FIL Has Alzheimer's

Gamma has offered terrific advice. It really sounds time to get in the medical help he needs in the form of home healthcare or memory care assisted living. Dementia care is beyond the scope of what most volunteers can handle.

Probably the best thing you can do is just listen. I wouldn't try to shape her perspective of things. I know when my parents managed the care of their moms (who both had dementia), it was really aggravating when others would offer feedback, "Oh, she's just forgetful. Seems fine today!" That wasn't being helpful. They needed people to offer meaningful help.

Gamma has offered you all of the info. you need to really make an impact.

This is an incredibly difficult time for her. I know it's hard, but try to have patience. And please realize that when she is complaining to you, it's not because she 'doesn't get it'. Sometimes it doesn't matter that he's not _trying_ to upset her. He's upsetting her, and sometimes she is going to need to vent. It's frustrating to go to the grocery store, then come home and have someone eat all of something you bought so that you have to go again. Even if they don't know they did it, it's still frustrating - and it's ok for you to acknowledge that it's frustrating when she vents to you. Listen with a sympathetic ear. Don't minimize it or think you need to solve it, she probably just needs someone to listen and validate that this is hard and she's not crazy.

That said, there may be things you can do. Try to find the local senior center. Often they will have free lunches on weekdays, and even transportation. That would be a great way for them to get out of the house together. She could talk to other adults, and so could he, and no one will mind if he repeats the same story three times over.

Also, talk to the local agency on aging. Have you checked to see if she can enroll him in adult day care? Usually the local agency (in PA this is run by the county) offers services - everything from adult daycare to someone to come in and help with bathing, etc - on a sliding scale, so it may be more affordable than you think.

Also, any chance your dad is a veteran of a war? If so, he may get assisted living benefits through the VA.

I know this is hard for your entire family. But keep reminding yourself that she is watching the person she loved slip away, so it is hardest for her, both emotionally and physically.

In my experience as a home health aid...most of these programs are included in medicare and medicaid and by most insurances. Many times older people, especially women, don't know how to find out about assistance programs or they've been told they might not be able to get help so they just give up or don't ask. Even if they had extensive careers outside the home.

He is disabled. He qualifies for disability. He is never going to be better so this is a permanent disability. His doctors only need to write a letter/prescription that he needs care and assistance from home health agencies. AND the co-pay, if any at all since you imply they're lower income, will be next to nothing.

In all my patients only one paid anything out of pocket. Her husband and she had both worked and he had a kidney disease and was already in a wheel chair but was able to do dialysis several times per week. Taking care of him caused her health to decline to the point she had a stroke and ended up in worse off health than he did.

They moved their son and his wife in with them and that daughter in law gave up everything to take care of them. Even changing their diapers. She asked for respite care and we did 10 hours per week in their home. The DIL would often go to her room and take a nap the entire time we were there. They paid $13 a week for this care...they both had good incomes from their work and they were getting several thousand per month from retirement and disability. They were a good income family and only paid $13 per week.

This is fairly easy. Can you do some research and call some of mom and dad's local home health agencies to find out exactly what needs to be done to get him assistance?

Then you will have a list of things that have to be done and YOU can take a few days off and maybe sibling too and tell mom you guys are coming to get help with dad.

There comes a time, if he's already at a 2 year old stage, where they should go into a nursing facility that is specifically set up for Alzheimer patients. They are trained in how to make their end of life a much higher quality than staying at home and putting all that stress on the family.

I have had 3-5 family members have this. A couple of them, it was obvious to everyone else, the immediate family denied the symptoms and they stayed at home. They didn't have any sort of medical care and it was very hard. Very very hard. One of them lit up a cigarette while they had their oxygen in their nose....thank GOD their son saw them and grabbed it away, the air caught fire but it could have been much much worse.

I'm just saying, if he's already to the point of only being a toddler, your mom is right at the brink of needing him to be in full time care inpatient.

If you want your dad to be able to stay home much longer mom needs people in that house every day. Home health aides to assist in bathing him, keeping tabs on his health so they can know when more steps need to be taken and if newer meds might help him.

There are so many things your mom can have through a home health agency and if they are lower income they shouldn't have to pay anything.

IF they are well off and paying out of pocket for all this would be too much then their insurance needs to be contacted. Ask the worker what they recommend, insurance pays most of this if the doc writes that prescription/letter.

Please, find out what you can and cannot get for your dad. He needs someone who isn't worn out and exhausted who will stand up for him and help him have the care he needs.

I do not think you understand what she is going through, I don't think anyone can until they do. I got frustrated with my dad a lot, mom had it, but I never assumed I understood and he didn't. That is kind of an ignorant attitude to have, ya know?

