Moving my spouse to assisted living memory care - emotions

zimmedl

My wife has mid stage Alzheimer's.  I will be moving her to an assisted living memory care facility next month.  She has aphasia, phobias come and go, afraid all the time. lots of crying, I am the caregiver.  Help with all the meals, bathing, dressing to some extent.  All her meds and she is a Type 1 diabetic requiring insulin shots.  She has periods during the day when things are not so bad but also times when not so good either.  I can't leave her alone and when i take her with me, she will get anxious and want to come home.  I am worn out.  I am feeling so terribly guilty about moving her.  We have been married for 54 years.  I am so torn up about this and it is making me so sad to do this.  This is my first post and any support from people in my same position would be very welcome at this point.  Thanks

Ed1937

Welcome to the forum where you will get a lot of support. What you are doing is one of the hardest things you will ever do. Many of us have been there, and understand where you are coming from. Please post at any time for support.

Marie58

zimmedl, this is truly one of the hardest decisions caregivers ever make. If you're considering it, it is probably time. You're tired and worn out. You haven't said how long you've been her caregiver, but it looks like perhaps 6 years considering the date you joined this forum. The feelings of guilt are real, but try not to go there. (Easier said than done, I know.) 

You are doing what's best for each of you. Try to think of it that way. You matter, too. I'm sure you've been a great caregiver. You're turning some of that over to the MC, but you're still her dear husband and you'll be able to visit her and oversee her care. I placed my DH 2 years ago. It's all very sad...

zimmedl

Thank you so much for your kind words.  I will be visiting this site often I think.  I really need the support at this rough time.

zimmedl

Yes it has been around 5-6 years that this all started and has increasingly gotten worse over that time.  I have tried to manage both the diabetes Type 1 with insulin and the Alzheimer's but the work to do both have worn me out.  There are days when things are not so bad and I think maybe I can do this.  But the next day it is bad again.  The professionals and best friends keep telling me it is time to make the move.  I myself have had prostate cancer surgery and radiation within the last two years along with heart surgery.  Well I am doing well now, I am concerned about my own health and feel guilty for feeling that way.  I keep thinking I can tough it out but I don't think I can any longer.  Thanks for your kind words.

Elshack

I can relate to what you are going through. I placed my DH in memory care less than 2 mo ago. I had been his caretaker for 6 years and the last 4 have been difficult. He has severe bathroom problems ( Crohn's disease ) and of course no short term memory. He turned 92 in June. I will soon be 83. I visit him every day but I know they can't do as good a job as I did BUT I have to realize that I can be of no help when my own health suffers. You have had some serious health problems and you made a wise decision for both of you to place her in assisted living/ memory care. 

This forum has been such a help to me. I hope you can visit often . Just wanted to give you encouragement re: your decision. Hang in there! 

toolbeltexpert

Zimmedl I finally got my wife in an assisted living memory care, almost 3 weeks in this facility "where I wanted her from the beginning", she has been gone from home sine July 11. We have been married 44 years.  It is the right move for you if your that wore out. 24/7/365 is no piece of cake. My wife is 12 years in her journey, I thought I would keep her home forever, but things change. I was doing it alone, like so many and there are so many who are in this forum and I applaud the. My feelings of guilt are valid, if they weren't I would question my love for my dw. I don't want you to think anything you have to do " For Her" is a reason for guilt. My wife is safe, well feed, and I visit daily.  Don't wait to get your place picked out, it is hard finding a good facility and there are not many beds depending on where you live.  We'll I am sure others will come in with their experiences.

Stewart

Dio

I am definitely in the minority here, I will have no problem placing my DH when the time comes. I only wish it'd come sooner rather than later. We had a brief discussion just the other day when he had a sliver of lucidity. I told him that I was researching MCFs to ensure he'd be well taken care of if something were to incapacitate me, especially since we have no children. I also brought up that if this disease ever descended upon me, to please let me go. Send me to Switzerland. He immediately brought up what's stated on our Advanced Healthcare Directives. And I responded with a resounding, YUP.

Please don't tell me I'm crazy.

jmlarue

My DH and I have been married 54 years, too, and know how hard it is reconcile ourselves to the idea of living apart. Neither of us had experience living alone - both of us having lived with parents and siblings until we married. There was a time when I would have been wracked with guilt about placing DH in a memory care facility. Not anymore. Caring for his every need, alone, for almost 7 years has taken a heavy toll on my health, just as it has on yours. I've had two heart attacks and a stroke in that span of time. I am the one who's an insulin dependent diabetic and losing mobility due to worsening arthritis. I know, without question, that I have reached the point where I am not physically capable of doing it all anymore. It is a constant worry that another heart attack or stroke could leave me dead or disabled and my DH with no one to immediately step up to the plate as his caregiver. I won't take the risk of endangering either one of us. As difficult as it is for both of us, he remains in a VA hospital awaiting placement in a memory care facility. Many times, I've thought about throwing in the towel and bringing him home. For both our sakes, I need to put those thoughts aside and continue to push for his placement in a suitable care facility. It's the right thing to do and there's no place for guilt, or pride, or a misplaced sense of loyalty that should figure into that decision. It just is what it is.

