language that are to blame, and not a lack of good intentions.
You are a remarkable man
Are you looking for a live in caregiver ? The $528 would be the cost of 24 hours but not live in
If your daughter is not able to help coordinate care for you then you might want to call your county agency on aging which can do a needs assessment and have a social worker help you
Unfortunately a 55 plus community doesn't seem like the right fit for you aside from the hassle of the HOA
You might need to go to an assisted living level of care
I understand that your concerns about your wife falling
Folks at mom's memory care facility fall all the time too but they work around the regulations
They will put a twin mattress on the floor next to the bed which of course can be against a wall
Or they will have the person sleep on the mattress on the floor
Folks tend to disappear when they hear dementia and I know LBD is quite difficult
I'm hoping night owl Jeanne Gibbs sees your post and can offer up a suggestion