New routine

Just Bill

Well the upside of the final stage of FTD dementia is the routine went from herding elephants type effort to herding mice type effort. The routine is she wakes up naturally about 7 ish. I give her her crushed meds in about 2 tablespoons of ice cream. She still gets noticeably excited when I say "ice cream". Then I give her a tube of baby food followed by about a half glass of water. She will sleep until about 4 ish when I repeat the morning process. I change her diaper an hour after she eats in the morning and then again right before I go to bed at night. That's it. That's the routine so far. The 20 minutes or so she is awake I can get eye contact and some one word answers to my questions. After I feed her I give her a little massage on all her big muscles to keep the blood flowing. This morning she said "thanks". I have to say the feelings of compassion I feel help counteract the grief. This final process of taking care of her is giving me closure. Usually late at night is when the grief will start. When it hits home when she dies I will never see her again. At first I just wanted to get on with it. Now if she wants to hang back a bit and take her time I am ok with it. Taking care of her this intimately is helping me transition through this process a little easier.

Ed1937

I'm sorry this is so hard. It's a part of life we all have to deal with, as difficult as it is. I hope you can find some peace.

Katielu

Just Bill,

You wrote that beautifully. I am in the early part of this ugly disease. He is still together about so many things, in a 20 minute conversation with a friend, you might not know anything is wrong, but it is so difficult that I often wish it would just get on with it.

You have reminded me to appreciate what time we have. Thank you, and as always, I’m sorry you have to do this.

terei

Bill, by your description, I hope you have gotten hospice on board.

Jgirl57

Definitely a change in routine. There was no way either if you could have continued on the way it was. Sorry this is happening but glad both of you are getting some rest.

Just Bill

Yes Terei hospice started Thursday last week. It took a few days to develop a routine. There is no way I could give her the same level of comfort on my own. The support hospice provides is amazing, but you are still on watch 24/7.

jfkoc

Thank you for keeping us in the loop...

ButterflyWings

Thank you for sharing this and also thank goodness hospice is on board. They in many ways are like the cavalry that we know does not come otherwise, and to your point, they are not 24/7.

Bill, you are just so deep. I am really touched by the perfect description of how I feel as a late stage home hospice primary caregiver. I definitely did not see any of this coming but it this is our reality and I too feel that being his right (and left) hands at this point is helping prepare me for Stage 8. I agree with you. It is like a little bit of anticipatory closure to go along with the anticipatory grief, I guess.

Battlebuddy

That is where we were at when I posted about “The Good, the Bad and the Ugly of Stage 7” I posted that in middle of July. The 20 minutes of awake becomes 15 , then 10 , and then she might fall asleep as you’re feeding her.

I agree with you that this stage does prepare you for Stage 8. She will begin to turn inward, and it’s all part of saying goodbye.

Then things can move pretty fast, or like I said she can just move into sleeping round the clock. Hospice will advise you on what to do. And it’s ok to make decisions about what your wife would want. I hope she has an advanced directive because that really helps when you get to this point.

Thinking about you and praying for strength.

Jo C.

You are a wonderful carer as well as a loving and caring "guide" for your beloved wife as she moves gently toward her leaving.

Do keep us Posted; we are thinking of the two of you. I hope Hospice is working out well and bringing you some much needed support.

J.