Help with mother-in-law in late stages of Alzheimer's. Any advice?

You are a very loyal wife and daughter-in-law and it sounds like you may need an extra set of hands on the days you are with her. Can you bring in a caregiver for a few hours on those days? Maybe you can get away with the kids during that time. Or find a babysitter for the kids and take a few hours to yourself.

There are 3 of you caring for your mom and even then I'm sure it's challenging. On the days when you're alone with her I think you need some professional assistance.

Sorry: *mother-in-law

We are considering getting assistance with her. Not just on days when I am here alone but days for my father law too. She was always a neat and tidy person so he never had to clean up. Now I am trying to take care of two houses. It is challenging when she won't eat or take anything I offer. She does not eat much when she does eat. Does any one know if that is part of it or just stubbornness because her husband isn't home? I'm not sure but it stresses me knowing she has not eaten in hours.

What medication is she taking? Too many? or not enough? or the wrong meds. Call the MD and review her behavior with him. Make sure Dad has a Health Care Proxy and you do too. It might be a good idea to get her into a hospital for a full evaluation and medication adjustment.

They were just at the Dr Thursday. She takes a cholesterol med and risperidone to calm her. He gave it to her yesterday and she fell. She is unstable anyway anda side effect is dizzyness. Not sure if it was the drug or not. Health care proxy? I'm only 29 and new to all the terms. Ask me anything about babies I will probably know the answer but elderly terms are beyond me at this point.

She should NOT be alone anymore. Her lack of appetite could be medications or it could be the body starting to shut down. Her MD would make the determination, so call him.

She is never alone. It has been that way for years. She started wandering so we made sure someone is always here. I live right beside them which makes it easy and hard at the same time. My father in law is getting lonely and wants to go out more but its hard for us to take her out. She just doesn't want to leave the house. She is only 65 and it seems young to me for her to be this far along. would the cholesterol meds make her not want to eat? I didn't think of that. Thanks.

Try not to give nefarious motives to someone with dementia or Alzheimer's. They do what they do because it's what feels good. Sometimes they do things because they're mad. That's allowed.

Does your FIL have some money to spare? If he does, he needs to part with some of it. I think this is the most common failure of families: not wanting to spend any money to help themselves, their family caregivers or their loved ones.
Tell your FIL to get someone in to clean the house if he can't do it. Call senior social services and see how much Meals on Wheels would cost and what other services might be available to them either free or at greatly reduced cost. Mom had a lady cleaning her home and doing laundry for 2 hours every other week for a total of $48 for the month. She had Meals on Wheels for $5 a day.

It doesn't sound as if your MIL should be alone. Please. Call your local police department for the phone number for senior services in your area. They will send someone out to interview her and the family, evaluate her and see what services they might provide to ease your burden.

We will have no choice to get help. I don't know how I will manage changing her or feeding her and a one year old. I try to do as much as I can so father in law is not so stressed. He is a diabetic and his Dr told him his sugar was high from the stress of it. She used the bathroom on herself just hours ago and Its a fight for her to cooperate. I speak plain, slow, happy and I still had to pretty much make her sit down to change her. I couldn't get her to lift her foot up for nothing. I read and read and it dont seem to help my case. I guess trial and error?
Is there an easier way to get them to brush their teeth? My father in law expressed how hard it was for him to get it done.
How can I do things without her getting angry with me?( like change her underwear and pants)

One of the tricks I've read about is to cut off Depends with bandage scissors - they have a short end over the longer blade, not sharp, but do a great job. Then have her wear a housedress on top of the depends. We just made the switch with my mother - I had to take all her panties away from her or she would pull them out of the garbage and wear those instead of her Depends. (I found them for $0.45 each at Amazon). You might have to take away all her pants too, say they are in the wash when she asks. But just like with babies, it's easier to access the poopie when they are wearing a gown.

The other issue is compliance. When you talk to your toddler, you command him gently, You have to do that with MIL now, because she is a child mentally.

Finally, the eating issue. You will find great relief when she goes on hospice (free, part of medicare), and they can go on and off hospice numerous times depending on condition. The service will come to the house, wash her and help you all learn what the body is doing as it winds down. Losing weight is one of the requirements before going on hospice Not only is is a normal part of dementia, but it shows the end is near. If she refuses food, it's ok - it means she is not hungry, and that is part of the way we are designed to come to an end. It would be so much better for her to maintain some dignity before she goes, rather than to be trapped inside her useless body that can't walk, move, or tell you she's hurting. That's a DNR / PLOST order is so important - when the Lord calls her home, you don't want to be in His way and block His will by making her stay here longer. God bless you as you assist in this noble cause!

Surprise. An excellent post.

Thanks for the kind words! And advice. I'm learning slowly but surely. Her moods have been OK the last two days but still using the bathroom on herself occasionally. She is eating but my 5 year old eats more! That is a big concern of mine. I read and a lot of the time the patient is a good eater.my hubby lost his grandmother last year and I saw how she ate so little. I think that's why it worries me so much because I see similarities in her and my mother in law. The way she talks, eats and sometimes walks. She will lean to one side on a bad day, her talking turns into sounds and won't eat.

