I've had a few real eye openers. Things I never heard of being part of dementia. Things that to see happening just break my heart. Since Kevan moved to the new floor we have been going crazy with the staff and him having major issues. He has been fighting, verbally, with all if them. He threatens to report them to the director which has caused them to be very afraid for their jobs. This causes them to deal with him as little as possible. We were stumped by the fact that he could remember all the names of other staff members but not the PSW's. He so often says that they are the lowest levels of society and it's the only job they can get. He calls me and tells me all the bad things they are doing and I finally had a meeting with the director of care and the assistant director if care. They had gone to the floor at both shifts and questioned the staff and this is how we found out about their fears. He has often told me how the dietary AIDS really like and treat him special. They don't think he is special but are afraid. I had a long talk with him yesterday and really told him the truth. He was very contrite and says he can't stop himself when he gets upset about something. He says he will really try. We all know he can't do anything about how this disease affects him but he is aware for now. All of these upsets are happening after five so we think he is sundowning. He had asked to have his Ativan changed from 17:00 hrs to 21:00 hrs. I stopped that and now he gets it before he goes into the dining room at 17:00 hrs. His Meds have not been changed adjusted in five years so I have asked for that to be done as well. I'm tired, sad and just at a loss. I have found a new support group that is for caregivers with family member in care. I am working closely with the directors so things may settle down. I have asked them to let the staff know they don't need to worry about their jobs so hopefully that will help. What a crazy disease this is.
This has got to be so difficult for everyone, but you are managing it beautifully. Keeping in touch with the staff and having the ongoing communication has got to be go beneficial for everyone - they know you understand Kevan's actions, and that surely will give them patience and understanding that he can't control his actions. Kevan is very lucky to have you in his corner. God bless.
That he gives valentines to the ladies shows that he was a sensitive man and caring man ... it shows, to me, that he is trying so hard to cope with the confusion he is feeling, and trying to do the right thing - you are doing an awesome job! Hang in, and hugs right back to you. Margaret
you are doing your best and then some. Many would not go as far as you in keeping in touch with staff and the director. Many would just let it go or demand change where you are working with both sides to come to a solution that works for all.
Yes Jazzy, the staff and Kevan are all lucky to have you and your excellent communication and (for want of a better word) case coordination skills. And I wouldn't feel hurt about him celebrating Valentine's Day in the facility when he didn't do it in the old days at home. It is just the disease...I'm sure he would not mean any slight toward you. When I read your original post up above I couldn't help thinking that it is pretty clear the disease is progressing--I can see the changes since I first used to read your posts about you and Kevan. You are doing a great job, Jazzy--agree with Charlotte that many would not do or could not do the things that you handle so well.
He doesn't want to get up in the morning until around ten, so I spoke to the nurse and she said " no no he walks to much to do that. He needs the food to keep up his energy". He decided to get up, eat then go back to bed. Good decision as when he went for dinner he refused extra veg as he usually eats more and the dietary aid said " no,no. You walk way to much to not eat your extra veggies". He was floored that they were so firm about this, and both of them. He is now not getting his meals before anyone else and I guess my talk with the directors of care must have assured them. They are now taking control as it should be. He was trying to run that place like he did the military units he was in charge of years ago. We don't tell him ahead of time when we are going to visit as he stresses so much while waiting. So I will drop in this morning for coffee. He tells me that if he knows someone is coming then he worries about what he will talk to them about etc. The evening behaviour is sundowning and they are trying the Ativan at 16:30 so it gets into his system before he goes into the dining room. They are also looking at getting the geriatric phyc team in to test him and help with any changes. They have also started stressing to the staff that it's the disease and they need to learn how to help him not avoid him. I guess I should have had this conversation earlier to avoid all this upset for them, me and Kevan. We learn, we learn, we learn!!
Jazzy, you are an excellent caregiver and advocate for Kevan, as well as a loving and supportive wife. He is lucky to have you and the facility should appreciate your love,compassion, kindness and willingness to work with them. We're embarking on 9 years into this journey and I am still surprised by my husband's behaviors (both good/bad). I am always amazed at how functional Kevan is even after at least 3 years from dx. My husband also has a dx of FTD at 58 and since his dx was NEVER as functional as Kevan. I guess it's a blessing (or curse) but I am always amazed that he can communicate so well. You're doing a great job, keep it up. (((HUGS))) to you both.
Yes he is quite functional and that is the BIG problem for staff and for me. We have found out that is if I put my foot down and deal with him as a five year old he really settles down and behaves ( for awhile ). He tells us that he just can't stop himself when he looses it. The staff are being educated on ftd, ( finally ). I don't think they have ever had one on that floor. He loves his new room because the sun never comes around into it as it is tucked into a corner and thus is better for his eye problems. All these changes are not only helping the staff but me as well. We notice lots of other changes mostly in muscular but also memory. He goes to physio three times a week for balance exercises and stiffness in the upper body. They now have to go and find him as he forgets to go and he is always walking or at most activities. He has decided that it is best for him not to come to my home but to just go out to MacDonald's for coffee. This is working fine for him but I miss his company at my home. I need to try to let that go. It's so hard as he is so high functioning in some ways but not in others and so many things upset his mental state. I really miss him as he was and am finding it very hard. Someone told me that if he wasn't so high functioning that it would be easier for me to move forward on my own but I have read a number of your threads that tell me different. It just hurts.
Problem Jazzy is that for some it is easier when they are lower functioning, but for others it is not. Would be so nice if it were the same for us all but like with dementia - if you have seen one, you have seen one. (I eliminated Alzheimer's because I think it applies to all types of dementia.
Your doing a great job. I know it is so painful for you especially when you go home, but you deserve some peace with the situation and pray you get it.
As I have said before, in somethings he is as he was two years ago, but in others he is not doing well. He very tired and sleeps a lot. The sundowning is new and he swears he is awake from 02:00 to 05:00 or later, but the staff are now checking him every 1/2 hour and he is sleeping soundly.
So not quite 80. He seems to be in such an in-between place, which must keep you on edge all the time, Jazzy. Never quite sure how he will be or what he will do. You are really an inspiration, the way you handle him and the staff.
Well it's been one week and two days with no desperate calls and no bad behaviour. Just great. I should have stoped pussy-footing around him sometime ago and just laid down the law. I wonder if he has been enjoying pulling my chain or not? I have had a great, peaceful week and a half. Now I just need to wait for the next shoe to fall. I was finally able to start exercise classes this morning. I'll bet I will be some stiff and sore tomorrow!!