Respite stay

French

In few days, my partner will spend 19 days in a memory care. I am not sure that I use the right word for you. It’s an institution where they only have people suffering from dementia. He will obviously be the youngest, and by many years.

For this decision I have been assisted by a psychologist who discussed with him and by the neuropsychologist who is working at the daycare where he is spending 2 days per week.

It was a difficult decision but he admitted that he is doing it for me because it has been very tiring to care of him these 3 last years, still working full time and having children at home. His conclusion has been « let’s try ». Last time, for Christmas  he spent 2 weeks to his mother and prefers to go to this memory care than to his mother.

I am grateful because he is always positive. The psychologists are sure that it will be fine. They are not sure concerning the institution I chooses but the one they recommended had no place before September. They think that I should already book another stay in this other institution for fall with the idea to try it also and perhaps let my partner there if he is fine there.

I have always been well advised by them and I really trust them. It’s their job, they know him and me too quite well. 

But I still feel guilty. 

He is still able to understand not too complicated ideas and to talk. He clearly expressed that he doesn’t want me to scarify my life for him. But I heard him repeating « what a pain the the a** » before we visited the memory care. 

His two sons ( 20 and 24 years old) and two brothers with whom I have good and regular contacts are informed and support this progressive approach.

But I am still wondering what to do about his parents.

Last summer I received an email from his father lecturing me. In short «  you have chosen to share your life with my son, He is the sick one and a sick person deserves respect ». I answered that I certainly don’t deserve such a lecture after 2 1/2 year of caregiving. No contact with me since this answer. He still calls his son every 2 months. As my partner’s still speak very well and is always positive, he certainly thinks that everything is fine.

His mother (parents divorced 25 years ago) welcomed him 2 weeks for Christmas. He didn’t want to go there but accepted because I asked him, to have a respite. He was just back home when she announced me she arranged everything so that my partner have a  foster family in February. I was very shocked and answered that it was too early and that my objective was to continue caring for him for the moment. And Also that her way of doing things was not thought out and I wanted any decision to be professionally supervised and made with my partner as much as he could. Her answer was : the family should be implied. My partner is still able to tell me (he has done it when his sons were there) he doesn’t want his family to be implied in decisions and he legally entitled me to decide for him. He is very upset at the idea that his parents or sister could be implied. He never trusted them. Her mother never called again since January. And I discovered that I am less stressed now. In fact, she was transferring a lot of her stress to me.

Trust is broken with them. So I wonder if I should inform them.

Con arguments :

-it’s our life, 

-it’s  only 19 days, I wouldn’t have informed them if it was holidays 

- they never call me now. so I  own them nothing

- they could harass either the children or me for informations... 

Pro : 

-They will inevitably know it  so I might as well tell them myself.

- I am sure they are preparing something against me, helped by my partner’s sister who never came to see her brother but knows better than everybody how to care of him. My partner SIL confirmed it. If I don’t tell them, I will be accused of retaining information.

When you think about it, I am lucky to have a partner who is easy to take care of, always kind and understanding, and to have a lot of help from professionals, Who have always accompanied us well. I have been spending a lot of energy for 3 years so that my partner has a life full of activity, social relationships, so that he is happy. It's a pity to get into knots in the head because of his parents who don't trust me. Why can't I leave them out of it? 

Crushed

"scarify"    make shallow incisions in (the skin), especially as a medical procedure or traditional cosmetic practice.

1. "she scarified the snakebite with a paring knife"
2. 3.

   criticize severely and hurtfully.

   "he scarified our leading politicians, seizing upon their vulnerable points"

Crushed

Sorry technical trouble. 

You are the caretaker...... you do as you think best

100% support form me

Joe C.

French, This is a tough decision on whether to tell his family. There are always people who think they know what’s  best but they have no idea what you are dealing with.

David J

French- I am sending my support for you, whether you tell them or not. It is a smart decision to get some respite and based on your description of his family dynamics, it is none of their business. I take it that you are not married to him but have legal authority to make decisions for him?  I don’t know French law, but while your partner can still make his wishes known I would solidify that legal position as much as possible. I see problems coming from his family as the dementia worsens. You his partner and his caretaker, and you know best. I am sending you my best wishes and support.

LadyTexan

Greetings French.

You are a wonderful caregiver. You know better than anyone what is best for your partner. Some of my thoughts:

• You mentioned in your post that the your partner's mother transfers stress to you. You do not need any more stress in your life. You have a lot going on. Because the mother is a source of stress, I would not engage with her regarding this.
• Your partner's father disengaged with you. As you mentioned, you owe him nothing. I would not engage with him regarding this.
• Yes, they will inevitably know but in the meantime you will have some peace. 
• Because your partner will be well cared for, consider what is best for YOU. 
• You are the captain of this ship, navigating rough and uncertain seas. You don't need distractions from whiney passengers (his parents).

Your decision of telling the parents or not is well thought out. I support you whatever you decide to do.

Blessings to you and your partner.

Ed1937

French, you are no dummy. You are doing a fine job of caretaking. And you are considering pros and cons. Like Lady said, "Because your partner will be well cared for, consider what is best for YOU." 

Crushed

LadyTexan wrote:

Greetings French.

You are a wonderful caregiver. You know better than anyone what is best for your partner. Some of my thoughts:

Agree 100%

French

Thank you for your support. You are right, I am the caregiver.

 I think I will take the short term option. I won’t tell them so that I am sure to enjoy this respite. We will see later how they will react.

