When to take the next step

DorisEmma

My DH's physician (who is also my physician) has suggested that it is time for placement.  A friend who has worked for many years with senior citizens said that many of her clients say they wished they had placed their LOs 2 years earlier.  I read what some of you are doing to keep your LOs in the home and am amazed that what you are going through - sleepless nights, incontinence, and more.  I have LTC insurance I am using for home care -  about 24 hr/week now.  My DH refuses to change clothes at night, refuses to take a shower.  Both I can deal with for now.  One benefit is not as many clothes to wash ,  but I can tell by his clothing and the bathroom evidence that he is becoming less capable of cleaning himself and hitting the toilet.  He refuses to take his meds so I crush them, giving them unbeknownst to him in his food.  He wakes up each morning angry - yelling at me about how cold it is in the house - he wants me to turn on the heat when it is 78 in the house.  I get this occasionally during the day, not knowing exactly when.  Our daughter encourages me to set it at a temperature that I can tolerate so it stays at 76 - 78.  He has been examined by his physician and confirmed that he is not suffering from circulation that could make him cold.   It is his dementia.  He does not wander.  Now with medication he sleeps through the night and so do I. If we find a good program on TV or he is using his computer to read/listen again to news he has heard numerous times,  he is quiet, appears content.   I tell you all of this to show that he is not a difficult person to be with except for the yelling at me, the lack of my own social life, the additional care, and my own unhappiness.   We are in our home alone and the lack of a good conversation is very sad.  A caregiver said that eventually he will get through this angry stage.  My DH questions me why the caregivers are in our home.  I say we both need help since we are getting older.  I am 75, he is 80.  Even with the providers, I frequently do not participate in events with other people such as the garden club.   I just don't know when to make the decision to place him.  He will be very angry with me but if he settles in, he may become content with the numerous people around him for communication.  It is a very difficult time to be in when one considers the desires of one who has dementia verses my own needs to carry on with my life.   I guess I am just asking from you, when and what made you decide to take the step to place?

Hoot619

I think you answered your own question, you just had to write it down so you could see it.  Things are happening now and it is not going to get any better and the wait to get him placed could take a long time.  I'm going through that now. Hoot

ThisLife

DorisEmma, 

Other's will be along to share their decision process. Everyone varies in their ability to provide care and that's okay. 

You described my H and my life except we are a bit younger, and I don't have care providers coming in. I was working with the VA on adult daycare. However, its 3.5 hours of driving any time he goes, so that's out. 

I'm at the same decision point. I have LTC available for three years. It pays x dollars a month for three years whether I use it all, or not. Once it's started the months click by. 

I agree with Hoot619 about if we're asking, it's probably past time. I too think my husband will have more engagement in a setting with some activities. I'm in the process of visiting facilities. I'm hoping to have placement early next year.

I wish you the best, and I'm sorry you have to be here.

AnnMB

I would advise you start the process asap. It takes time (in Canada) to get your LO into LTC when you apply. I started the process and knew it could take up to 2 years though our area is about 6 months or a bit more. We also have the option to fast track but you are not guaranteed where your LO will go but they do stay on the waiting list and will be moved to a LTC of your choice.

We cared for DH at home and I got 12 hours of respite a week. DS and DDIL came to help settle DH when I couldn't. We were managing or thought we thought. DH had an episode where he became violent and we had to call 911. The RCMP had to take him down and transport him to the hospital where he is in acute care and is fast tracked to LTC. He is becoming more stable with adjustments to his medications. But, he will never come home.

We realize now we waited too long to place DH in LTC. But how does one know when you think you are coping. And DH's decline came rather sudden. A year ago he was quite independent. Christmas he was doing okay. The storms we had in January and February is when he started to get anxious and forgetful. From that point on he was declining but we didn't think it was that fast. The big thing is - we were too close to realize it. We had everything in place and it was only about 6 weeks ago that I did apply for LTC for him. I knew it was time but thought we had more time together at home.

I know you will have to make your own decision on what to do and I will be thinking of you.

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Joe C.

Doris Emma, I always assumed that DW would be angry & upset when I placed her but that did not turn out to be the case. DW always like having people around but during the last two years she was home it was mostly just her & I and I think placement gave her a new social group with which she could interact. I wish you the best as you try to make this decision.

DorisEmma

Thank you for your responses.  It was good to get the support and hear from others what you are enduring.  I have not looked at the message board for a few days.  We are in another state with with our daughter, SIL and the birth of our first grandchild.  We are staying in an AirBnB cottage, going daily to help them.  DH does not do much, if anything, but he does not cause any issues for us. I read your comments this morning after he yelled about wanting the heat on (temp is set at 78).  Now after breakfast with meds included, he is talking sweetly about going to see our grandson.  He enjoys watching him.  

I have down payments on 2 facilities in this area near our daughter.  She and I have concluded I will be here a lot and it will be good to have him near her and her family.  One had an opening in memory care this summer, but we did not take it, wanting to wait until after the birth.  His LTC is for 10 years and it was started earlier this year.   She and I have decided since we like both places, when we are ready, we will take the first one available.  

We will be returning to our home later this month.  Since there is so much going on here with the birth, I will wait until we return home to start the process for placement in January or February - assuming there is an opening - when I plan to have both of us back to the town where our daughter lives.  I want to avoid the winter in our state.   

I am not asking for answers but just your thoughts and where you are in the decision process.  I also just need to talk.  I have friends who listen to me, but other than one, none has experienced a spouse having dementia.  And that one's husband died several years ago. 