It is very easy for us to look at the reality of it, for a spouse who is also the primary caretaker, not a chance and you really don't seem to understand that at all. My dad had more than enough money to pay for whatever help he needed, he didn't want any outside help. Only my brother and I and you can imagine that was hard on us. He never saw anything from our point of view but you know what, I think he had the right to be selfish.

For my dad it was never she is doing this or that to get to her, it was always him seeing improvement. They see what they need to see to make it through this in terms they can handle. Can you imagine your reaction if you were going through something this huge and your kids or daughter in law were telling you how you should feel?

Every now and then I would tell my dad that I understand he needs to see things as he does but not seeing the reality is hard on us. Then I let it go. At the end she was in a coma and he wanted to do everything to keep her alive, just in case she comes out of it. I had to ask him, and then what? What is life like if she wakes up? I hated doing it but at that moment he really needed to come to terms with it being time to let go.

Oh and we brought in free help for him but he wouldn't leave her side and every reaction she had he felt was her fear of these people and he refused to let them come back.

My in laws are going through this now. The onset started for my father in law in his late fifties. He had to be forcibly retired over his health which was their first hardship. There have been many more in the intervening few years. My mother in law is not in denial about my father in law’s condition. However, she struggles every single day to accept how he has become. She resents having to care for him. Then she feels guilty she resents having to care for him in this condition. The mere act of caring for him brings about a daily onslaught of overwhelmed and burdened feelings. She feels unloved and unappreciated by him even though she knows she should not feel that way. She feels like she is his mother and caregiver and not his wife. The emotions are wide ranging and draining in their own right. However, she can barely register how she feels because she is burdened with the daily demands of simply caring for him. As she has finally admitted this is not how she envisioned their golden years. She feels robbed of their lives together and she feels heartbroken the man she has loved her whole life has been reduced to a shell of his former self. The way my father in law acts is so completely out of character everyone who has known him is struggling to accept this new reality. I say all of this so perhaps you can think of different ways to reach out to your mother in law. I find commiserating and sympathizing with my mother in law to be most effective. I agree with her when she says it is not fair and it’s too much. It is all too much and there are no right answers and it is totally unfair. When my mother in law feels validated, then she is able to make moves forward or at least you can see her stress level drop a bit in that moment which is a minor victory. Others below have given you good suggestions. Keep in mind your father in law might resist help which will make it harder on your mother in law. My father in law has reached the stage where he is aggressive and fearful. Managing him is hard work and incredibly challenging even with assistance. The family has put an ID bracelet on him because he has wandered off several times now. There are support groups and help options out there. My thoughts are with your family during this difficult time. Good luck.

I think she needs a support group. You can probably find one online or ask his doctor's office for a suggestion.

It is very hard when a family member has any kind of dementia, but I agree that your MIL sounds like she's in denial to an extent. Depending on his insurance, a PT nurse's aide may be covered in whole or in part and give her a break from some of his care. My grandmother had one come in 2x a week for a few hours so she could get out, or clean the house or whatever. Does your MIL know your mom? Would she be willing to talk shop with her?

I think the hardest time with dementia is when it starts. When there's a glimmer of what was and when the person is still not "that bad" (not bedridden/non-verbal).

When she says you don't believe her, have you asked her what makes her think that? And listened? Sometimes people need to feel heard to move forward. Even if you already know what they're going to talk about, they need to say it.

Alzheimer's is an evil disease and so many families fight putting someone in a nursing home because they have heard horror stories. The only reason my grandfather could stay home as long as he did was because my grandmother was a retired geriatric nurse. It is HARD on the caregiver. I hope she also considers her own limits. Would she be willing to place him in professional care?

First, you are great to be so concerned. You are doing the right thing to want to help and to see how stressed MIL is getting.

One thing you can do for her: Find her some peers with the same issues.

Your husband and his sister can find some local chapter of the Alzheimer's Association or any other organization that works with families of Alzheimer's patients. Also check with all the local hospital systems--larger hospitals have extensive support and advice programs for families and caregivers of the chronically ill.

What you're seeking is a weekly support group for the families of Alzheimer's patients -- groups MIL can attend where she will meet other people who are in exactly her same situation and who can tell her what to expect better than anyone else can. The first few times, maybe you can drive over -- I know it's two hours -- but one of you can watch FIL while she goes to the first meeting. One of you may need to TAKE her and sit in the car and wait for her to drive her home, so she cannot make excuses about not going. She needs a peer support group to give her ideas, advice, emotional support. Your husband and his sister also could benefit from support groups in the areas where you live, so they can learn more about what is going to happen.

