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    • CommentAuthorCharlotte
    • CommentTimeJul 1st 2019 edited
    We are finally going to get hot - in the 90s closing in on 100s. I know many parts of the country have been hot, had rain and flooding, etc. I hope all are safe.

    Have not seen hb since Thursday - will go today. I miss seeing him but it is hard on us both when I leave. Will be back to update after visit.

    update: Had a good visit. His new glasses have been missing and they have not found them but I did find the end of the bow that he broke off, so he either threw them away or they are hidden somewhere probably in someone else room. After about 3 hours told him it was time for Jas and I to leave. Was mad he couldn't go with me. That is why I don't like going.

    Put ribs with BBQ sauce mixture in the crock pot this morning. Walked in to that smell when I got home!
    • CommentAuthorJan K
    • CommentTimeJul 2nd 2019
    Last night I had one of those rare times when I stayed up late and watched stupid youtube videos as an escape from caregiving. When I do something like that, for a little while I can forget the situation and just feel like a normal human being. I was looking forward to having some silly things to share with DH this morning.

    DH had other ideas. While we were eating breakfast, he told me that he had something very important that he needed to talk to me about. He was very serious about it. Then he proceeded to detail all the ways he thought I was failing in our relationship and in life.

    I am into my 17th year of caregiving, and have tried very hard to be patient and kind and loving and keep him at home as long as possible, and every sacrifice and lonely moment, every time I swallowed my words instead of screaming them at him, every time I needed to be resting but got up to do something for him or take him somewhere--every moment of that flashed before my eyes. I think the British have a word for how I felt at that moment: gutted. Absolutely gutted.

    I know that we are told that when our spouses do something mean or hurtful, it's the disease and not them. What makes this morning so incredibly more painful is that while DH was talking to me, I could see that he was pretty much firing on all cylinders. He was very articulate, and it was obvious that he had given all this a great deal of thought. (This from someone who lately has had trouble coming up with a complete sentence that makes sense.) It was soon afterward that the dementia man reappeared. While my eyes were still wet with tears, DH asked me if there was something wrong. Had something happened?

    I hate this disease.
    • CommentAuthorbhv*
    • CommentTimeJul 2nd 2019
    Jan, those kind of days are so devastating. My hub would periodically rant and rave that “We got nothing!” And tell me he was going to get a bed and move into the other room. Other days when he’d be physically aggressive and I’d leave the house. When I came back he’d be all worried that he didn’t know where I was. I’m like you were threatening to kill me, why would I stay around? He’d say he didn’t do that, he’d never do that, that’s not right, he’d never do it again... I always wished I could get over it as quickly as he did.
    For a few months I’ve been remembering only the fairytale part of our marriage and still can’t figure out how he could be dead. Now, as his birthday approaches, I have images of both of him in my head - like side by side. Fairytale husband and Alzheimer’s husband. I couldn’t imagine ever saying this, but sometimes I even miss the one with Alz.
    • CommentAuthorCarolVT
    • CommentTimeJul 3rd 2019
    Deepest sympathy, Jan K. The brain is so weird.
    • CommentAuthorCharlotte
    • CommentTimeJul 4th 2019
    Anyone remember the song of the 60s titles Sukiyaki? Never knew the lyrics but thought it was about sadness. Here is the translation

    I look up when I walk so the tears won't fall
    Remembering those happy spring days
    But tonight I'm all alone

    I look up when I walk, counting the stars with tearful eyes
    Remembering those happy summer days
    But tonight I'm all alone

    Happiness lies beyond the clouds
    Happiness lies above the sky

    I look up when I walk so the tears won't fall
    Though my heart is filled with sorrow
    For tonight I'm all alone


    Remembering those happy autumn days
    But tonight I'm all alone

    Sadness hides in the shadow of the stars
    Sadness lurks in the shadow of the moon

    I look up when I walk so the tears won't fall
    Though my heart is filled with sorrow
    For tonight I'm all alone
    • CommentAuthoraaa
    • CommentTimeJul 5th 2019 edited
    We have enjoyed this visit from our youngest son and his wife but neither of us have felt up to running around. But has been enjoyable just seeing them again and had a wonderful celebration yesterday.

    Our new trial is that dh has forgotten how to get gas. Can't remember which card is the gas card, nor how to insert it as well as not able to get the nozzle in enough to start the gas flowing. One more thing I have to take over. I can't remember the last time I had to pump my own gas, in fact I had dh show me what to do about a month ago, since he doesn't drive the car. He is progressing faster now.
    • CommentAuthorWolf
    • CommentTimeJul 6th 2019
    Hang in there ladies. Here's a moment of respite spent with bruiser bear:
    • CommentAuthorCharlotte
    • CommentTimeJul 6th 2019 edited
    oakridge - glad the visit went well. Sounds like June/July will hold some good memories.

