Mum's moving in with me because her husband can no longer cope. How do I explain this to her?

If she's 'becoming urine incontinent' this isn't a signal that she is reaching the end of this journey. I hope everything goes really well, but also hope that you have a backup plan to place her in Memory Care. We ALL believe that our loved ones will not adjust to living in a facility, but they do. And you need to focus on your own life for the next 5 years. This is how long it could easily be.

And are you going to charge your mother to live with you? Are you prepared to be her 24/7 caregiver? Can she afford help to come in? Is your husband okay with this?

It is really kind of you to be willing to disrupt your lives to bring Mum to live with you when her husband is no longer able to care for her. And two healthy younger people should have an easier time caring for her than a spouse near her age. So your plan makes some practical sense, too.

You recognize that it is still not going to be ideal, which is realistic. But what would be ideal? A cure for ALZ, I guess. What you have to aim for now, in the the words of psychotherapist Pauline Boss, is "good enough." I found Boss's book, "Loving Someone Who Has Dementia," to be very insightful about the caregiving experience. I recommend it.

Has a doctor suggested Mum has only a year or so left? I'm surprised. Usually they are reluctant to give a prognosis like that until much closer to the end. You might consider a hospice evaluation. It may be too soon to start the program, but it would be good to have the benefit of their experience, and to start looking into this before need.

About your statement "Mum would no way adjust to assisted living." Many of us have felt that way and when it couldn't be avoided, discovered to our amazement that yes, our loved one could adjust. My sisters and I often asked the nh staff, "OK, who is this impostor, and what have you done with our mother?" Mom went to nearly every activity offered. WHAT?! She visibly blossomed in the nursing home for her final two years.

Also, I kind of doubt assisted living would be the right level of care for your mum in such an advanced stage of dementia. A nursing home might be more suitable, but she would be assessed if you decide to go this route.

Here is what the Alzheimer's Association says about late stage ALZ:
"Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the care needed." Know that it is not defeat to have placement in a facility as a backup plan, and to execute that plan if/when it makes sense.

I'll post again, with some activity suggestions.

What a loving daughter you are. We saw Dad through, in our home. It takes great sacrifice and much patience wrapped in love. Please know your journey will be difficult, but doable. I could not have done and do, without Gods help, and much prayer.
May God bless you and see you through. I will keep you in my prayers. You will have good days and bad days. Best wishes.

Thank you so much for your replies. I am absolutely dreading this journey, but I am so determined to do it. Mum was a fantastic friend/mother and although I will have plan b in the back of my mind if 'we don't succeed, I'm determined. Mum was amazing to us, so hubby is also willing to (try) see this through.
I need to get agitation meds in place so will be visiting drs on Tuesday.
As I said I struggle with activities to try and engage her with. (Yesterday I emptied my teatowel drawer and asked her to straighten it which kept her busy) She's no longer able to watch TV and read newspapers .
Yes maybe mum will last longer than 12 months, as nobody knows, but her deterioration has speeded up.
I will be using my mum's state pension to care for her.

If your mom liked to go for walks,, maybe she would enjoy short drives into the country.. no stops.. or it may make her more agitated when she realizes she is not going home. I also got my father large picture books from the library about things that used to interest him.. like trains or planes or sea life. No real "reading".. just pictures. For some reason he loved the maps in the books! Or music from their early years?
And if you are needing to look into placement,, try a MC instead of a NH.. it worked well for my dad's last month, and my MIL has been in one for about 2 years. I think tjey have more interaction and knowledge of ALZ

I moved my dad into memory care 14 months ago. He has adjusted and needed more daily structure and hands-on care than myself or my mother could provide. It's a full-time job and that means night time, too. Some of the residents in the memory care facility have lived there for a decade so it can be a long commitment. I love my dad but he would never have wanted me to give up a decade of my middle-age years to care for him.

If your mother still enjoys pictures, perhaps a digital photo frame loaded with outdoor scenes and/or birds and other animals in outdoor settings would be enjoyable. There are plenty of free photos available on social media from amateur photographers. There are even a couple of frames that you can connect to your wifi and deliver the photos by wireless. My mother and I visited Biltmore House and Gardens in 2004 and I took a couple of hundred pictures of the grounds and flowers. My mother loves viewing those images over and over again.

You might have another 6 to 8 years caring for her are you prepared for this?
My Husband had been diagnosed with Alzheimer's and I think he also had Vascular dementia. He "survived" ,I hesitate to use the word lived, for 12 years after he was diagnosed. Urine incontinence, then bowel is not the beginning of the end by no means.
Does she wander? Will she be getting up at night? A gate across stairs can be just as dangerous as the stairs themselves. She may try to step over the gate and fall down the stairs, not see the gate and trip over it.
Are you prepared and mostly is your Husband prepared for 24/7 care?
Do you have a bathroom that will accommodate a walker, a wheelchair? Do you have a shower that will be easy for her to get in and out of?
Grab bars by the shower? by the toilet?

