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    • CommentAuthormyrtle*
    • CommentTimeJan 29th 2018 edited
    bhv, I encourage you to reconsider the daycare option.

    I did not think my husband would like it, either, and I was right, but I sent him there anyway. It was for my sake, not his. It was a hard sell, but eventually, he got used to it and ended up looking forward to going, especially after I stopped driving him and the van started picking him up. (It gave him some independence from me.) It was good for both of us but especially for me, even though I never saw 6 hours fly by so fast. The VA paid for 3 days per week then, but I think they may only pay for 2 days now. I paid for 1 day per week on my own. Well worth it.
    • CommentAuthorCharlotte
    • CommentTimeJan 29th 2018
    The VA here still pays for the 3 days. I agree - never saw 6 hours go by so fast.
    bhv, thanks for the link to the alz site. This time I bookmarked it in case I need it in the future.

    Rodstar, my daughter and I used to make a game to see how many different answers (that made sense) we could give to those sessions of the same question 30 times. It got quite funny at times.
    • CommentAuthorbhv*
    • CommentTimeJan 29th 2018
    I went out to lunch and shopping with my friend and neighbor. Came home and everything was just fine. We didn't do much shopping. More sitting and chatting. We both kind of fell a bit in love with our waitress. She was an unexpected bonus for the day.

    I may take another daycare. Things keep changing so much. I put on a channel with things like Bonanza, Big Valley, the Rifleman. Last year these caused temoer tantrums for being so stupid. This year they are just wonderful.
    • CommentAuthorRodstar43*
    • CommentTimeJan 29th 2018
    you guys are fortunate to have vets.
    I am the vet. besides diability what could I do to get VA to help with wife? Not poor enough to get aid and atendance for me.
    • CommentAuthorbhv*
    • CommentTimeJan 30th 2018
    Rodstar check out this VA site. There may be something there. Also someone to call.

    You might also check with your local office on aging. You don't have to be poor for some of their services. See if your county has a PACE program. Not the one relating to energy upgrades. Some of that is based on income, but some not. Could be like VA where you have a co pay. Also have you looked at Tricare for Life? Could be some hospice or home care services there for your wife. Yes, I would look into home care even though you are in assisted living.

    • CommentAuthorbhv*
    • CommentTimeJan 30th 2018
    So after a nice afternoon with my friend, I cooked supper and it actually came out pretty good. Then played the Grammy Awards. Was surprised I was able to listen to more stuff than normal. A few years ago I fast forwarded through the whole show.

    Then bed time. Recently hb is just sitting there watching whatever I put on the tv. He used to go to bed early and I had a nice interlude of peace. No longer. If he goes up before I want to sometimes he tears the whole bedroom apart. It is like he is searching under the sheets trying to find me. And I don't want to be there.

    Also recently he doesn't seem to remember which side of the bed he sleeps on. I open up the bed for him and he remakes it. I open it again. He takes the pillows off the bed and puts them on the other side of the room. He finally gets in and I give him the pillow. Now he is in the middle of the bed and no room for me. I try to get him to move a bit. WOOOOSH. NOW THERE IS A WHIRLING DERVISH throwng things around the room cursing, screaming..... I grabbed my pillow and locked myself in my safe room. After it quieted I did go back and turn out his light. (He can't seem to figure that out any more.) I was surprised he never tried the door. I had a nice quiet sleep. No nightmares. First time no nightmares in months. Isn't that weird?

    Patty and I have exchanged house keys and emergency contact information. She has an unused Granny Flat and her sewing room is up there. We are going to have some sewing play dates soon. And she is getting me a gate opener in case I ever decided it wasn't safe to stay here I have a place to go to no matter what time of day or night. Her husband is a sweetheart and worries about me so he likes the idea too. In fact he found the gate opener on ebay for me. He has health issues now and that's another reason for me to have access as backup. I am 11 years younger and I am tall and strong enough to help get him up if he were to fall.
    • CommentAuthorlindyloo*
    • CommentTimeJan 30th 2018
    Bhv, regarding daycare. I don't think that either my mother or my partner ever "liked" daycare. My mother used to sit in the lobby of the daycare with a sign that said "I have a perfectly good home. I am being held here against my will." Everyone who came or left the building had to walk past her. My partner chose to go for my sake, gentle spirit that she was. But at the point that they began attending the day program, it was because of me. I couldn't do the care without the help of daycare. So there was no choice or option. And, I believe, daily routine made it easier. Even sitting in the lobby with her sign became part of my mother's routine. Never knew what my partner thought of going. She could not remember enough to tell me. I do know that at one time the daycare wanted to cut my partner's hours because of behaviors. I was able to convince them not to.