    Cute video Wolf.

    Went to visit him on the 4th. Waited until around 6. Took him out to DQ then went walking along the river. When we arrived back at the facility he asked why we were there. I told him because this is where you live. He got a puzzled look on his face. Went inside, told him he had to stay there. Got mad and went to his room so I took off. It makes it easier to leave when he does this but also makes me sad. I usually go out back and watch fireworks. Can see the commercial ones in two of the cities plus all the individual ones but didn't this year. It was easier staying inside. I could still hear them going off in the housing across the road from us. Thankfully they are not allowed in the park.

    later: Just picked up my mail. Eagle Springs where Art use to be says I still owe them money. I think they are trying to get me to pay for February. I have the document from Medicaid saying I didn't owe anything for that month. I will call Monday to see what they are trying to get money from me for.
    • CommentAuthorCharlotte
    • CommentTimeJul 8th 2019 edited
    Visited him today. While there they asked if I could get him into the shower which I did even though he didn't want to. He has gotten so thin. He weight close to what he did most of his adult life but he hasn't the muscles he had so looks thinner. If she is the one usually doing showers I can see why he doesn't want to - she rushes through it. Joe will give him the stuff and let him wash himself. Took her about a minute to soap him up except around his privates - wanted him to do it. As fast as she asked him to do it he didn't have time to follow so I grabbed the wash cloth and did it. She rinsed him but he still had soap on him so took the shower from her making sure his armpits and privates were rinsed well. Wednesday Paula and I will take his chair in so he will have it to sit in while in his room. Today his roommate was sleeping on Art's bed - Jas kept running in and jumping on him. Teach him to sleep on the wrong bed!!!!

    Found out while I have not seen his roommates wife. She has only visited once since placing him there 3+ weeks ago. She calls but doesn't visit.

    Called Eagle Springs - was told to disregard the statement as their system was sending them out to people in error - even people who had died. Wow, that would be horrible to receive a bill when your loved one died month ago.
    • CommentAuthorbhv*
    • CommentTimeJul 10th 2019
    I went out on the 3rd of July to patriotic concert at the cemetery. It was really beautiful. Met an Army VietNam vet and had nice conversation with him. Could have found a friend to ga with, but am feeling more comfortable trying some things by myself.
    Today, 10 July, is his birthday. I played a one person golf tournament with balls he had marked. I thought I’d be a basket case, but was happy and played relatively well. I’m going to make his favorite angel food cake. A friend wanted me to go to lunch but I don’t want to share this day with people. Interesting that I heard from both of his sons. They never sent a card when he was alive.... They seem to want to stay connected with me. I don’t know what to make of that, but am playing it by ear.
    • CommentTimeJul 11th 2019 edited
    I appreciate everyone's posts and so am adding my two bits worth. although it is trivia.
    Life continues to improve since surgery.
    I get out to lunch 3-4 times a week at the Senior’s Centre at the local community centre: wonderful, friendly, interesting people, good food (yesterday we had lemon pie for dessert), library, swimming pool, exercise room, flowers.
    A daily walk, always a good book on the go (right now, it’s James Herriot’s Cat Stories, lent to me by a friend at the Community Centre).
    Deep thoughts? Not many at the moment. Just enjoying the summer.
    • CommentAuthorWolf
    • CommentTimeJul 11th 2019
    That's excellent Mary.
    • CommentAuthorCharlotte
    • CommentTimeJul 11th 2019
    Great to hear Mary.
    Thank goodness--good to hear from you and with good news!
    • CommentAuthorbhv*
    • CommentTimeJul 12th 2019
    Oh Mary that’s such good news!
    I’m doing line dancing at a local senior center with a friend. Just a beginner but this is a fun way to work out.
    • CommentAuthoraaa
    • CommentTimeJul 17th 2019
    Long talk with doctor yesterday. His progression (regression?) is typical of this form of dementia, may continue to progress faster now. Thinks I should be thinking of memory placement sooner rather than later. I know part of her concern is for my own health. We'll see her on Monday, but as of now - unless he changes in some way I can't handle I'm still leaning towards in-home care. I can have someone a few hours a day or a few days a week and we do have room for a live-in caregiver if necessary and I'd think it would be some cheaper and possibly easier for me.

