Things I'm pondering lately

billS

As my wife’s dementia continues to progress I can see the day coming when I will have to place her in memory care, either because I can no longer keep her safe, no longer manage all of her needed care, or my stress level gets to the point of endangering my own health. Her latest MoCA cognitive test score was 6 out of 30 compared to 17/30 eight months ago and 24/30 4 years ago. So the trend is obvious and although I am doing OK caring for her at present I have started exploring options for the future, namely touring local memory care facilities. As I do this lots of questions swirl through my head, all having to do with the question of when is the right time to place her and how to go about it:

1. Her dementia behaviors try my patience 24/7, yet she is cheerful most of the time. Don’t I owe it to her to try to be more patient? After all, she has been my better half for 45 years and a huge part of our success in our life together. She has put up with me all this time, and of course there’s that “in sickness and in health” thing. 

2. I now have to do virtually everything from shopping to finances to cooking to scrubbing toilets, all while enduring her demented questions and interruptions without any of the intimate sharing we once had as equal partners. How do I know when I’m sacrificing too much of my own life for [sorry, I can’t think of any other way to say it given her prognosis] a lost cause.

3. We’ve lived in the same quiet, comfortable home for 45 years. It is familiar to her, even though she often asks to “go home.” Wouldn’t she feel lost in a strange environment?

4. Touring memory care facilities, it appears most of the residents are more “out of it” than my wife. At this time would she rebel and insist she did not belong there?

5. On the other hand, living alone with me on our rural property, she is often bored and lonesome even though we have frequent visitors and activities. Might she be happier in a more stimulating environment? 

6. Some facilities offers “respite care” stays, where she could be placed for a few days at a time while I get an extended break. Would she accept this, and would it make for an easier eventual transition to full time placement? 

7. In the past she has told me that when things get too hard I should place her somewhere rather than sacrifice my own health. Of course, that was her more lucid self talking. But should I choose one of her more lucid times and ask what she would think about transitioning into memory care, sort of seeking her input ahead of time while she can still give it? (We may be past that point already.)

8. Would the guilt of placing her be as stressful for me as what I’m going through now? 

9. Urinary incontinence has started along with ominous signs of worse to come. She went through a hostile period prior to antipsychotic meds but now I am her trusted friend. So what are my “lines in the sand” that will push me to place her? 

10. When the time comes, how do I explain where and why we are going? Just be honest and hope for the best?

These are the questions I ask myself, no one else can answer them for me. But I'd welcome any stories and words of wisdom from others who have faced similar circumstances. Thank you in advance for your collective wisdom!

60 falcon

I have no words of advice, just wanted to let you know I have the same thoughts and questions. I have even more questions but they're for another time. I'm interested to see what folks here say .

T. Slothrop

 Thanks for this thoughtful list. May I add a related question?

What will my daily life be like if and when my DW is in MC? 

White Crane

I, too, will be interested in what others have to say and/or advise.  I have similar questions and concerns.  DH has told me several times that if I try to put him in a "home" he won't stay; he will run away.  The thought of placing him brings both a sense of relief and also great sadness.  I am hoping to keep him at home as long as possible. 

Like you said, you are the only one who can answer your questions but I hope you find some good insights from others on this forum.  Sending hugs.

French

Hi billS,

Perhaps think to your 6 as a way to have answers to your other questions ?

billS

White Crane wrote:

....The thought of placing him brings both a sense of relief and also great sadness......

That really sums it up

billS

French wrote:

Hi billS,

Perhaps think to your 6 as a way to have answers to your other questions ?

Agreed, I think a respite break of even a day or two might help me gain perspective on living without her as well as how she would respond to placement. Thank you.

Ed1937

Bill, I think this is a good thread, and I'd be interested is seeing what others concerns might be. We have checked out a couple of places. They both had private rooms, which was a concern for me. I could visualize her getting up in the middle of the night, and falling unnoticed by staff for some time. No doubt we'll all have to make our own decisions because it's so personal.