If you think she will not adapt to a facility she will have the same problems adapting to your house. It is still a "new" place.
This will change your life, your Husbands life, your marriage. If you have children it will change your relationship to them as well.
Final...you can not nor should you do this alone. You will need other caregivers. Give yourself the same break you gave your Dad (stepdad?) So 2 or 3 others to help you out would be great. Keep in mind you will be with her at night as well and the nights can be just as challenging as the daytime.

I fought with myself to put dad in a facility because I knew he would not adjust. Well, he did just fine and as he was there I was able to see the care the facility offered to him beyond what I would have ever been able to provide for him. It was an eye opener for me and I saw him daily, had meals with him, went to the events with him provided by the facility and remained his daughter. It was a wonderful experience. He was well cared for and I was too so we were both in a good place. It was the best decision for both of us. I was not trained nor had the equipment needed to care for him as his condition got worse. I knew nothing of hospice, which of course the facility did and set it up in the final stages. I would think long and hard about taking in a loved one in the condition of your mum as was my dad. I found I was a better daughter to him by not taking him in. I will pray for you as you will need prayers. The other caregivers who you think will help you will not always be there and nobody can do 24/7 by themselves no matter how much you love a person. If you do take your mum for now, make sure you do your research and put her name on a list for backup. If backup facility calls, you can usually say I am not ready yet for her to go but keep me on the list. You will have a better chance of her getting into a memory care when you need it. Best wishes to you.

Activities to do while in your home can vary. Keep in mind it’s going to take much longer to do ANYTHING you do because you will need to supervise and repeatedly demonstrate everything. If she enjoyed cooking, have her help you by giving her simple tasks. Wash veggies, mix stuff, butter the bread. Housework- vacuum a room ( you will need to be her guide because she may do the same spot over and over), sweep, mop floors( you must supervise and prepare any cleaners). Fold laundry, rinse dishes as you place them in dishwasher. Outside, rake, sweep, pull weeds. Shopping, have her push the cart and you hold front of cart to determine where to go. There’s lots of things to do. Think of stuff you’d do with a toddler, but try NEVER to make activities seem childish and remember to talk to your mom like an adult. Give one direction at a time and be prepared to break tasks down step by step. It takes a ton of patience because there is a lot of repeating on your part and your mom will pick up on your tone. Engage your mom with your daily activities but remember Safety, ability level, and energy level needed. Limit what you do in a day to a realistic expectation, allow 2-3 times the time it would take you to do the activity alone, settle for good enough, and embrace the good times and you can increase your chances for success. Make sure you get Respite. 24/7 takes a lot out of you and you may not realize it until it’s too late. Best to you....

Given what you say she can do, I am surprised one would say she only has a year, though I guess no one can know on that. For my dad, I wanted to have him go back to his house after hospitalized for aspiration pneumonia. My mom would not hear of it, and even with me helping and hiring outside help. In the end, she was probably right. Got to be where my dad needed hoyer lifts to get from bed to wheelchair, we could not have done it. But just from the sound of things, sounds like your moms far off from that.

Dear Angela61,
Lots of good info posted in reply to your question. One in particular from Alzh101 I think struck home with me. Based on what you said it would appear that you can not have a productive conversation where your mother can tell you what she wants in terms of future care. I am writing from the perspective of a Dementia/Alz ? patient. Fortunately for me based on advice I've learned on this website I've been able to think things through and have made a lot of decisions as to what I want as far as future care is concerned.
My DW and I have had a 50/50 split in terms of sharing domestic workload at home for the 20 plus years we've been married. One of our favorite past times has always been cooking together. Together, we even cooked for many years for a Service Organization we were members of hosting banquets for between 15-300 people. This was a source of great joy. I understood early on when my diagnosis was confirmed why I had trouble preparing our meals on my own for our family. No longer could I follow a recipe. Now, we'll lay things out for the next days' dinner and while waiting for her to return from work the next day, I'll wash and cut up veggies, take charge of thawing the meat, I still do all the laundry for us and our 11 yr old daughter, shop from a simple list of things to buy from the store, etc. I acknowledge when I don't understand particular directions, or what my DW wants me to do. DW has been a school teacher for 30yrs, so she will patiently work out a way of explaining things to me so I can understand. On the occasion I still can't understand, she accepts it and will complete the task herself, or ask one of our children for help. I go and wash dishes for a Senior Lunch once a month given at church. Again, this is a task I can still manage on my own and the people running the lunch, know of my diagnosis, and willingly support me.
Yes, all of these things are useful in keeping me engaged and I believe anything you can offer your mother to make her feel she is being productive will be helpful to both of you. Finding what those things are, may be difficult at first. Read through this site and you will find a lot of help appropriate to whatever stage of Dementia applies to your mother.
Now is the time for you and your DH to discuss among-st yourself at what point you will both want to move mom in to some sort of MC/NH setting. Agree between the two of you that you won't keep moving the goalpost. A great bit of advice I received from a Priest friend many years ago, each couple's primary responsibility is to their dependent children and their marriage. No, we don't want to abandon our parents, but we can't be afraid of accepting the responsibility to do what is best for them, ie. turning them over to a setting that offers 24/7 professional care.
I made it very clear to my DW and all four children ages 11-37. Please put me in a facility far from home when I am no longer actively engaged in daily life, or so incapacitated that I can't do the things I love to do and be productive. I don't want them to be in a position of trying to care for me and having it become an all consuming part of their lives. I believe their priority should be looking out for their own families, and for my DW to be able to live a life engaged with the world enjoying life. I write this knowing she'll do everything she can for me, but respects my wishes on how I want the next step to go when I need more care than can be reasonably expected. I also encourage you and your DH, to think about what you want in terms of your future care, and get all the legal moves made now, while your health is good and you are of sound mind. That will be the best gift you can give to your children. My thoughts. I hope they are helpful. Best of luck and prayers for you and all of your family.

