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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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You must face the fact - it will get worse and you will be upset more and more and get very distraught and suffer. You can't do this - you must remove the source that is causing the problem - there is no other way. And don't feel guilty. Some people can handle this behavior and let it run off them but others can't - I know I could not - so please get busy looking to place her I know you can do it and you will have the peace you deserve.
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When I was a nurse we found that for some Alzheimer's patients having a "task" to help with made all the difference. Some times it was as simple as a box of wash clothes. We would ask if they would be willing to help fold these and often the women were more than happy to sit by the hour and fold clothes for us. They seemed glad to be doing something; they felt useful again. We would pass and say "Oh, thank you! I just don't have time to finish those" and it would really divert patients. All that said, I don't believe your Mom, your REAL Mom, who is slowly disappearing into the depths of all this, would want you to give up your life for her own. When it is time to consider care on the outside, do it; know it is right for you, and may be more right for her than you can guess.
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I think you know what the answer is. Alzheimer's is a degenerative disease which shrinks the brain. It's going to get worse.

I'm sorry I don't have better news. My mom, who one year ago was able to call me on the phone, visit me, and walk up and down stairs, is now wheelchair bound, much less conversational (phone calls are out), and is in Memory Care. She can no longer visit my apartment as there are stairs-- the last time was at Thanksgiving. She'll be 94 in July. She can still feed herself but when and if that ability goes, she'll have to be moved to skilled nursing.

To tell you the truth, it doesn't get any easier for me, emotionally. Each time her abilities decrease it breaks my heart. She still knows me and I get a big smile when we see each other, and we both tear up sometimes when it's time for me to leave.

I still value and cherish the time I have with her. It's just very different now. I hope that telling you about my experience will help you with yours.
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"I'm forgetting the person I loved... and I don't like the replacement. Where is the bottom?" Are you talking about yourself or your MIL (mother-in-law)? I ask because when I burned out taking care of my inlaws, I was the person I was forgetting and loved, and I didn't like the replacement, the sleep deprived, sick, angry, replacement me.
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I am so sorry this is happening. What you are feeling, anger, despair, sadness, is all normal. You must remember the good times and try to think of them - the way she was before all this is happening. If you are finding it is affecting you to have her with you, then you must be strong and face the fact that if she stays, she will destroy you. She cannot get fixed. It will get worse. Find a safe place for her - there are options - then remember the past and get out of this cycle of abuse. And do NOT feel guilty. There is no reason for that - you cannot let her harm you and she will if she stays with you.
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This may sound "good" or sound bad, but I really wonder about the doctors idea she will live ten more years. I don't know as much as doctors, but the rule of thumb is that ones life expectancy with ALZ is about half of that you would have without ALZ. For an 89 yo your life expectancy is what, maybe 6 years? So three years with ALZ. One always thinks of ALZ effecting your memory, and this is true, but your brain controls everything in your body, your heart, your breathing, your swallowing, your perspiring, and when the brain is effected by ALZ these other functions suffer as well.

My own dad lived two years after being diagnosed with ALZ. He was 91 when diagnosed and 93 when he died. The ALZ effected his ability to swallow which led to aspiration pneumonia.
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I understand. It felt as if my life had been hijacked. Please watch this Teepa Snow video, "The Gems": https://www.youtube.com/watch?v=5Qv2nIB-6Qw

I think you'll find it helpful. Please check out Teepa's other videos on YouTube. I think you'll find them helpful.
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Each person with dementia is different, although have a lot in common.  My aunt had vascular dementia, and her changes would be sudden.  Falls were common.  I could not lift her, so we became friends with the town Rescue and later the ambulance personel.  Read as much as you want from our questions and answers on this site, see Teepa Snow videos, and think of your own limits.  It all changes, and it is like having a child who regresses, slowly disappearing into toddler and baby.  I grieved as the lady I knew disappeared.

At first I got away for a week each year, and we had part time agency care givers. Then my spouse became ill, and I took on some of his chores, and hired others.  But I could no longer travel to see out-of-state relatives, or have a weekend get-away with him.  It is a lot of effort to be the management.  Then, in my 70's, I became ill and burnt out.  When my aunt went to a rehab, a friend and I went NH or MemoryCare hunting, found a wonderful not for profit place owned by the attached hospital.  I applied immediately, and was lucky to get her in quickly.  I learned a lot about myself as well.

I don't know if this helped or not, but it gives you some things to think about.  If you haven't yet, see an Elder Lawyer and get papers done.  I just discovered my aunt never named an executor, and the state she died in requires probate, even if relatives have agreed and no one is contesting.  Some here have had nasty surprises.  