    She also made sure we have all our DPAs in order as he soon might not be able to comprehend them or be able to give informed consent. He still doesn't like it - I think he feels it's the last straw in giving up all control of his life. Fortunately there is no need to talk about it often. I might be fooling myself but I still want him to feel as much like himself as he can - for as long as he can. Right now he is using the weed eater along the fence. It might be dangerous but so is getting up in the morning. I think being outside and feeling useful is better for him than letting him think he's useless and a stone around my neck. He often says I'd be much better off without him. The sunshine and fresh air is good for him and it definitely improves his mood for the rest of the day as well as giving him a sense of accomplishment.

    We'll both have lab work on Monday when we see the doctor and will see any changes. I feel fortunate we have a doctor who takes a real interest in us as people as well as patients.
    • CommentAuthorCharlotte
    • CommentTimeJul 17th 2019
    As long as he is not a flight risk, then go for the in-home care. Start looking at that route, maybe start bringing someone in for a few hours a week increasing to a few hours a day, then maybe fulltime. You will probably have to have them come in under the premise that they will help with the housework while you do the yard work.
    • CommentAuthorCharlotte
    • CommentTimeJul 17th 2019
    If you were in assisted living women, would you like this:

    I love it.
    • CommentAuthorxox
    • CommentTimeJul 18th 2019
    That article reminds me when a retired professional football player was doing an internship as my wife's facility (he was getting his degree to work in dementia care). Most of the women oohed and ached over him. My wife would just stare at him and she doesn't like football. Women residents who were mostly apathetic would do all sorts of things to get his attention. Lots of eye batting. That's all I have to say on this matter.

    As to the DPA, remind him this is for the future. As long as he is legally competent it has no effect. You can you a non-dementia example when you would need it.

    Decisions about placement/residency are yours alone. Every case is different and you make the decision. Just some observations from others:
    1) It is easier to adjust to the change (for the resident) when done earlier
    2) I know people who insisted on keeping someone home and they had suffered severe physical issues as a result
    3) People have taken their LO back home as progression make care easier
    4) Some residents do better due to routine of the facility
    5) There are plenty of horror stories. Finding the right place is important.

    If you have the ability to bring in help (such as having a room for a live in aide) that is a plus. If you don't need round the clock help (that's 3 people at 8 hours each) you should be able to keep the costs down.

    Other considerations are whether children live at home, whether you work out of the house, are you caring for anyone else.

    The key to deciding on placement are your needs and capabilities, not any arbitrary stage.
    • CommentAuthoraaa
    • CommentTimeJul 18th 2019
    This may be old news to you but I just read it in AARP. In fact, think I remember some of you talking about it, but VA will pay all or part of in-home health aide and adult day care.

    Thanks Charlotte and Paul, it's just the two of us here and as you say, while things are changing in some ways it gets easier. I'm anxious to meet with the dr on Monday face to face. Dh could wander a lot without leaving our own property, everything is fenced and cross fenced. Now he is the opposite, prefers to just be here and go no place period. I do know things can change day to day. Right now the Dr is more concerned about my health - while I'm generally healthy - I may have to have another surgery on my spine to release pressure on the nerves. I think this one would be less invasive so maybe a shorter recovery period. Dh had to take care of everything when I had the first surgery but this time around we would probably have to have some type of in-home help.

    So hot and humid this week, highest temps of the year with no rain in sight. Had to get out early to water and take care of the garden. Tomorrow I need to get out early and take care of the horses, the flies are terrible and they will not leave their masks on, so got some new med for them. Have chairs set around the yard in areas of shade so I can just sit and rest a bit when needed and am back in before the afternoon heat get so bad. Maybe I'm getting smarter as I get older, LOL.
    • CommentAuthorCharlotte
    • CommentTimeJul 18th 2019
    AT first Aging and Long Term Care paid his day care, then when he enrolled in the Geriatric Evaluation at the VA they paid for 3 days, ALTC paid 2 days. I didn't have in-home care until I was between placements. To keep him enrolled in Medicaid Long Term Care I had to do so many hours a month. Some was for weekly bathing, 4 hours was for someone to stay with him once a month when I went to support group.

    Went to visit today and they had not put a chair back for him to sit in outside. I spoke with the nurse when she came in about that. She said she would talk to the maintenance guy about maybe chaining one down so the young guy can't move it to the fence and try to climb over it. Hb smelled too - underwear had poop in them that had soaked through his jeans. I figured it out as I was getting ready to leave for support group - ended up helping to get him into the shower and cleaned up instead. Clipped his toenails too - they can't, only the foot doctor but gave me the clippers to do it. So when I left he was finally out of the clothes he has been wearing the last two+ weeks (changed underwear but not outer clothes) and into all clean clothes and shaven.