Jfbctc59, I think you are very brave & loving. Keep helping we caregivers that we do our best & make rt choices. With that aside I would tell you what I do when hubby diagnosed 11 yrs ago can still do alone or sometimes w little help (could be wants me close) are dot to dot w numbers, find lge numbers, & 100 pc or less puzzles. (Children's ok) it keeps him occupied for hrs & from rearranging things in house. He sleeps a lot but when he is awake I am then his activity director. Do you have that time. He also goes to daycare which frees me up..I am working on plan B & C. Have heard of Board & Care licensed memory care homes w 6 people at reasonable prices. Sometimes called Family Care. Read all you can about alz persons. Makes me more patient esp when I read on Alzheimer's Reading Room, our 2 diff worlds. The world they are in can never be chgd. We in our world can change. Don't feel guilty when you must make a better place for them for all. If you get sick or die from stress you can't help them (I've seen it happen in my support group) so make plans for best future for all.

Just remembered to tell you I have a laser beam that if my hubby walks across it it beeps a tune twice so I know where he is or that he's going through where he shld'nt be. Harbor Freight like $30. I move part makes noise (soft or loud) where I can hear it. Laser stays on floor.

Years ago, I had a Dementia patient who repeatedly wandered away, despite safeguards at the NH. One day, I gave her an old towel to hold and she started dusting. She dusted all day, every day, and never wandered away again. She was so hyper mobile, but this calmed her mind. Perhaps some chore your Mom used to love to do is the answer.

Y

Thanks for all your replies and wisdom. I'm honestly not taking this decision lightly. When mum was first diagnosed she said her only worry was that she'd end up in home. I told her early on that i would do my best to make sure she didn't. I don't know what memory units are like in USA but in UK they can be quite poor. There have been lots of cases of neglect, cruelty and too many antipsychotic drugs used. Mum's moving in on Saturday. I have appointment with her Gp tomorrow to ask for anti anxiety drugs, which I will use sparingly and only when needed.
Mum won't wander, she can hardly walk without someone to lean on. She has a Zimmer and a wheelchair which she refuses to use. Before her hip op she used to stand for hours and do all my ironing and we'd go for long walks. So unfortunate she broke her hip.
So many people have to go through similar problems and my heart goes out to everyone.
The only communication we have left is mums sense of humour. I can make her laugh so easily.
The big problem is going to be when she's at my house and wants to go home.
Will keep you all informed.

You will need to keep increasing amount of agitation meds ...& don’t allow sharp utensils in her hands...My 91 yo mother w dementia, while helping w breakfast, took metal fork out of my hand to stab me in my hand. She regularly curses, racial remarks, punching, scratching. spitting at aides who work here...weekend Aide quit & got tired of verbal & physical abuse. Good luck. Rethink your decision to have her home

I don't see this as a good idea at all - she should have professional help 24/7 - what you are doing is putting her through 2 moves because she will probably go into care soon - the professionals are rejuvenated every 8 hours with a shift change - many who go into care actually improve slightly as they get programmes designed for dementia that re-stimulate parts of the brain - my mom goes to about 8 per week outside of religious gatherings .... can you do this?

