I'm helping to care for my 89 year old mother-in-law ( in my home ) who has Alzheimer's. To prolong her quality of life and finances, we thought it best to move her in here. Sadly, the other siblings are not supportive.

It's been one year. Since moving in, her physical health has improved dramatically, but of course, mentally she continues to decline. Her doctor said she could live for another 10 years. She is still very mobile. We have her in an Alzheimer's activity group (saving grace) She loves to eat more than anything else. But she is also very bull headed—a trait that wasn't there when she was sane. The constant repeating questions would be more tolerable if she was somewhat like the nice lady that once was—but she's gone.

I know it's only going to get worse. Is there any hope, or is it really just one long slog to hell? Honesty appreciated.

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Its a long slog to hell. And some point you might face the decision, I can't do this anymore. And there's no shame in that. None. This is a difficult journey. So hard. We all make decisions based in the facts of OUR SITUATION, not someone else's. This is a great group of caring peeps. We all wish you best and want to help. Take care of yourself.
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MindBlown Apr 2019
Thank you. It's strangely comforting to hear the truth from a stranger. maybe it's just comforting to hear the truth. Either way, all the best to you.
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Mindblown - how I wish you had found this forum BEFORE you moved your MIL in with you. You would definitely be told by many many of us to NOT move her in. She will continue to deteriorate mentally and literally suck the life out of you so she can live.

My Alz. mother lived with me for 2 years, and she turned the life of my whole family upside down. No breaks, no vacations, no private time, no peace, only stress 24/7. I was burned out. My kids and husband stressed. Finally I had to move her out. We couldn't stand living in a psych ward any longer.

My recommendation to you is to make a plan for your exit out of this situation. At what point will you say you've had enough and draw the line? Discuss that openly with your husband and siblings, tell them they are expected to help.
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MindBlown Apr 2019
Thank you for this. It gives me much to think about including what an exit plan actually looks like and what is my limit. I’m not sure what my limit is... but some days are definitely harder than others.
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Exit plans would be things that include getting her assessed to know what level of care, finding a facility that meets current and future care needs, figuring out finances either self pay because she has the money or government assistance because she doesn't have any assets or money.

The deciding factor is a personal line. I can't deal with my dads diapers, he needed professional care. Others have their lines, you and your spouse have yours. It's okay to not do certain things, don't let anyone tell you different. I knew my dad would not be well cared for because I couldn't deal with his business, it's wrong for me for multiple reasons, so I had to put him where he would get the best care possible.

I guess you could call it the deal breakers.

Most importantly is making sure that she is getting the best care possible and having all of her needs met and quite frankly I feel that with Alzheimer's a facility is the best option. They require a village as they decline. It is such a long slog that having people not emotionally involved is a better solution, in my opinion from experience.

Hugs, it is an awful disease that steals our loved ones one brain cell at a time.
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I have found a board n care aka 6 pack close to home. This was my way of handling mom and then also aunt. Then I was able to put them in one home..

My doctor asked me what I was doing differently? My stress level declined enough he could tell something changed. mom is gone now, and I am still taking care of aunt. My family is burned out, then won't even go with me to visit.. we are only a 2 minute drive.

Talk about burned out. Do your homework, and find a place close to your house so you can just pop in anytime you feel you need to and see her for 4 minutes and leave.
Helpful Answer (19)

This is a very delicate situation.

As this is your Mother-in-law, and not your own mother, let your spouse first arrive - on his own - at the decision that the situation needs to be changed.

I’m sure this year (and the general transformation of his parent) has been very painful for him (even if he hasn't been around as much as you). His siblings have deserted him. He probably expected them to grow closer and provide support in these circumstances. If you push too much and too hard, he could feel deserted by you also.

If your spouse is in denial, take a “girls’ trip” or week/weekend away with friends. Put him in charge for a while so he understands just how difficult and unmanageable this has been. When he says, “this is too hard,” hold his hand and agree. After he arrives at that conclusion, reassure him that the quality of the time he spends with his mother will improve when someone else is assisting with her personal care.

Keep in mind that as her condition worsens, it might become increasingly harder to find a facility With an available bed.

Don’t focus your care on MIL, focus your care on your husband. He’s suffered a tremendous amount of loss. He needs you.
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Countrymouse Apr 2019
The spouse might be a wife. Not that it matters tremendously, what you say is still kind and thoughtful :)
Does she know who you are? If not then stop helping out. It sounds like you wouldn't be caring but it is a fallacy and you should not guilt yourself over it. As long as she is getting good care then you have done everything you can - accept continuing to help care for her is something you are doing for you not for her and then decide if you actually want to be doing this for you or if you would benefit from doing something else.
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It is very sad when these things coworkers husband had alzheimers, and one day she came home from work, and he pulled a knife on her, and chased her down the hall yelling "Who are you? What are you doing in my house? I'm going to kill you." they have been married 40 years....just that morning he lovingly kissed her goodbye wishing her a great day, but she returned to a whole different person....this is a horrible disease...If that "nice Lady" returns...cherish it...try to remind her of special memories you both shared, bring out the pictures, etc. perhaps there is still some of that "nice lady" in there somewhere. Same thing happened to my father...he was nice one moment and miserable and swearing the patient...I know it's hard....
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ALZ is a journey declining into absolute misery for everyone. I understand and support wanting to keep someone at home in the early to mid stages for both comfort and financial reasons. BUT, you need to understand that at some point there will be a need for 24/7 supervision/care and at some point, the person you loved in going to disappear and be replaced by someone who may have no idea who are. Most of us do not have the financial resources to get enough in home care help to keep someone at home once they need 24/7 care. Sometimes we can get enough help to maintain him/her at home if they only need 24/7 supervision and can still do most ADLs.