June45

billS, your ponderings are my ponderings.  I tell myself, "just get through one more month" and then I will place my husband. At the end of the month I tell myself the same thing all over again, month, by month. Ocasionally,  I get out the brochure on the MCF that I have chosen and browse through it and daydream of being free from this nightmare. I don't like the person I have become.

jfkoc

thought reply;

1. being patient benefits both of you....maybe a bit of Zoloft?

2. please look into getting some help with the housekeeping...not only will this free up some time to relax but it is also another person to chat with even for a few hours....cooking?   many of up developed a new perspective on meals...if you make something make enough to freeze at least 1/2, sandwhiches are neutritional, crockpots are your best friend, check out mobile meals.....

3, yes, a bew surrounding would be ab adjustment but it is thought that going home has something of going back to a safer/more secure time...google Teepa Snow on this

4. likely

5. Some thrive with the structure and activity provided by a well trained facility

6. I doubt it to both

7. no...she won't rememberf

8. please  no quilt...but there will be moments of regret 

9. you will carefully calculate pros and cons...never forget that if placement goes horribly south your wife can come home

10. you say what ever is going to cause the least amount of distress and no, it does not need to be the truth

11. not asked but yes, get some outside help

June45

billS wrote:

1. Her dementia behaviors try my patience 24/7, yet she is cheerful most of the time. Don’t I owe it to her to try to be more patient? After all, she has been my better half for 45 years and a huge part of our success in our life together. She has put up with me all this time, and of course there’s that “in sickness and in health” thing.

billS, regarding patience, wouldn't it be great if we could take a magic potion and transform ourselves into "Stepford" spouses and cheerfully do all the grunt tasks we need to do all day long with a pleasant smile on our faces.  I can try all I want to be more patient. However I am very much human and I will confess that my patience was out the door after wiping my husband SIX times this morning (which is a big stress to my back)  because he can't stay on the toilet long enough to finish the BM in one or two sittings.  Did I scream at my husband...no, but I can't say that I acted patient either.

Beachfan

I had been researching MCF’s for about 2 years.  I could see placement looming since DH could do nothing for himself, or by himself.  He was easy in the grand scheme of things- - not a wanderer, not aggressive or combative, continent with my 24/7 hawk eye vigilance.  But there  was no conversation in our home, no disruption to routine, very little venturing out, I could leave him alone for several hours with advance preparation but I was on eggshells the entire time.  I decided to try a 30 day respite with May 1st as a permanent placement date.  Long story short, the kids ganged up on me and opened my eyes to just how much of myself I was sacrificing to keep him at home when, in actuality, he had left us long ago. He took up residence on Nov. 12 in a facility about 40 miles from our home that only serves Alz/dementia residents.  

He is more progressed than I realized when I see him with his other 15 cottage mates. He is well fed, clean and well cared for.  He is there and I am here, but I have my life back to some extent.  I placed him, perhaps selfishly, more for my own well being than for his.  I will not apologize.  I have no regrets, no woulda’, coulda’, shoulda’; I have loved him with my whole heart and soul since our college days, over 50 years ago. He would want me to go on living.  Wish I had some sage advice to offer, but that’s my story.  

Bill_2001

Hi Bill S,

This is an excellent post and thread,so I felt compelled to contribute. Your dear wife sounds like she is at about the same stage as my dear wife, so I hope my answers are helpful to you. See my responses below after each of your questions.

1. Her dementia behaviors try my patience 24/7, yet she is cheerful most of the time. Don’t I owe it to her to try to be more patient? After all, she has been my better half for 45 years and a huge part of our success in our life together. She has put up with me all this time, and of course there’s that “in sickness and in health” thing.  She will try your patience regularly due to her condition. I use stress-relief techniques such as deep breaths, waiting a few minutes to try something again, etc. Call a friend, play music, whatever it takes my friend.