    Fine I didn't go anyway to the meeting. My car has been acting up. The MAF sensory that has been acting up. 2 years ago they cleaned it but a few weeks ago I noticed it started missing. Now it is shutting the gas engine off for a few seconds. Take it in tomorrow to get it replaced. I am trying a local repair shop vs Toyota cause it is closer and Toyota never got back to me with a price. This shop is suppose to have a lot of experience with hybrids - helps that there are a lot more on the road now.
    • CommentAuthorCharlotte
    • CommentTimeJul 24th 2019
    Monday his roommate, his wife, hb and I went out to get the guys haircuts and lunch. Had a great time but evidently it was too 'stimulating' for his roommate, so no more of going out together. :-( Found out she doesn't go visit because she doesn't know how to leave since he wants to go. His roommate wears a catheter, when we got back noticed it was leaking. While they were trying to get him to take his pants off to check it, I told her this was a good time to leave. Hb saw me leaving - told him I was walking her to her car and would be right back. I told her you need to learn to tell fiblets or have someone distract them and not feel guilty. She would like to get together just the two of us.

    They still have not put a chair outside for him despite the talk 5 days ago. I am not happy about that.

    I finally stopped procrastinating and got the window covers done on Saturday. The MH came with the shades but when we got home dealer had taken them out - which they denied. Last summer I had a shade screen I bought at Home Depot wrapped around the front. I bought the eyelets (already had the fasteners on the MH) last year but never got it done. I finally did - of course I wait until it gets near 90 to do it!! Not a perfect job - not even close but they will help keep the heat out. The last couple days were 100 and did notice a difference. Cost $30 for roll of shade screen and the eyelets. Need to go to Home Depot and buy a couple more (they are 6x20) - one to put on the big slide and one for the passenger side since the awning is shot so I don't bother putting it out. I will hang it on the awning to hang over the side tying it out enough for the door to open/close which also will make sure the frig vent gets air.
    • CommentAuthorWolf
    • CommentTimeJul 24th 2019
    I'm sure there are all kinds of moments, but it does sound overall as though things have settled down a bit. Like that phrase "I've been down so long it seems like up to me", having a period that's less awful is relatively good.

    It's high summer up here, of the ten weeks that can be called summer in the frozen north. It's almost 80 degrees out there and I have my windows open. It's a regular heat wave around here.
    • CommentAuthorJan K
    • CommentTimeJul 25th 2019
    This is just a heads up for caregivers who may not have been around when this made the news.

    Some time back there was information, especially in the caregiver community, about new laws being passed which said that nursing homes could no longer require you to agree to arbitration in case of a dispute. (This means a lawsuit-worthy dispute, like serious lack of care.) Even so, as I found out this week, nursing homes may still present you with paperwork to sign that says that you will not request a jury trial, but will agree to arbitration. You do not have to sign that paperwork! I didn't, and they just went right on to the next part of the admission agreement.

    Nursing homes may count on a person being distressed enough over admitting a family member to just sign whatever papers are put in front of them. I believe that arbitration would be to the nursing home's benefit, because a jury would be more sensitive to the fact that a vulnerable person was harmed. The nursing home certainly believes that arbitration would be to their benefit, or they would not still be trying to get people to sign papers to agree to it.
    • CommentAuthorCharlotte
    • CommentTimeJul 29th 2019
    I already signed that paper - too late for me. But, if I have to change placement I will not.

    Stopped by after my doctor appt to see him but he was sleeping. They said he wouldn't get up for lunch - it was around 1. I didn't wake him up - last time I did he was in a grumpy mood. I will go back this evening with the dog. I haven't seen him since last Wednesday. It is so hard to leave with that sad face it is easier on me not to go.

    Next time I take the dog I am going to check to see if her skin is red before going and then check after. She loves seeing him but I know it stresses her when we have to leave without him.

