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    • CommentAuthorJan K
    • CommentTimeOct 31st 2019
     
    This is really off topic, but I finally decided that anything that can help to live through being a caregiver is not too off topic.

    We live where the winters are usually long and cold and dreary. In fact, it's snowing as I write this, and there is a wind advisory. But lately I've been reading books about hygge and watching YouTube videos by people who live in Sweden and Denmark, and these people would love to have the winters we have! Since they don't, they have all kinds of methods of getting through the dark months, and I'm taking their advice to heart. So this year, instead of just letting the cold, gray weather wear me down, I'm planning to fight back. Like finally ordering some battery-powered candles (no real candles with dementia, thank you very much) and actually using them in the morning and evening when it's so dark. (Candles are supposed to be very hygge.) Like not saving the hot chai tea for when I'm cold and tired, but just sitting down and having a cup (or two) every day. Like starting the day with music rather than the news. Like saying at some point that I am off duty, and wrapping up in a cozy blanket and reading a book.

    It seems like for caregivers, that there is no time or energy left over to take care of ourselves. No wonder we get discouraged and worn to a frazzle. This week I told DH that I wanted to strike for better working conditions! Since I can't really do that, this is the next best thing--to make my own better working conditions. Now if I could only find something that says that cookies are hygge, or maybe chocolate...
    • CommentAuthorlongyears
    • CommentTimeNov 1st 2019
     
    OK, found something that says chocolate is hygge . . . or at least the picture says that. Coffee, some slabs of chocolate, an open book?

    https://www.livingnorth.com/northeast/things-to-do/10-ways-to-make-your-life-more-hygge


    Or alternatively, hygge hot chocolate:

    https://www.hyggeishappiness.com/hygge-chocolate-coffee/


    Do those work for "granting permission" to include chocolate?
  1.  
    Jan, don't forget to get outside every day to get some fresh air and sunlight on your face--even if only very briefly. The student year I lived in Sweden (long, dark winter) I found that it was important for improving the mood and for keeping the complexion a little brighter. (You turn sort of yellowy-gray if in the dark all the time.) Later, as a nurse, I worked the night shift a lot, and found the same thing--some daylight and a little exercise (walking) outside during the day was definitely needed. It doesn't take much. It's interesting that there is a night nurse here in the apartment complex, and she makes a point of walking around the complex during the day. Same reasons.
    • CommentAuthorCharlotte
    • CommentTimeNov 1st 2019
     
    "Hygge (pronounced hue-guh not hoo-gah) is a Danish word used when acknowledging a feeling or moment, whether alone or with friends, at home or out, ordinary or extraordinary as cosy, charming or special"

    I would say chocolate and cookies qualify if that is how they make your feel. This is from the following webpage - had to look up the word:

    http://hyggehouse.com/hygge
    • CommentAuthoroakridge
    • CommentTimeNov 2nd 2019 edited
     
    However it's pronounced, I definitely need some some :) We are at the point I guess many of you were a year or two ago. All short term and most of long term memory gone now. His day consists of sitting in front of the tv and eating - and griping at me. Has gained 30 lbs. Refuses to do what the doctor tells him. Since our home is so open - cleaning house, doing anything really, interfers with this tv watching. Same thing over and over. Couple of days ago he was saying his pants wouldn't button so obviously I had done something - told him they were the ones he wore all summer, it was because he's gained so much weight. He told me if I didn't stop talking to him like that he was going to whack me. I responded the first time he whacks me I'll have him in a nursing home so fast he won't even feel the wind passing. Of course if he realized how expensive that is or what it takes he'd know it's not possible. I'm sure at this point he is just frustrated but so many changes coming and I really don't know if I'll be able to handle them.

    We've had a problem with our well - well man says a power surge....electric co man says broken water line...at least we've got water again but I just have to rely on repairmen. Both say there is no way they can get their big trucks up the hill where the pump is, now that winter is here. The pump man is going to come out again this weekend to take another look and give me his opinion and a cost estimate. Electric co wants us to replace our 6' gate at the front of the horse pasture with a 12' gate so they can get in that way -- as if I can just snap my fingers and it will happen. Dh won't even go outside and talk to them anymore just expects me to fix things. We had a problem yesterday - that thankfully turned out to be minor - but he just yelled at me to fix it and I kept saying I didn't know how - which doesn't appease him at all. Got the name of a guy who would be willing to do our odd jobs when the weather is bad and he can't work outside - but DH threw a fit in front of the pump man who recommended him - saying he could do all that. Finally had to let the guy know he has dementia. He looks normal and basically sounds normal if you just see him or talk for a few minutes, so it's hard to make anyone understand he essentially has no mind.