And yes, all the legal things have been done. He gave me the POA but for the moment I still haven’t asked to the court. One year ago, we went to our notary and he expressed that  I Will be his POA. I have the document but i still haven’t put it in application. To do that, I have to go with him to a specific doctor to have an attestation that he is no more able to take decisions and then to go to the court and give it. It will just be registered and can be used. It isn’t very simple but can be done quickly.

I still haven’t done it because after, I will have to justify all the expenses to the notary (more work), and I also consider that he is still able to take a part of the decisions if well explained. For example, he really understood and agreed to go to the memory care.

But I agree that it also would secure me. It will be the next on my todo list.

French

Yes crushed , I know the meaning of scarify, my idea was sacrifice... not easy I have to struggle with English and the automatic correction that sometimes also replaces words by another... not always easy. I hope I progress !

I will have learnt vocabulary, not sure I will use it for my work, but it can still be useful

David J

French- Your English is way better than my French, that’s for sure. (6 years of French in school many, many years ago) Yes, there occasional wrong words, but your meaning is very clear. Your thought process as you make decisions for your partner is very clear and shows your competence and your caring nature. Please don’t be discouraged, you’re doing great!

French

Update. 

Yesterday was the day to go to the memory care.

 The evening before he was rummaging a lot. I let him go to bed without the pyjama routine. For once he got up late. He had slept with clothes. When I proposed him to stay longer above the shower because it would do him good, he answered it won’t.

We went. He expressed several times that he would prefer not to go. Then I explained that he does it for me because I have no other solution to have respite. He answered he knew that. There, everything went well. He was nice with everybody. I installed him in his room and left. It was heartbreaking and I feel so much guilt.

Today I had to go there and take him to the second vaccine shot. Yes, very bad timing, but I couldn’t change any of the dates. 

When we were out, the first thing he told me was «  I don’t like to be there », I try to know why, the answer «  it’s really sad ». I can understand him and I feel for him. Yes, it is really sad and he is too young to be here with people that are 20 years older than he his. 

He didn’t no difficulties to return, but how I feel bad. It’s only 15 days, but how I pay a high price for this respite. How could I do this. I think I'll be mad at myself for a long time 

M1

Don't be mad or sad either one, French.  You need this.  One of my partner's old friends took her to lunch today--I've had four hours to myself, and OMG have I gotten so much done.  Went to the shoe shop, mowed the lawn, cleaned the mower, cleaned the bushhog and the tractor, put them both up.  No questions, no need for pills, no need to make lunch.  If four hours can be this restorative, think what you can do with two weeks.  Use it and enjoy it.  It's perfectly okay.  Here they come right now.....

JoseyWales

I think you and I are in the same place. Younger husband, kids at home. I'm jealous of your 15 days. I think it will be wonderful for your children, too. 

But I get what you're saying about him being the youngest one there. I have no idea how it will go when DH will need to be placed in memory care. It breaks my heart to think of the age difference.

French

He called me at 7:30 this morning. I tried to discuss to change his mind, asking him how he was after the vaccine shot (I had a very bad night with headaches). Answer  « I don’t care about the vaccine ». Josey, you envy me, but I am still not sure I will have my respite. I begin to hesitate to let him longer there

Riz

Hi Everyone, I am new to this message board.  My DH has EO Alzheimers and is in the mid-stage.  I have planned a beach vacation and was wondering if anyone has any tips on flying with someone with dementia to make the whole experience a little easier.  I am considering buying the program with TSA where you can go to a shorter line through security. Any other ideas to make things go smoothly will be appreciated!  He grew up in Venezuela and loves the beach and I thought this would be a great experience for him.  I'm starting to have a few doubts and a little worried that with the hassles of traveling and new environment that he might not enjoy it as much as I had imagined.

French

Hi Riz, traveling was still possible for us the 2 last summers.

Summer 2019 (certainly stage 4) I had a conference in Berkeley, so I organized a 10 day trip in California with a van. At this moment I thought he was able to be let alone during my conference. I was wrong. The morning he was able to come back to the hotel but the afternoon, he got lost. He was able to secure himself in another hotel for the night, but I had a very bad night searching him with the police. The other part of the journey was ok because I was always with him.

Summer 2020 (stage 5) we went to La Reunion island. My mother and child come with us, and it was better for me. The main difficulty is airports. If you have to go to toilets, you need somebody with him. You also always need to check that he continues to carry his luggage... this time everything went well. We only thought we had lost him once on a beach but my daughter was following him with her eyes. 

He really appreciated these two journeys, perhaps the last ones. I printed the pictures I took and did a photo album for each of these journeys. He frequency flicks through.

Joe C.

Riz, Welcome but sorry you needed to seek out this community. I traveled quite a bit with DW in early and mid stage AD including multiple trip to Europe, the Caribbean, Canada, Florida and other US location.  What ended our solo travel was when DW could no longer use a restroom alone and started wandering if I was not paying attention to her. I say do it while you can and for as long as you can. 

One piece of advice I will offer for flying is there is a program called TSA Cares which I found very helpful navigating airports. You can contact the TSA prior to your departure and they will have a dedicated TSA agent meet you at security screening and walk both of you through screening ensuring that you do not get separated. Just google TSA Cares and you will find the info. Also try to anticipated challenges your spouse is currently having and think of ways to mitigate the issues. For example, when DW could still us the restroom alone but no longer remembered to wash her hands I would be waiting outside the restroom with wet wipes. Good luck!