2. I now have to do virtually everything from shopping to finances to cooking to scrubbing toilets, all while enduring her demented questions and interruptions without any of the intimate sharing we once had as equal partners. How do I know when I’m sacrificing too much of my own life for [sorry, I can’t think of any other way to say it given her prognosis] a lost cause. You are in charge now - everything falls on you. I am in the same boat, and it can be scary. We have a lot in common with single moms, who also do it all. I just had to accept that I am now the captain of the ship. And the "lost cause" part? I had to giggle - we are all lost causes. None of us will live forever; something will take us all out LOL.

3. We’ve lived in the same quiet, comfortable home for 45 years. It is familiar to her, even though she often asks to “go home.” Wouldn’t she feel lost in a strange environment? She would adjust to another environment faster that you will adjust to her being away. My wife spent two separate weeks away (respite once, then hospital later). It was much harder on me than on her.

4. Touring memory care facilities, it appears most of the residents are more “out of it” than my wife. At this time would she rebel and insist she did not belong there? Again, she would adjust faster than you will adjust to seeing her there.

5. On the other hand, living alone with me on our rural property, she is often bored and lonesome even though we have frequent visitors and activities. Might she be happier in a more stimulating environment? Yes. I know because my dear wife goes to daycare everyday while I work full time. She does very well there.

6. Some facilities offers “respite care” stays, where she could be placed for a few days at a time while I get an extended break. Would she accept this, and would it make for an easier eventual transition to full time placement?  This is an excellent idea. I have access to daily daycare, but if you do not, you may benefit from regular respite. She gets a change of environment, and you get a break. And if you feel 'guilty' about it, you will know she is coming home again.

7. In the past she has told me that when things get too hard I should place her somewhere rather than sacrifice my own health. Of course, that was her more lucid self talking. But should I choose one of her more lucid times and ask what she would think about transitioning into memory care, sort of seeking her input ahead of time while she can still give it? (We may be past that point already.) Probably not. You are the captain now, but I know you will do what is best for her too.

8. Would the guilt of placing her be as stressful for me as what I’m going through now? Yes. And don't underestimate the stress of the financial cost either. I am keeping my wife at home with me as long as I possibly can. I am the captain of my ship, and right now this system of daycare and my caring for her at home is working. No matter what you do, it will be hard. This disease is a heart-breaker no matter what you do.

9. Urinary incontinence has started along with ominous signs of worse to come. She went through a hostile period prior to antipsychotic meds but now I am her trusted friend. So what are my “lines in the sand” that will push me to place her? Do NOT skimp on incontinence products. Buy the good ones. MUCH cheaper than a nursing home! Incontinence is one of the main reasons for placement. (The others are lack of caregiver sleep and patient aggression.) Products can be confusing. There are pads, briefs (underwear), and diapers. Skip the pads. Briefs are wonderful, as they are put on like regular underwear. Diapers attach at the sides, and are more for use when the patient is stuck in bed. Good ones by Tena, Attends, NorthShore will make this chore MUCH more tolerable. Store brands like Walgreens, CVS, or Walmart are ok in a pinch. I discovered Tena for my wife and never looked back.

10. When the time comes, how do I explain where and why we are going? Just be honest and hope for the best? Only you will know what to say, and of course that depends on your dear wife's ability to comprehend what you are saying. My wife is well beyond that, and she is still here by my side.

I wish you the best.

Paris20

BillS, I think I am at the same stage with my husband that you’re facing with your wife. The observed symptoms, as well as my thoughts and worries, seem identical. I have help at home but DH won’t let anyone care for him except me. I’m trying to make it work at home because housework is done by others so I have eliminated many former responsibilities, but the rages and increasing incontinence, including a recent episode of the most dreaded kind, have me wondering what could change my mind about home care.

billS

Just want to say thank you to everyone for your great comments, and for sharing your experiences.

Joe C.

BillS, A month ago I could have written a very similar list of concerns/challenges/fears leading up to the placement of DW which took place 3 weeks ago today. My experience is that DW is acclimating to the MC better than I could ever had imagined. She is happy & engaged in activities and has new “friends”. She is clearly getting a level of social engagement that I was not capable of providing at home.