    Saw my doctor today. I see a resident doctor because I got tired of waiting over an hour in the exam room with no apologizes and then he was in/out as quick as possible. I really like the resident I have - he is 3rd year so I have one more year with him. He takes the time to listen and I feel he cares. When he came in he shook my hand then asked 'how is your husband?" Then said 'more important how are you?' Really hard not to talk about hb without crying. I have about decided I will go back on the Wellbutrin since I know it is not causing the hot flashes. Then maybe I can deal better with cleaning out stuff in the motorhome - both mine, his and junk. Also, maybe I can deal with life better and loose some weight. I told him I am going to just accept the hot flashes instead concentrating on what is causing the pain in my shoulders and upper arms. First is to verify if my left arm is the rotator cuff problem that I had surgery to repair two years ago or neck nerve. My right arm the pain starts in my neck moving across my shoulder down my arm causing horrible pain (reminds me when you hit your 'funny' bone) down my arm, shaking of the arm, and numbness. I can stop it by laying down and stretching my neck to the left which is why I think it is nerve caused. So doing referral to the doctor that did my shoulder; for massage therapy if Medicare will pay for it; and a spinal doctor to see if they can verify it is the neck causing it.
    I sure hope you can get some pain relief, Charlotte. You have enough to deal with as it is. I'm thinking about you and Art this morning--sending you good vibes and encouragement by ESP. : D
    • CommentAuthorCharlotte
    • CommentTimeJul 30th 2019
    Seems like he probably did suffer from heat exhaustion which is why he was sleeping. I concluded this from what one of the aides told me last night. It was probably from the day before. I also noticed he was quite sunburned and he was peeling on his ears and other places. I guess since they won't keep him in I need to find a hat he will wear when out. Sunscreen will do no good because when he starts sweating it will come off.

    I took the dog back with me around 6 last night figuring I would stay an hour or so. We ended up going out for ice cream then walked along the river and people watched. When we got back it was 8 so I asked if they could change the channel to the one America Ninja Warrior was on which they did. We watched it for an hour but then he started fall asleep so asked him if he was tired did he want to go to bed which he said yes to. Got his jeans off him to find out he still had the same 4 pair of underwear on that he had on a week ago. He let me take 2 pair off. He smell too - guess he refuses showers so they don't check his butt crack either. If anyone can get him into the shower it is the aide Joe. He won't be on until tomorrow so hopefully he can get him to shower. I got him into his PJ bottoms, set his CPAP up but when I left he was sitting in his chair not in bed yet. I told him the dog and I would be out watching TV while he goes to bed. When he didn't come out after a while we left.
    • CommentAuthorWolf
    • CommentTimeJul 30th 2019
    I wish that when I also got to that point, I would have been able to go home and start focusing on my own life more. I didn't. Or I couldn't. We had EOAD and from the first day I noticed something was off to the day she passed was just over ten years. Alzheimer's never stopped changing her noticeably every season. I don't know what it's like for it to move so slowly except that it must be exhausting.

    What I mean by 'got to that point', is that the care home situation is normal, which is that nothing is great but they're trying and care about their patients. If you go back some months to the experiences in the other home - it's like two different planets.

    Art seems to be doing fairly well where your stories of the underwear and showering are very familiar. I hope that you can find a few ways to make your life with your dog more than what I could. As I found out later, I was going to be doing that anyway.
    • CommentAuthorCharlotte
    • CommentTimeJul 30th 2019 edited
    You are right Wolf - I must remember this place has been way better so far. I did buy him a hat - not to see they can get him to wear it. I guess when they try to get him to come in he can be real stubborn at times and refuse. So far, they have not found what 'bribery' will work to get him in or co-operate. Today he put his jeans over his PJ bottoms. So he had PJ and jeans, no socks but shoes (I quickly put socks on him which he didn't battle me on doing) and three shirts. It is 90 degrees out - at least he was sitting in the chair in the shade.

    Last night the dog jumped off the bed and hurt her left front paw. She seems to be OK today. She is a little dog and have been unfortunately waiting for something like that to happen.

    I did shock my friend who is early to bed (like 7) and early to rise (like 5) by being up and out by 9. Went to Costco to get gas, then to visit her, to Ferrellgas to arrange for the guy to come put the quick release where the propane hooks up to the MH (is scheduled for next week), Walmart to buy a hat for Art, lunch at Taco Bell, over to see him then home to do laundry which is in the dryer now. Right now when I want to move the MH I have to disconnect at the big tank then have them come out cause I don't have the right stuff to seal it from leaking. I am slowly knocking down reasons not to move it. I am in the process of cleaning the patio so I can move the car dolly out from in front of the MH.

    There were clothes in the washer when I arrived in the park so went home for a 1/2 hour - went back they were still in the washer so I unloaded one to use. I hate when people don't care about getting their clothes out of the washer in a timely manner so others can use it! It was a young man - lucky I didn't say anything but I could not believe all the clothes he had stuffed in the washer more like two loads in one cause it was packed solid with clothes to the top.

    Feel good I finally accomplished some things today!! I did get the financial filled out for the yearly application for Medicaid Long Term Care then forgot to take it with me to mail. whoops!!

    Update: I was cleaning things out to move the car dolly but was not going to do it tonight. The young guy next door came out, asked me what I was doing so told him. When I took the tarp off the dolly it had a flat tire. He got his bike pump and pumped it up then moved it for me. I love my neighbors! One less excuse to use to not move this beast.