    Glad you have established a safety network for yourself. I always believed that though my family members were on a downward spiral, I was not going to be destroyed myself. My survival was paramount. And truly not just so I could continue to care for them. I wanted to survive for my own sake and would do what I had to to make that happen.
    • CommentAuthormyrtle*
    • CommentTimeJan 30th 2018 edited
    Lindylou, Your mother must have been quite a woman!

    At the risk of being pelted with rotten eggs for repeating this, I'll share my one overarching piece of dementia caregiver advice again:

    • "If you don't take control of the situation, it will take control of you."

    My outlook is somewhat different from that of others. IMO, having a strategy to control the situation is a matter of family survival, not simply "taking care of yourself." And survival does not just mean not getting killed by our spouse; it means both we and our spouses living a somewhat orderly (even if miserable) life and being able to include a few things that we want to do.

    Management-by-crisis is not a good option for those in survival mode, and a day out with a friend or a few days of good behavior by an otherwise rowdy spouse do not constitute a plan. We need a long-term plan that is based on realistic options. It's best if the plan includes a service that is offered on a regular basis and that we can count on. Those of us who live in the USA (which has a national Alzheimer’s policy that would best be called: "You're on Your Own"), have to figure this out by ourselves. If we can't afford to pay for private care, then we need to look at whatever benefits are available to us, whether PACE, VA, other family members, church groups, or whatever. Sometimes that means accepting a form of help, e.g., an aide instead of daycare, or vice-versa, that would not be our first choice.
    • CommentAuthorRodstar43*
    • CommentTimeJan 30th 2018 edited
    bhv, and all, thanks for sharing. I have been using Tricare for Life since we were 65. Guess I will call them to see what is available in my situation,
    besides just being supplemental ins.
    What is PACE?
    Tried getting hospice iinvolvoled. As far as AD, DA to functional. As to cancer no death date. I have refused surgery and chemo.

    Something is changing with DW. Memory worse. She is now having probem with crocheting with a simple loom and her long time ability to play with her simple game poker toy is slipping.
    What is next.. I also think I see new cancer spots. wonder what I can't see?

    One daughter flying in Saturday for a week.
    Maybe I can start my taxes
    • CommentAuthorlindyloo*
    • CommentTimeJan 31st 2018

    PACE is a USA federally funded all-inclusive care program that also taps into your state's medicaid program. Its goal is to keep people at home rather than in a nursing homes through their illness and death. This was our goal for my partner and me and I was pretty sure I would be able to carry it off because I was youngish, she was smallish and gentle, and I had both the life experience and skills needed. So she became a PACE participant.

    Benefits: All assets can be reassigned to family members with no six year look back period as in traditional state medicaid. Everything is included at no expense - except if in the end partner needs a skilled nursing facility - then the spouse’s income does go to the “snf” . Daycare, home care services, transportation, doctors and rehab and meds and family support systems are all included. During my partner’s time in the program which was two years, I got three weeklong respite periods.

    Issues: Like all options facing us it has its own issues. It is not available nationwide - it is available only in certain localities. You do not have a total say in when/if your spouse or family member can move into a skilled nursing facility - the PACE people have the say in that. You have to use their doctor. (My partner was allowed to keep her neurologist.) You do remain the primary caregiver which as you know gets increasingly difficult. If you decide to withdraw your spouse from the PACE program, the six year look back for state medicaid kicks back in.

    My involvement with PACE began with my caring for my mother. And several years after her death it started again with my caring for my partner. All in all it worked for me. And it is worth considering among other options if it is available in your area. That being said, taking care of my partner at home, even with PACE, was the hardest thing I have ever had to do.