Today was another plateau that was very difficult for both of us. I took DH to a longterm care home for a 7 day respite and it upset him at first but it broke my heart to leave him there. He looked so sad then he went to the coffee shop with our daughter and someone was playing the piano and he was singing with another man and people applauded them and he seemed to be better. I left just as he was going for lunch so I have no idea how he was after that. There were so many activities to go to he wondered how he would do them all. He said he would be very tired if he did. The residence if affiliated with a large University and so there are numerous music times and types and he loves music. They even have a Pub( coffee shop in the morning Pub in afternoon) at three so he was invited to go with a few other men for a glass of something. I sure hope this works out alright. I'm very tired and just need a break. He keeps telling me that it is me not him with the dementia and he is very sure of it. Sometimes I am wondering if he maybe partly right as caregiving takes it toll on us as well as them.
Sounds like he may find things to keep him busy and there are others that will ask him into their group to do things. From the way it started I would keep those thoughts, not how sad he looked. In the meantime us this time to rest and do things for YOU.
I just commented on Joan's new blog about awareness. This will be our first respite stay, also. I don't know if he didn't understand he is going, or if he just can't find the energy to object. He will be going to a Skilled Nursing unit. He really can't really do anything for himself except feed himself. I shower, shave and dress him. I even have to wipe his butt. The caretaker who came today couldn't believe the change in one week. Of course it might finally register when he gets there.
Jazzy and MaryinPA, I truly hope that the respite is good for you all. I believe our mates, despite not wanting too much change or fighting us on issues, somewhere inside they know that we are doing our best for them, and they know we have to have a break.
I remember when I had the first day of respite, a 10 hour day with an in home aide. As I had not had a moment for a couple of years, I was really looking forward to going to town and a little beach time.
It all seems so long ago, and it was only maybe...a year ago? I had the HARDEST time leaving that day, and no sooner did I pull out of our yard and the tears came flowing, I had to pull over and sob. It was just the surrealness of it all, the fact that my grown man had to have a "babysitter" When I got home later, so worried and scared he would be mad, it was all just fine.
Now he is just a little small man in a wheelchair, spoon fed, cannot do anything himself. I tell you this, so that you can not worry too much and look back and be proud of all you have done, and felt. I know I do.
Jazzy, I am convinced music hold magical powers. I am very glad they have so many activities for him! I hope it works out well for you both. As Charlotte said, try not to worry (too much) and get some much needed rest.
DH called me tonight and all is well. He ate his lunch after I left and then had his usual sleep. Then he went to a sing-a-long and he said he got everyone to clap along with the music. After that he went down to the Pub and had a ginger ale and again he got every one singing. He loves to sing. Now I have to remember that his perception is not good so I am never sure if what he tells me has really happened as he said or not. That is something I have to be very careful not to fly off and upset others when what he says really didn't happen. I was concerned also because he told me the nurse came in and gave him his 21:30 pills at 20:00 and told him to take them at his usual time. He left the pills on the night stand and went to call me. He has no sense of danger and just left the pill where another patient might see them and take them. I have to call tomorrow and make sure this doesn't happen again if it did. I just came home and did nothing. I just hope I can sleep peacefully and don't keep waking up to see if he is alright. Tomorrow is busy with a meeting with the social worker and then a luncheon with my support group and the painter comes at 08:00, no sleeping in.
Jazzy and MaryinPA - I hope you both can get some needed rest during this time. Not just sleep, although that too, but rest. Blessed, peaceful rest such as doing whatever you want at some given minute instead of either taking care of or worrying about your spouse. We all know logically that we can't keep doing this without taking care of ourselves too but sometimes its hard to make that happen. Good luck. Try to enjoy your time.
Well so much for a peaceful respite. He is not settling down. He calls me ever night and tells me what he has done that day. That is fine but I have found out that he has found out the stairways codes and even though he has been told not to use the stair as he has a balance problem and residents are not to use ,well he does. He has told me that they give him his Meds at 20:00 and that he is to take them at 21:30 on his own. Is this actually happening or is it perception again. I just don't know. He is the bell of the place and is taking over anywhere he can. This is the bv FTD and he just does what he wants no matter what he is told. He wants to run everything and can be very pushy. I deal with this everyday. So stressful if they can't handle him he will be sent home and will have to to a secure unit for respite next time.