Your husband should get the doctor to meet with MIL, your husband and his sister and explain the progression of this disease and what to expect. This is crucial. If the docs are just tossing meds at dad and sending him home, but not helping MIL connect with support groups, giving MIL informaiton about home care options, etc. -- then your husband and SIL need to get very assertive with the medical professionals about getting more realistic advice to MIL.

If MIL and FIL are on limited income, it's time to explore at what point they will be eligible for Medicaid (though they may have to spend down assets first, they should be able to keep their home). Are they on Medicare at all? What will and won't it cover, if theyr'e on it? Do they have a Medicare supplemental insurance? (We were surprised how much my late mom's Medicare supplemental insurance covered when she really needed help.) Have husband and SIL got legal, medical and financial powers of attorney for both their parents? If MIL dies suddenly, does some adult have legal power of attorney over FIL? It's essential to protect them both. Maybe your husband and his sister have done all this and if so -- excellent. If not, it's time. MIL won't like it; if she's in denial this will be painful for her; but it has to be done.

I get the idea of keeping him at home as long as possible -- in his familiar environment he is perhaps likelier to do better, longer. So look at home assistance of some kind, and again, you and husband and SIL may need to set up funds of your own to help with that. Call their insurers and find out what might be covered even minimally, too. You mention getting help from churches but I would start first with the local city or county government; they often have a "council on aging" or office that handles senior citizen services; they won't provide caregivers directly but should have a lot of informaiton on local services and businesses that do. Also, in our area there are community centers that are aimed mostly at serving older citizens, and they always have flyers, information etc.

I know you said MIL has researched this but you and the other adults might be able to find more than she did.

Also, please, please start looking right now at long-term care homes that specialize in Alzheimer's patients. It may not be time to put FIL into care yet, but you don't want to be doing rushed research when you suddenly find MIL just can't handle him any more. You may have to commit to having the adult children pay for some of this, frankly.

Not to be alarmist, but you need to be aware that her safety could be at risk eventually, even if it's not right now. He can be the sweetest man in the world and this disease can make him do things that are dangerous to her, himself and their home. My aunt's boyfriend nearly burned down his house by accident; our neighbor's husband, the gentlest man I ever knew, had moments of lucidity when he told his wife to put him into a care home because at other times he was so inexplicably angry that he feared he would hurt her, not even knowing who she was. And even where there are not risks like those, it just is so stressful on the caregiver spouse to deal with once the disease really progresses beyond a certain point.

Our neighbor was so reluctant to place her husband in a care home, but she also realized that it was a relief to her. Again, he did stay at home with her caring for him for a long time, but eventually her own health was suffering from the caregiving. She was much better, and less resentful toward him (much as your MIL is resentful at times toward FIL), and was able to have very good visits with him, once she was no longer his 24/7 caregiver and was able to get some respite for herself.

Your MIL may not be at that point yet or for a while to come. I'm just saying, consider planning now so that you younger adults are ready to help her get FIL into care when the time comes. And for right now, I'd help her get to a support group where she can hear from people in her situation.

G., I'm so sorry for you all. Alzheimer's is a terrible disease that takes the person we know and love away from us little pieces at a time. And for some, it lasts a very long time and is so very difficult on the family.

To be honest, what you can do is help her navigate the "system" to get him services that are available. You can live 2 hours away but get this put together through phone calls and research. You can find out how it would work to use medicaid. You need to figure this stuff out - you need to make sure that financial decisions are made that won't get you into a mess with medicaid.

Your family needs powers of attorney - both medical and financial. Has this been done? He also needs a will if he doesn't have one. The LAST thing you want is for him to die intestate.

There will come a time that volunteers coming in once in a while will not be enough. Your mom will not be able to continue taking care of him. In your research, you will need to find a place to take him. You need a DNR signed by his physician and your mother. No matter how she feels about it right now, this is really important. I don't know how old she was when she took care of her mother, but it has to have been a while ago. She is most probably a lot older now and it will be too hard.

Knowledge is power. Get that knowledge and get paperwork done. It is very expensive to go to court to get your dad declared incompetent because you didn't get Powers of Attorney done in time.

I wish you the best in this bad situation.

So sorry you are going through this. It's so tough.

Your MIL is half in denial, but also is half NOT in denial, because she looked into day care programs and other programs. So maybe she just can't stay focused enough to search available resources?

Before you call individual churches, please, your or your husband or one of her other children should accompany your FIL and your MIL to his physician. Or write a letter to the physician - anything to detail the exact behaviors your FIL exhibits so the doctor knows exactly how far your FIL has declined. His insurance or Medicare may well cover far more than your MIL and you realize, and it may be time to look into an assisted living facility. The doctor can connect you much more effectively with area services, social workers, respite care centers, and reputable professionals to help assess options. If your FIL is a danger to himself, this needs to be addressed, and your MIL needs support, both in coming to terms with this and with the sheer workload of managing a house.