It's ok when she won't eat. It's her body winding down, and it usually means that she can't digest food that day anyway. There are times in dementia when the kidneys, liver, stomach, etc don't work as they should and putting food in makes things more uncomfortable, gurgly, or even painful. Allow her to eat as much or as little as she wants. The leaning over to the side also indicates the end is near. Can you have her evaluated for in home hospice? That might well be the next step, and they can help you learn how to cope with her decline while juggling your children...

Sad news. My father in law doesnt want help with in home care. He thinks it will make her more angry.

Kristi, that is bad news. I was just about to ask why are you even hesitating to ask for outside help when you need it? You need it!! The meds may be wrong for her, and difficulty swallowing may be part of a risperidone side effect called EPS for extrapyramidal syndrome or drug-induced Parkinsonism...if the risperidone is really necessary, and sometimes it is, there is a medicine called Cogentin (benztropine) that in low doses will often fix that almost completely.

I'm not really sure why he is not considering. We have a family friend that sits with people for a living. She even lives close to us, not even 5 minutes away. We are still trying to get him to change his mind because I think he is going to burn his self out. You can't take good care of someone if your burnt out. In my opinion any way. I really hate to hear her body is winding Down. Today she has not ate anything and still trying to get liquids in her. She makes excuses and walks off. They don't match up or make since. Its frustrating as a care taker, just watching the decline.

That's why I posted about EPS, if she is walking around but holding herself a little funny and not swallowing, this may not *have to* be the end. Dad may just be very stuck in a rut and thinking he "had to" keep doing what he's doing even if it is not working any more. Maybe that's the key..."I know you decided to do all her care and not get outside help, but something had changed with mom and our best efforts are not wroking right. She's actually starving herself - she probably can't even tell us why, but we ought to check it out."

kristi27, I am very sorry for the stressful situation you are in. It sounds like you are a caring, compassionate person. Naturally your attention has been on nurturing young children at this point in your life. While in some ways elders with dementia may seem to behave as youngsters, they are going in an entirely different direction. It would be disturbing if a toddler ate very little for several days. It may be "natural" for the elder with dementia.

Since she is in the late stages of dementia it may be very appropriate at this point to have her evaluated for hospice care. This is a special kind of service for those in the end stage of their lives. The goal is not to "cure" them or make them "better" but to ensure as much quality as possible, and as much freedom from pain and distress, for the remainder of their lives. If she is evaluated and they concur that she is eligible for the services, take advantage of them! If it isn't time yet, ask what to watch for and call on them later.

My husband died in our home, holding my hand. He had been on hospice care 5 weeks. My mother was on hospice care in a nursing home for about three months and then was discharged from the program because she improved so much. Hospice does not hasten death or prolong life. They are just there to help the entire family through the natural experience as it unfolds.

Of course you hate to hear that her body is winding down. This is very sad. But if it is true -- and hospice can help determine that -- then knowing it and acting accordingly is a blessing to all concerned.

My heart goes out to all of you. Please keep us informed as this progresses. Many of us have been where you and where your FIL is now. We care!

My FIL had alzheimers and he was diagnosed around age 60 and passed away at 68. Your MIL will eventually stop walking, then won't be able to sit in a chair without reclining, and then become bedfast. The appetite will continue to decrease and then she will forget how to swallow which will make her high risk for aspirating food into her lung which leads to pneumonia or death. NEVER take anything personal with an ALZ patient. They really do forget ALL things such as dressing, bathing, or how to move their foot from one spot to another. They become angry if they are afraid, confused, or when the disease has changed the brain so much their personality becomes different. You all really need help because this beast we call alzheimers will only get worst. As for your FIL, sometimes it is harder for men to ask for help than women. He is probably hurting emotional and physically. But gently remind him there is great help out there for him and her. Hospice would be a blessing to you all and for your MIL. Our family had hospice for a year before my FIL passed. They came 5 days a week for bathing, sent social workers and chaplains regularly and then helped make his passing peaceful. Good Luck and remember one day at a time.

Thanks so much. When going through this it seems like your by yourself. Its very comforting to hear from all of you helping and sending prayers. The medication she takes to keep her more calm is new, had it about a week. We don't give it on really bad days. She was a poor eater before. I'm not sure how to handle the excuses she makes to not eat or drink. I can't understand what she is trying to tell us. I will say something to father in law. I'm sure my hubby has tried to talk to him to.

The excuses are likely not the real reason, though they might be a clue; she might feel full, it might hurt to swallow, she might be so constipated putting anythign else in there feels bad...or something totally unrelated could be off kilter. You could try just giving an acid blocker and seeing if that helps any. My FIL complained of terrible difficultly swallowing, his throat was tightening up - and it turned out he had such bad prostate blockage his creatinine was up to 3. How that connected exactly I am still unclear, but he actually got that taken care of successfully and the symptom never came back. Another month and we would have been deciding about dialysis though. Hope you can get her looked at.