I on the other hand am struggling with the total elimination of the caregiver role that has been the focus of my universe for the last several years. I try to keep busy but some things I just find really difficult, such as being alone in the evenings or cooking dinner for one. I’m sure I will adjust in time but yes that transition has been much harder on me than it has been on her.

As for #10, I did not tell DW about the placement mainly because her short term memory is almost nonexistent. I decided that trying to explain would only upset her in the moment and then would be forgotten almost immediately. I arranged the drop off just before the start of a music activity, I had the staff take her into the activity room and I back out. When I go to see her the most she ask is, “where have you been?” to which I respond, “at work”. She accepts my response and does not bring it up again during our visit. When I’m leaving I just tell her I have to go back to work and she is OK with that explanation.

billS

Joe C. wrote:

BillS, A month ago I could have written a very similar list of concerns/challenges/fears leading up to the placement of DW which took place 3 weeks ago today. My experience is that DW is acclimating to the MC better than I could ever had imagined. She is happy & engaged in activities and has new “friends”. She is clearly getting a level of social engagement that I was not capable of providing at home.

I on the other hand am struggling with the told elimination of the caregiver role that has been the focus of my universe for the last several years. I try to keep busy but some things I just find really difficult, such as being alone in the evenings or cooking dinner for one. I’m sure I will adjust in time but yes that transition has been much harder on me than it has been on her.

As for #10, I did not tell DW about the placement mainly because her short term memory is almost nonexistent. I decided that trying to explain would only upset her in the moment and then would be forgotten almost immediately. I arranged the drop off just before the start of a music activity, I had the staff take her into the activity room and I back out. When I go to see her the most she ask is, “where have you been?” to which I respond, “at work”. She accepts my response and does not bring it up again during our visit. When I’m leaving I just tell her I have to go back to work and she is OK with that explanation.

Hey Joe, thank you so much. That is exactly the feedback I am looking for. We are not there yet. Whether it is 6 months or two years remains to be seen, but experiences like yours really help me understand what might be ahead. I wish you the very best with your DW.

Sunrise24

I just happened to see your post and you may already have them but I have nightlights that are motion activated that are extremely helpful.  My DH was placed in September and I bought four of these lights because I was nervous about his being in new surroundings.  As soon as his feet could touch floor from bed, the lights turned on.  I found them on Amazon and have them around the house.

Beachfan

Joe C.,

I am so glad to read that your DW is adjusting well to MC.  My biggest concern is/was that I waited too long; my DH is just “there” at this point.  In some ways it’s easier- - he doesn’t know where he is, he doesn’t seem to care, he doesn’t miss us, but the realization that he is so much more progressed than the other residents saddens me.  On the other hand, he absolutely hated the day program I tried 3 years ago, when he was more aware. (He only lasted 1 full day, 3 half days with much resistance.)  It’s a crapp shoot, I guess.  

I can empathize with your lonely evenings and cooking for one.  Evening was his pacing and chattering time, interrupting my reading or TV watching.  I don’t miss it, but I miss it.  I try to cook and eat sensibly, but I’ve had a few popcorn and tortilla chips and salsa nights.  DH, on the other hand, is eating healthy and well.  One day at a time.  It will all work out.  

Beachfan

Ed,

DH is in a MCF with private rooms, my preference.  He has “fallen” out of bed several times (I think he tries to get up and gets tangled in the sheets- - no bruises, no injuries).  Staff make hourly checks, 24/7, so they tend to him in a timely fashion.  I find that comforting, since, at home I was always right there to prevent falls.   

billS

Well this morning I am suddenly feeling placement just got much closer, after finding DW had a large bowel movement....in the bedroom wastebasket. A wicker one no less. If this becomes a regular thing it will really test my stamina.

June45

Yep, poop in a wicker wastebasket and not getting enough sleep would edge me to the tipping point of placement.  I know that our loved ones can't help it, but my goodness we are human with limitations also.

Ed1937

BillS, we had a somewhat similar event with a wicker clothes hamper. Cleaning those things is just impossible. That went in the garbage, a new plastic hamper replaced it, but we have not had another incident since. I'm keeping my fingers crossed for both of us.