There are programs like Home Instead that may be worth looking at. My cousins use that for his elderly, frail father with some cognitive decline and distinct refusal to leave the house. Obviously your in-laws finances are a factor but there's more available than what your MIL thinks. If she's overwhelmed physically and emotionally (which she understandably is), then evaluating possible services may be just too daunting for her. Even deciding what she needs someone to do may be beyond her right now. It's just one more thing for her to figure out.

It may be there her complaining to you is not a sign of her denial, but a cry for help that she can't sort this out herself.

Also, is it possible that she also has some minor mental decline? That can be a factor of her own aging (inability to organize thoughts) or just a stress reaction to his decline.

Get the doctor involved to start.

Look into the senior services in their area. Here it's the county agency on aging. They probably qualify for light housekeeping, companion visits, even modifications to their home (stairlift, tub chair) so he can be cared for more easily.
If you went for a weekend, would your MIL actually take advantage of that time or would she still stay with him.
Look into respite care.
Look into meetings in her area about memory care.
She needs to be educated. It does sound like she's in denial, poor thing.
If (God forbid) something tragic happens? An illness, a fall, wandering? He will most likely not be allowed to return home. That could be a GOOD thing for him--and her. She's likely not qualified to watch/care for this man 24/7/365.

Hi G.,

Our entire life changed when my Dad was diagnosed with
Alzheimer's. My sister and my husband and I with our girls, moved home. You have to decide what you are willing to do. First look into Gamma's advice. There's a lot of gold nuggets there. Also look into Hospice care. Alzheimer's qualifies and there are a lot of resources,

My next piece of advice is be very tender with your words to your mother in law. She may be in denial but she'll come to realize what is going on. This is her life partner. And her husband IS still there.....she won't let go until he's gone and you can't afford to agitate that. The key now is to make sure the house is functioning and dad lives out his life as happy as he can.

Your mother in law needs help, primarily your's and your husband's. It's a hard task..time and money and emotion. It truly is a labor of love.

God bless,
M.

I would find your entire family a support group. You all need information and to know what the "next steps" are. So sorry. It is so difficult to go through this. My Mom had it.

I'm sorry you are having to manage this from afar.

I highly recommend you research their medical insurance and call them directly and have him evaluated. I'm positive he's eligible for some limited in-home care.

I don't know of any 'volunteers' who just go into strangers homes and take care of people with Alzheimer's. Friends and family support networks would do this, but not strangers from one-off churches. That's just plain presumptive. Churches would however have affordable resources to offers. So someone in the family needs to invest in some part of his care and these difficult to manage twilight years.

If their insurance is not an option that you need to look into your state senior care options, like Medi-Caid. My mom, who has other medical and ortho ailments, not as debilitating as what you describe, qualified for an in-home aid care providers. The lady comes 6 days a week for 4 hours each day to help her with personal care, cooking, light cleaning of her bedroom and bathroom and taking her to doctor appointments. All for free.

Your mom sounds isolated and this is making her more isolated, so finding a local support group for partners managing Alzheimer's is really important for her own health and welfare.

I would also recommend you and family google organizations like "Home Instead" in your area. They offer affordable in home services until you can qualify for insurance options.

omg, what a hard thing. i'm dealing with something a little similar (FIL fading, MIL in angry denial) but not to this extent. at least we don't have the terrible specter of alzheimers.
i'm so very sorry for you all. :(
yes, call the churches. call senior centers. call alzheimers support groups. call everyone you can find, and yes, get her some help. even a companion/caregiver for a couple of hours per week will help. go to meetings. pay for a caregiver and drag your MIL to meetings.
we try to be there, and to give breaks, and to get them out when we can. getting ready to head over there shortly, in fact. but when the rubber meets the road, it's never enough.
my heart is with you.
khairete
S.

you cant make your mil accept the fact that her husband will only get worse, you can , however make things easier on the rest of the family by taking turns at pulling your mil out of the house for an hour or two at a time.while bringing a trusted friend or neighbour in to watch your fil, while his wife goes to lunch or runs errands with someone else..you dont need a big budget, you just need to get enough people together who are willing to give an hour or two or their time to help out..if the fil finances arent in order, now is the time to do it, get medical power of attorney papers drawn up, its also time to get his will and final papers together..he could live another twenty years, without someone legally taking over his finances and medical powers, he will be taken advantage of by every shyster that comes down the pike..K. h