My mom stopped eating and would only take sips of liquid. She kept saying she was thirsty, but then would only drink a sip. She walked up to the day she passed, but stopped talking a few days before. Eventually if they are not drinking enough fluids the body gets dehydrated and that leads to the end.

Sujean that sound like my MIL. Says she could eat but then don't. Same way with drinking. When we ask her to eat repeatedly it makes her mad. Yesterday she ate yogurt and maybe a quarter of a burger. Drank maybe two cups of water. My one year old out eats her.

Kristi, My mom not eating was so stressful. I knew she had to eat to live. I once asked her, Do you want to die? She shouted, No I do not. Then I said, you better eat then. She said, I just did, which was not true. She started to get dehydrated and I tried to get her to drink gatorade, but she would only take a few sips. It was a constant battle to get her to drink. She finally did die of dehydration, not enough liquid and the body shuts down. So sad to see them starve. The doctor said that was textbook dementia. Their brain stops telling them how to drink. My mom passed away 1 month ago.

I'm sorry for your loss. That sounds so much like her. We try and try to get something in her and it is a battle. My hubby made her eat today. He sat with her and fed her. Its hard for me to do that because I'm a stranger. I can barely give her water and her take it let alone feed her against her will. She has been so humped over today and frustrated easily . hubby didn't help matters but she has to eat and drink.she says the same things , she already did eat, why are you giving me more. Stuff along those lines. How can you get them to sit down? She's been bent over and now she is complaining about her back. We try to straighten her up but I don't think she can help it.

She only takes a few sips also and sets it somewhere. She used to drink milk and water. She will not drink milk anymore and she don't like the taste of water no matter what I put in it( flavor things you get at the store).

Kristi, my mom was humped over as well. My moms was from osteoporosis. She had 7 spontaneous spine fractures. What happens is the spine has a front part and a back part and they break on their own because of weaken bones. The front part collapses and therefore causes the bending forward. Because of the fractures of the spine it can be painful. The not eating part was so hard on me and I knew that it would probably be the way she would die. My mom went from 122 to 95 pounds in 10 weeks. Its the not drinking that really shuts the body down from dehydration. I knew it was serious that she drink, but she would only take sips. At this point there is nothing else you can do, but call in hospice. They can tell you if it is the end. We called in hospice, but mom passed before they started. It is very important that they have fluids and if not enough it will be the end. Dementia is such a cruel disease and they really do have a battle to fight.

I don't think she is in pain from her back. She just forgets she's leaning. We ask her to stand And she can straighten up for a few minutes but then reverts back to a leaning or bent over postion. I am a bit aggravated at FIL because he is busying himself. Which means he is going out more and " leaving me with the kids and MIL". Today is day four. My hubby helped yesterday, with MIL. I had to go buy school supplies and asked hubby to watch our one year old. After he said he didn't know if he could watch the baby and his mom I broke down. Its extremely stressful with them all and no one knows how much I'm taking on. I can take so much til I have my emotional breakdowns like yesterday. I asked " how do you all think I watch all four?" He said I don't know how you do it. I don't either sometimes. After I let my stress out he of course felt bad and watched the baby too. He knows how hard it is. My FIL and Brother in law do not. I guess because I don't complain a lot to them or they don't see my breakdowns. I realized yesterday she is not feeding herself. She has forgotten. Hubby fed her as much as she would take and at times she was very hateful. She has also forgotten where the bathroom is. If we take her in there she will eventually go. But trying to time when she has to go is the problem. I put depends on her just in case but FIL won't? I hate my kids are having to see the decline. The two youngest don't really know any different but my 8 year old does. She would help so much when he was born. Change diapers, feed him, hold him. She never fed the other two. She has held my one year old a handful of times. Its progressed so much in 8 years and fear for my hubby and brother in laws health. I have read about it being inherited.

Kristi, I feel your pain. You really should call in hospice to evaluate. I finally placed my mom in a nursing home 10 weeks before she passed. I knew she was on the decline, not eating and it was getting to stressful for me. Your MIL sounds to be near the end. My mom couldn't feed herself and wouldn't drink. Little did I know that she would only be alive another 10 weeks. When you are in the situation you think it will never end, so you feel overwhelmed. Know that your MIL does not have much time if she is not drinking much. The doctor told me he would be surprised if my mom lived another month. If she is near the end then it will end and when it does I know there is an emptiness and a sadness but a relief all at the same time. I am still trying to figure out how to carry on without her. I am glad that I could take care of her at her end stage of life as she needed me and I know that she appreciated everything I did.

She drank ensure today! Two of them! That helps a little. We have to keep on her to drink it but still its in her system. She ate bit of a hotdog and chicken sandwich. I know that's still not much but some nutrients is better than None. She will go potty if you take her in the bathroom and help her sit down. She keeps trying to sit on the opposite side the toilet is on. I don't like thinking about what is to come or how long she can go on. I don't want her family to think I'm crazy if I contact them and make the suggestion to come see her? But then afraid not to. So they can see her because we don't know what tomorrow brings. She has little family left but I know I would want to know if she were my sister. I just don't know what to say. I don't want it to sound like she has days to live but urgent enough for them to get the message. Any suggestions?