Jazzy, first let me say I am sorry this respite is so stressful for you when it was supposed to be your sanctuary and "me time". Now let's deal with your DH's situation. You husband sounds like mine was when he was in an ALF on "respite" to determine if he could adjust and live there. Sounds like your hb is in late stage 4 or early stage 5 and if he has bvFTD the ALF will be challenged to give him adequate care for many reasons. Do they have experience with younger clients with FTD and not AD? Our experience was that DH was in the locked memory care unit but could figure out the lock combination, climb the fence which was only 10 ft high (BTW they had benches next to the fence so that he could climb the bench and only have to scale a 7' fence) could shadow a family member of another client and go out the door when they left.
The sad truth is that most ALF's are not equipped to deal with a healthy, mobile client with FTD, no matter what the age. I am sorry that I haven't researched your husbands age and situation before responding to this post but I truly felt it was important to respond now. When I research your post, I will amend my response if necessary. If there are other clients in the memory care unit, where are they in their dementia journey? The ALF my dh was in the clients in the dementia unit were mostly women, reasonably advanced in their dementia (stage 6 or beyond) and no one had FTD. The caregivers didn't know how and couldn't deal with my then 58 yo hb behaviors-quite frankly they were afraid of him because everyone else in the unit was marginally ambulatory or so debilitated they couldn't do anything for themselves They called me every night to come to the ALF (45 mins away) to give him his meds because he refused to take them. Certainly no respite for me. And they called anytime he did something they didn't know how to handle (standing naked in his doorway with an erection, going from clients room to room looking for his dog, etc.). what I found out is that if your spouse has bvFTD, very few if any ALF's have the experienced personnel to handle your loved one. Quite frankly I think it is serious neglect that they will leave his meds on a nightstand to take later. What if he doesn't take them and what if another resident takes them without anyone knowing?
I'm not trying to stress you out but I've learned the hard way with bvFTD most facilities cannot handle them until they are in end stage. ((((HUGS))))
This life of mine is all over the place. I went to see him about trying not to be a naughty fellow and had dinner with him and has informed me that I am to start the process for him to move in as soon as they have a room for him. He is in a care center that is about 1 hr away from our home and I am to sell the house and get an apartment near by. He is concerned that my health is being compromised and this scares him. He is so apply there that I just about cried. He said he just can't deal with mt being the boss after it was always his job and he wants and needs more activities and stimulation then he is getting at home or at the ADP. I was floored but do relieved as his caseworker is ready to place him as she is concerned about my health. So are the rest of his team or Dr,s. things ckange so fast. He has instructed me to make the arrangements with his care worker.
No it has been a roller coaster ride with for about 5 years, with highs and lows and happy and angry. If I had any idea that this could make him happy I would have suggested it a year or more ago, but he was totally against it before now. It was coming to the time when our health team were getting very concerned about my health. I guess we can maybe work together until he has a longterm bed. I feel so relieved. This place is great and he loves it. It also has a secure unit so if needed later then they can just move him there and hopefully it will be a smooth transition. He was very concerned that I might become jealous of his table art ears. Three ladies that tell him how ham some he is and what love.y hair he has. I told him I was not worried because I knew he loved only me and he was fine. So off I go to see how to do this for him.
Hugs back to you, Jazzy - you have been through a lot lately. I know that you are busy trying to get him placed, but try and get some rest for yourself too!
I took DH for his first respite this morning. They whisked him away to some activities immediately while I talked to the nurses and signed my life away. I didn't even go in to say goodbye. I didn't think I would get so emotional and certainly didn't think I would cry. I have been on a high just getting him ready and hoping he wouldn't throw a fit. He just looked lost as if he didn't know where he was or why. I kept telling him for the last few days that he was going there to visit while I go to NH ( New Hampshire) to see my brother who is ill. But I don't think any of it registered.
He is at a Friends Home in the Skilled Nursing unit. I liked it because it is a small unit with only 20 beds and he makes the 11th person there. The staff to patient ratio is almost 1 to1.
MaryinPA I so wish for an awesome respite for you! PLEASE try to do something great for yourself, and clean thoughts and stress out of you mind, and fill it with smiles and joy, even if briefly.
I called today and he seems to be settling in. At least he isn't saying he wants to go home. They discouraged me from visiting. So I will stay away this time.
DD and I went out dinner at a nice Japanese restaurant tonight. First time in a year or more. Enjoyed it very much.