Forget about any promise not to put her in a home - that is just emotional blackmail - many say it out of rote because who puts that down as first wish for when they are older but sometimes you do what you have to do to keep them safe - many a caretaker dies before the patient - your mom could live for years yet but with more & more care needed for her - at some point you'll probably need to do it anyway & when this happens don't feel guilty rather know that you did your best - hire help early on because you'll need it & she'll be used to it as she makes the slow spiral downwards

If you go ahead, then have her husband come several times a week to visit her - this will provide continuity & give you breaks to get out .... you will need this time just to get in groceries etc. - now that you are taking most of the burden off his shoulders then he should do some help for you too - good luck

When it comes down to it, you are the only one who can make the decision of what's best for your mother. If you feel you need to have her with you, then that's where you need to start. Whether it works out or not, your heart (and hers) will be at peace knowing you kept your promise and did everything you could for this beautiful soul. She sounds lovely and I can feel the love you have for her, as I do for my own mother. If you're willing to make the sacrifices, and there will be many, then my first suggestion is to stay active in this forum and continue to ask for ideas and support.
My mother enjoys old photos and reminiscing about the past. Fortunately, we've both accrued boxes of pictures that need to be placed in albums - a wonderful together, hands-on activity. Also new photos of grandchildren have been a blessed memory exercise.

You will be included in my thoughts and prayers.
Blessed Be!

Thanks for all your replies. Yes Moecam, will be asking her husband to take her out maybe once weekly. But not immediately, as our excuse to bring her to ours is that her husband is going in hospital. I've been to Dr today and got some Diazepam. She's moving in Saturday, I'll see how we go. There is a day centre near us, but mum wouldnt want to go (unless I stayed). I will try to take her, but wouldnt want her getting distressed. Mum has Never been a sociable person, always shy and sensitive, these traits have certainly strengthened since dementia set it - she won't speak to anyone. All interactions are painful for her except with family.
Someone mentioned join the dot books, great idea i thought - mum showed no interest as I was trying to engage .
Keep you updated. Thanks again

Thanks mamachar, my mum is the most beautiful soul and I will do my best, I hope, till the end. As you say if I can't do it, at least I tried.
I certainly do need emotional support. Thank you

Although our mother can still talk, hearing is an issue, but I bought a "Boogie Board" which is an LCD tablet you can write/draw on with stylus (even fingernail works) and clear with the press of a button. THIS has worked well in communicating when she cannot understand what we say. Although it was more for helping her hearing, perhaps your mom has an unknown artistic streak? Coloring books? Mazes (probably not if the dot-to-dot didn't work.) Paint sets (supervise!!) I did just get an easy to assemble bird house that comes with paint so she can "decorate" it. Hoping they can put it out in the central garden area for her.

Picture books sounds like an interesting idea. Our mother likes to read, so she still gets her Sunday paper, they have magazines and books (since she might forget what she has read, she can already read them again!)

One thing that has surprised me is jigsaw puzzles. I love them and often work with another resident who is now 100yo! Mom joined us and now I will find her there working on one with the other resident (she's not very good at it, but does find a few!) The surprise is this is NOT something she would have done previously. Not her thing. The only hobby she had (besides shopping for bargains and entertaining, long ago) was sewing, but she stopped doing that years ago. Oh yes, coupons... always collecting, never using! So to have her take to the jigsaw puzzles was a surprise! Certainly start with the smaller kiddy ones (I've seen some with as few as 24 pieces.) If she likes it and it keeps her occupied, you could get larger ones (I have seen 100, 300, 500, 750, 1000 pieces, so there are plenty to choose from!) You should probably avoid the really "busy" picture ones. They do tend to be harder because there is so much going on it is hard for them to find the right places!

Others suggested folding laundry - any task that was pretty much rote for so many years will still be there. You said organizing the tea towels kept her occupied for a while. Have her fold all the towels from the laundry and then later mix them up like they were just done (maybe warm them in the dryer a few minutes) and have her go at it again! She won't remember she did it already, that day or the next day!

It would be nice to find something non-rote to do, to stimulate the mind (this is something they try to do in the MC unit mom is in - different activities to keep the mind working!) We have yet to find anything beyond the jigsaw puzzles, but plan to keep trying other things.

Hoping things work out well for you!! It is great to hear at least one case where mom is still a pleasure to be around and you had a great relationship prior to this!

Thanks for your thoughtful answer disgusted too. Mum moved in today and we did the laundry fold. I washed all her clothes and she took great delight folding them ready to iron tomorro. Ironing was always a pleasure for her before her hip op so I'm going to see if I can somehow lower the ironing board so she can sit and do it.
And yes I'll try the jigsaw puzzles. Tbh I think she's too demented to Even a small jigsaw, but will try. The move today wasn't as bad (yet) as I anticipated. She's asleep now but I'm dreading her waking during the night and being frightened coz she's not at home.
Here goes...wish me luck.

Devil's advocate here. You most likely are going to see a drastic decline in mom with this move. Dad may take her out once a week, but by the first time she may not know him. If she does she will get agitated when he leave. She will become combative and angry. Saw ALL of this in my mom when she and hubby moved to a facility. He in assisted living, mom in memory care.

Good luck but I do not think this is at all a good or feasible plan. I do wish you the best.