Short term, I suggest you contact your Area Agency on Aging to find out what adult day care and in home respite care options are available for your MIL. Having even a few hours without care giving duties each week lowers your stress levels a lot and can allow you to care for someone a lot longer without compromising your own health.

Long term, I suggest you begin exploring MC placement options and determining how you might be able to finance that option, maybe private pay until Medicaid. A lot of MCs that do not accept a Medicaid admission will accept Medicaid payments after a number of years (1-3 usually) of private pay. If you are sure Medicaid will probably be needed at some point, I suggest only considering MCs that accept Medicaid after private pay.

If you can get to a point where you can "see" the repeated questions and other behaviors as the disease and not the person you have known for so many years, it can get easier to tolerate the behaviors without getting so stressed out, at least most of the time. I try to hold an image of my mother as she was before MCI and answer that lady, even when the lady in front of me has asked about her shoes 5 times in the last half hour. Your MIL's actions are not within her ability to change but you can still change your reaction to those actions.

Good luck and God bless you for taking on MIL's care.
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disgustedtoo Apr 2019
TNtechie - Only 5 times in half an hour? Consider yourself blessed!!! :-D The repetition is annoying, it can quickly get under your skin, but once you understand this will NOT change and YOU have to change how you react to it, it does get easier. Listening with half an ear (or less), just making occasional appropriate type responses, can make it more tolerable. Kind of like keeping a ear open for a toddler, to ensure they are not getting into trouble, but not really actively interacting...

As for OP - decision should be made by you and spouse jointly (the rest of the family would be nice, but don't hold your breath on that!) so that you both agree if/when she would need to be moved. If you are providing all the hands-on care and spouse is not really active in participation or interface, then certainly your thoughts should hold more weight. Some people who are not hands-on or don't interface much with their own family member do not see how difficult it is. If you are in this situation, then definitely you need a weekend off with your buds and spouse can take over to see what it is like...

While discussing this with spouse, check out various places, gather all information and ask MANY questions regarding what is included in the cost, what happens if she needs more assistance, etc. Consider what you think are the best places if she can self-pay, but if you think she might need financial assistance, it is better to only consider Medicaid facilities as you only want to move a person once when they have dementia. As long as she doesn't need any skilled nursing, look at Memory Care facilities, not a NH. Bring spouse along, at least for a second visit to the places you prefer. As for the rest of the family, if they start piping up after the fact or criticize, have no problem putting them in their place. They washed their hands of it, so stay out of it now - period. Do NOT let them guilt you on anything you decide. They decided to butt out, so they can keep their stupid butt out!!
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unfortunately, Alzheimer’s leaves our loved ones as a shell of their former selves. Most people on here would agree, moving a patient into your home is NOT ideal.... your life changes as your home becomes your 24/7 workplace.
Patients require more care as time goes on, whether its physical or mental. Cognitive decline doesn’t improve. Ever.
there will come a time when you won’t be able to leave the house, let alone get in the shower or run to the store by yourself. Caregiving is 24/7.
in the meantime, consider asking her doc for some mood- stabilizing drugs. They can help with the anxiety and anger issues.
In the long term, do some legwork now for memory care. My mother cared for her mother in law, my gram, in our home for 48 years. My gram went into Alzheimer’s care unit at age 90, and she died at 91. The evaluation team said my mother kept her at home “way too long”... as she required 24/7 monitoring. My mom passed away at age 74... she never actually had “a life if her own”. She missed so many things with the family, her grandkids, and her friends because she was caring for her mother in law, and couldn’t leave her home alone. It took a toll, and now she’s gone.
Just make sure you account for things you won’t get to do for the next 10 years, and seriously weigh the cost of keeping mother in law at home with you. In my mom’s case, the things she didn’t get to do she will never get back, and now it’s too late anyway.
best wishes, as its not an easy road.
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That seems to be a standard phrase from doctors..."could or will live another 10 yrs". This is being told to my MIL. How can they know? At some point things could get worse and a facility will have to be considered. A family friend got so bad he would escape the house often, even with locks etc. One night his wife was woken up by a neighbor who had found him outside, he had fallen down the exterior stairs and hit his head, was lying in the snow. It was freezing outside and the neighbor's 2 dogs went berzerk with barking when she let them out briefly, so the neighbor went to investigate and found him. He was taken to hospital and was ok. Later, he would pound on the walls of his bedroom at all hours of the night. It is hard to tell how long and when things will get worse. Everyone is different. My mom became very docile and bedridden for 2 years, though sometimes yelling with visions in the middle of the night. Keep an eye on everything and maybe have a back up plan if and when a change of care is needed.
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Isabelsdaughter Apr 2019
My Mom was the same, bedridden, docile and slept alot the last years. She had lewy body dementia. And In the middle of the night, she would yell and scream and get out of bed. I was afraid she would fall down the steps.
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