One sure thing is, home care will age you quickly.  Bless you for doing it already, and good luck with your next stages, yours and MIL's.
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It is totally up to you and each sick person 's road is different. My mother lived with me 2 1/2 years and now she is in a facility 3 minutes from my house. I was too tired but I cared for my disabled husband at the same time. Siblings didn't help and only kept trying to get her money. I hope to finally get respite once the facility get their act in total gear. 2nd facility. Stayed 4 months in first one but was exhausted traveling there to do what they didn't. If you do keep at home a while longer, use senior day care for respite, do respite in facility, take time for yourself and see a psychiatrist for meds to help her be nicer. Eventually, you will probably need a place for her. It still takes a lot of time as POA if you do place in facility, so don't think you'' be 100% free afterwards because it is not the case. You could also take 2 years to heal after the death, so it is a long journey for you, no matter which options you choose.
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Make a white board where you can list the typical answers to the routine questions.
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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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A family member has alzheimers and was exhibiting personality swings during the day....this was a struggle for quite a while. She now uses a "low-dose" CBD product that her daughter says is working very well. Depending on what state you live in will depend on whether this is an option for you. In my aunt's case, her daughter must purchase the product and bring it to memory care as the facility can't do that, but the facility is ok with my aunt taking this product. I can see how this might be a good option, particularly for those individuals who struggle with keeping their weight high enough since many medications for dementia depress appetite. So, in the case of my aunt, her disposition improved.
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I don't know if this will help but when my mom reached the question stage, I got a blackboard and wrote the answers on it. She always wanted to know what day is it or if she had had lunch or did the mail come. These answers were printed on the blackboard and she just had to look at them. I was single so it did not interfere too much into my personal life, but I did have to finally retire early because she would call me at work sometimes ten or more times a day. I even put a small padlock on our rotary phone so she could not use it. But then she would go out and drive her car and get lost. She even took a driver's test when she was 80 years old and had Alzheimers for several years. She passed with flying colors, the trouper that took her out never even suspected she had it. In her case as the disease progressed she became more docile and slept a lot and finally stopped eating and I could not manage her because she was bedridden. I had to put her in a nursing home for the last two months that she lived. After the belligerent stage my mother became more like a small child and was always singing and very happy at all times, even when I put her in day care ( I told her she was going to work) everyone loved her there. So you see every case is different and if your MIL lives a few more years she may not continue to get worse in the way some do but may be easier to get along with. She will definitely reach the stage where you will need to wash her, dress her and feed her. But those are things you have already done for your children. I just wanted you to know that every one does not turn into a nightmare.
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It is so easy to reply in the same tone of voice that someone has addressed you. It won't do any good in this situation and will just exacerbate your own level of frustration. You really have to rewire your own way of dealing with questions. Answer what you can even if your reply is not going to last long in her memory. Have nice conversations on the days or hours the back and forth conversation is enjoyable to both of you. On the other days when questions are repeated often, maybe a simple reply of "I don't know" will help you out. You might also read up on the medicines she is getting to see if any can cause anger, agitation...example I just found out that tramadol can cause mental confusion, crying, outbursts, etc. for a 94 year old. While she could certainly use the extra needed pain relief at times, it is not worth the personality change either of us has to deal with. Also, bladder infections can create drastic personality changes and some medical staff fail to address it because they blame everything on the dementia.
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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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i think that most people with Alzheimer’s probably begin to show “different” personality traits as the disease progresses. If there are frequent agitation, combative, and/or noncompliance situations the patient may need to see a geriatric psychiatrist. There are low dose drugs that may help on as needed basis or ongoing basis. Sometimes the PCP will or can prescribe a trial drug.
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Honestly, it'll be a long road. That's why they call it the long goodbye. I would suggest you talk to someone about how your handling her repeated questions as it sounds like you lack some patience. When dealing with a patient that has Alzheimer's or dementia, you've got to be patient. Good luck to ya.
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Ricky6 Apr 2019
If you have lived through one of these situations then you know it is impossible not to lose your patience sooner or later.
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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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I can kinda sympathize (emphasize? No clue what the difference is) I lost my mom's dad a few years ago to who me and my mom were everything (I'm 27 and my grandma still here) once he got sick and beyond she was/is mean and expects me to go out of my way for things she can perform on her own only so she doesn't have to remove her butt from her chair she sits in I'd say 3/4+ of the day minus using the bathroom and getting multiple handfuls of snacks and now it's even worse all the time... luckily I suppose I guess you could say I'm getting closer to my dad's parents (I was pretty closeish with all 4 of them but my mom's parents live next to us n dad's parents live five minutes down the road so there was just so much more at my mom's parents house
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TaylorUK Apr 2019
Don't do it - be more unavailable - of course you want to help a bit, but a) this is making you bitter towards her and spoiling your relationship and b) it will do her good to do some things for herself. SO help with things that may be difficult, lifting, carrying, etc. but make yourself unavailable for things she can safely, and without too much difficulty do.
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It is very sad when these things happen...my 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 next....be patient...I know it's hard....
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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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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 :)
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The nice lady might come back, once a few more layers have rubbed off, but by then you will be so emotionally shredded it'll be too late for you to care.

It sounds as though you and your husband (?wife) should take the credit for a good year's trial, during which you have given MIL an excellent transition to being looked after, and hand over to a carefully chosen facility. You have nothing to apologise for or to be ashamed of.

When you say the siblings are not supportive: is that because they disagreed with this option beforehand? What was their view?
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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.
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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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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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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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