John1965

DorisEmma wrote:

 I guess I am just asking from you, when and what made you decide to take the step to place?

I’m going through this now. My DW was diagnosed 7.5 years ago at age 50.  I quit my job 6 years ago so that we could make the most of our time together while she was in the early stages of AD, and to provide care as the disease progressed.  When asked, I’ve told well meaning family and friends that I would place her when the time was right, but that I didn’t know what the triggers would be. I posited that it might be if she became combative or violent.  Or maybe when she became incontinent. Neither of these things has happened yet, but her pre-admission evaluation is scheduled for next week. 

She’s had a significant decline since April. She longs to be busy during all the time she’s awake, but doesn’t have the attention span or stamina (physical and/or mental) to stick with any activity for more than a few minutes. That, combined with hostility or hurt feelings at the mildest rebuke (e.g. “We have enough green tomatoes, can you leave a few to ripen on the vine?”) has led me to seek more help.  I’m pretty patient and skilled at re-direction, but have burned out. So, she’s bored and constantly anxious and I’m burning out fast. We’re both less happy than just a few months ago. I looked into daycare, but those programs are another casualty of the pandemic. I’ve toured a few good care facility options, and for the first time considered that she just may be happier with activities and routine that I can no longer provide. Friends, family (including her side and our two children), and the caregiver I’ve hired (12 hours/week) all agree that placement will be best for her and for me. So, the mechanics of placement are gearing up.  I hope I have the courage to see it through, because now that it’s looking real instead of abstract, doubt, guilt, and feelings of betrayal are sneaking into my thoughts. Sigh. I haven’t slept well for a long time.  

DorisEmma

John 1965 - early on I thought that something such as incontinence, wandering, physically combative would be the reason for me to place my DH in memory care.   Now since none of those reasons exist in the manner I expected,  I know there is more that exhausts a caregiver.  I also experience objections to suggestions I make, no matter how mild.  These were all things we could discuss in the past, now have become, according to him, me controlling his life.  "We have 3 containers of orange juice in the refrigerator.  I don't think we need another right now" is an insult to his ability to make a decision.  Fortunately, I was able to slip the 4th container to our daughter.  DH was very angry when we visited a daycare program and I, too, could see that he was different than the 4 -5 other people there.  Wouldn't it be so less stressful if we could foresee that event in the future that could convince us to take the step we need to take now before that event happens.  

Victoria 2020 - thank you for the resources.  I hope to find  time in the next few days to watch/read them.  

Elshack

In this dementia journey so much is similar yet so much is different in each case. My decision to place 92 yr old DH in memory care was decided after he broke his ankle in 2 places and was in the hospital and rehab for 2 and 1/2 weeks. They wouldn't take him in assisted living because he left our apartment unbeknownest to me and tried to get into our locked car. A neighbor called for help when he saw him fall. He is a gentle soul but I knew I had reached the end of my rope as he had explosive diarrhea due to Crohn's disease and was not eating well.

You have to make your own health a priority as others have said. I have only done this 24/7 care for 4 years and I knew my health ( mental and physical ) was suffering. So the broken ankle was a blessing in disguise. He didn't need surgery and has been in Memory Care for 3 weeks. I visit him everyday and we eat dinner together and actually played some cards today. He is eating 3 meals a day and the aides are wonderful. Thankfully he hasn't asked to come back to our apartment which is the next bldg to AL/ Memory Care.

Of course you have to make your own decision but as you know the situation only worsens and never gets better. Best to place now and he may or may not adjust but you don't want to end up getting very ill from caretaking. I am sending hugs your way and hoping you will at peace with your decision.

Beachfan

DorisEmma wrote:

 - early on I thought that something such as incontinence, wandering, physically combative would be the reason for me to place my DH in memory care.   Now since none of those reasons exist in the manner I expected,  I know there is more that exhausts a caregiver.  

Doris,

My DH was diagnosed MCI in May, 2010.  I cared for him at home until he was placed in November; by then, he didn’t know me or any family, did not know or care where he was or who cared for him.  His progression was slow but steady; I thought I could care for him at home forever.  When I placed him, he was not incontinent, not wandering, not physically combative.  He appeared to be an “easy” patient on the surface; in reality, I was spending every minute of every day preempting any situation out of the ordinary, at my own expense.  I had sacrificed my kids, grandkids, extended family, friends, any bit of social life I might have enjoyed in order to keep DH at home.  It might seem that I placed him more for my benefit than for his and I will own that.  He is content, clean, well cared for and clearly loved within his MCF;  I love him with all my heart, I miss what we once had, but, at 75, (your age), I am regaining my life again. Your decision is your decision.  Research, consult with family, follow your head (your heart will follow), stay strong and look out for yourself as well as your DH.  Best of luck; it is no easy task.  

DorisEmma

Dear Friends - I feel now I should call you "friends" since you have shared your decisions, concerns, and heartaches with me.  I thank you for your support.  In a few weeks DH and I will return to our home in another state.  Our daughter, SIL and new grandchild plan to come for Christmas.  I will spend the time between now and then getting ready to return in January for 2 months and setting up all the details of placing my DH in a memory care facility early next year.  Of course, the date depends upon an opening.  Since we are on 2 waiting lists,  I hope one will happen at or near that time period.  He is very unhappy here in our AirBnB.  He knows where we are and says he knows why we are here, but complains about the cold in our cottage (we are in a heat wave here in CA).   He will complain as usual about the cold no matter where we are.   Thank you for your support.  It is difficult.  We never want to make the person we love unhappy, but sometimes other needs take priority.