DJnAZ

About three years ago my wife was diagnosed with Mild Cognitive Impairment. In less than 12 months her impairment became moderate. 6-9 months later it was advanced. About the same time her impairment became advanced she began to suffer from global aphasia. Taking care of her at home was almost impossible. I couldn't leave her alone and I couldn't take her with me. A simple trip to the grocery store could be easy, or it could be a nightmare.

After two appointments with a noted dementia specialist in Phoenix the doctor told me I should consider memory care for my wife. Less than a week after that appointment she went to the hospital with a very bad UTI. After 9 days the hospital neurologist and her doctor told me she needed to be placed in memory care, they located a center that would accept her and they only needed my approval. I said yes. That was the 28th of May this year. She went from the hospital directly to the memory care center.

Placement was clearly in her best interest. While she is physically healthy, her mental condition was too much for me to handle. Was placing her a difficult decision? Yes. And no. She is safe and secure in the facility and I know she is being watched and taken care of around the clock.

Has placing her been better for me? Definitely. I miss her dearly and always will. After almost 5 months apart it still tears me up inside to have to leave her after I visit. The staff tells me, however, that she calms down after a few minutes and returns to her new normal.

I'm adjusting to my new normal too and becoming more comfortable living alone. I wish you the best as you make a very difficult decision. For me placing my wife was the best thing for both of us.

zimmedl

Thank you for your reply.  You and your DW have been through a lot.  I have a similar situation.  My wife has aphasia and her speech is not understandable.  We also have situations where I can take her out to dinner or to the grocery store and it may be fine or it may turn into something that requires us leaving because of her anxiety or fear.  She can also have some days where she seems quite good and this is what causes me some guilt about placing her in a mc situation.  I have never been so torn about something in my life.

PastorB

Zimmeld,

That you are torn just shows how much you love your DW. If you didn't the decision would have been easy and made some time ago. I went through this myself about a year and a half ago. It took some time to get through it, but you will. 

My DW was trying so hard to convince me she had "gotten better" but she kept trying to tackle things she was no longer capable of doing. Cooking started out with one dish and became something else. Washing clothes was a nightmare.  Feeding our dogs a disaster - she fed them so often they stopped eating and then she insisted they were dying. Add the hallucinations and paranoia, the police knocking on my door at 9 pm because she thought I was poisoning her.

My daughter and I decided about two years ago that it was time to place DW. Problem was no facility was accepting patients due to COVID. In the meantime a dear friend of hers she met at a day program for people with cognitive impairments had gotten so bad that her husband put locks at the tops of all the doors, locked cabinets, and retired from his job to be with her 24/7. She ate half a bar of soap, had an allergic reaction, and was hospitalized. The hospital helped place her. Finally, things opened enough that I was able to place my DW, though I couldn't see her except on FaceTime for several months.

Guilt is our worst enemy in caring for our LOs. After I placed my DW, I continued to feel guilty. I still do from time to time, but I remind myself that she is safe. I visit as often as I can, but too often starts a round of desperately trying to convince me she should come home. Our daughter lives out of state. I had private caregivers coming in, but DW is stubborn and crafty and could get past them to do what she wanted. It was an unworkable situation that had to change. 

Make your DWs safety your number one priority and keep it there. Remind yourself that you have only two eyes, two hands, and cannot provide the level of around-the-clock care she needs. The guilt will pass when you see she is safe. You are not going to drop her off and forget her - you will still need to be her advocate and make sure she is cared for well. 

Praying for you, friend. I pray for us all.

Hoot619

Zimmedi,

I'll have you both in my prayers.  You say you have a place picked out, are you on the waiting list for a opening? In Michigan they are backed up LO's waiting to get in. Lists are long. They are having trouble getting staffed.

I know you are getting to the end of your rope, your health is very important by getting her into Memory Care you can spend quality time with her. You are  doing everything and it is wearing you down.  I wish I would have listened to others and had her on waiting lists at 3-4 places. There has to be an opening before they will except a new LO. Sometimes a very long wait.

For us Caregivers, lots of us kind of forget our own health. Our LO is going downhill and we focus on that.  Caregiving takes a lot out of us, others notice it we are lucky if we do.