    On top of this he has started demanding sex again, several times a day, and when I ignore him he gets very sarcastic. After refusing to even think about selling this place - which neither of us wanted to - he now wants me to sell it and buy another place. Right now! And you all know how trying to reason with him goes. The CBD gummies do help me sleep sounder I think, but the fact remains, I'm old, tired and depressed, LOL. I need surgery on my left hand and have kept putting it off but finally decided to schedule it so I could have the winter to recover but at this point I'm not sure that would be possible without getting some outside help. Our money I thought would last has been going so fast it's scary -- when you have to hire everything done it costs twice as much and it seems like everything from our car to the well is at the point of having to be replaced. Our youngest son was here last month for another week, and says they can't retire and move back here for at least a couple more years -- so even though I've said I'd never move back to CA -- I don't know if I can hold on for another two years.

    On a better note, I have a recipe for Chai Tea, using 1% milk, low cal and is good hot or cold. If anyone is interested in the recipe let me know, I make about half gal at a time and keep it in the fridge. Hadn't thought about it in awhile but need to make some up for myself. I do agree with the value of getting outside even if just for a few minutes. I can't get dh outside but I go out several times a day, just to breathe :) Thanks for listening, I had thought we were doing pretty good till it all turned upside down.
    • CommentAuthorWolf
    • CommentTimeNov 2nd 2019
     
    I've started demanding sex again too. Unfortunately, a fat lot of good that does me where the only thing that happened was that the cats suddenly ran away. "I didn't mean you!" I shouted after them but I haven't looked in a mirror lately, so...

    I once advised a reader to begin hitting her spouse about the head with a baseball bat, but Joan made me change that to a (large) nerf bat. I do think beating him with a nerf bat for a while will take his mind of demanding sex wonderfully, but I can't say I have any clinic evidence. Hang in there.
    • CommentAuthorCharlotte
    • CommentTimeNov 2nd 2019
     
    Oakridge, so sorry you are going through all this. I think most of the disease is hard to go through but what I miss most I think is my Mr Fix-it. I have to agree about selling. There is so much to be done in taking care of the place especially when things go wrong and you have to find a way to pay for it. It can become a money pit. If he hits you call the police but I would first contact them to see how they handle physically abusive dementia patients. As for the sex there are medications that can help kill it. Thankfully my husband lost all interest but I know depending on the part of the brain and in FTD wanting sex all the time is normal which is where medication can help.

    Keep yourself safe my friend.
    • CommentAuthoroakridge
    • CommentTimeNov 2nd 2019 edited
     
    Hey Wolf, that may be why my cats are staying upstairs these days, LOL. You old goat! Thanks for the laugh.
    • CommentAuthoroakridge
    • CommentTimeNov 2nd 2019
     
    Whoops, think I forgot to upload my answer to Charlotte, it disappeared. Without writing it all out again, I thought he'd gotten past his obsession with sex - in fact the last few weeks we seemed to be in a good place - other than the usual driving me crazy part :)

    Although he rarely makes sense nor can understand - today when I was trying to tell him about fixing up the place to sell for more money he said what's the difference? We sell it like it is and maybe take a loss or put more money into it so we can get more money out - I don't see how that makes sense. Actually, he made a lot of sense, LOL. Because we have such an unusual place we might put another !0K into it without realizing that much more. It's a place you either love or hate depending on your personal likes. I hate the thought of selling and hate the thought of staying. Wish I could just hand the responsibility over to someone else.
    • CommentAuthorCharlotte
    • CommentTimeNov 2nd 2019
     
    What I would do is talk to a realtor or home appraiser to find out what would be worth fixing up and what would be a loss. You are right, you could spend $10,000 on fixing up and not even get that much more out of it. Once you know then you can use that info to make decisions on whether to do something or not.

    I would also keep in mind your income when he is gone. I had people encouraging me to sell the RV and move into an apartment. I would not get much for the RV but it is paid for. Living in an apartment would cost me twice what an apartment would. Yes, there are repairs to it but overall it is still cheaper especially when I consider when he dies my income drops over half. Yes, I could get eventually get rent assistance but how would I pay the normal rent until then? It would take all my savings to pay the deposits to move into one, too.
    • CommentAuthorCharlotte
    • CommentTimeNov 4th 2019
     
    Talked with the admin today about putting his dresser in the closet and locking the door so he can't carry his clothes around but first they need to find his missing underwear, socks, pj's, and the missing long johns I just bought. She said some of the underwear might have gotten thrown out because they were so soiled. I told her then they need to let me know cause I have more at home. Evidently he has been having accidents often. I think he thinks it is gas but turns out not to be. His gas has been more often and smells horrible since he went on the risperdal. They want to put him in pull-ups in hopes it will be easier to clean him up. I told her that was fine as long as he is still able to pull them down to pee since that is not a problem. He had gained three pounds the first two weeks on the risperdal but lost it last week. On Wednesday will be interesting to see if he looses anymore.

    Tomorrow I take Jas in to get her teeth cleaned and a couple they want to pull. Will be a big bill but figured I better do it now while I still have Art's SS check. I will use some of the money I have saved for motorhome tires then rebuild it up for next spring.
    • CommentAuthorpaulc
    • CommentTime7 days ago
     
    Taking care of your dog's dental work is important. She should feel better a couple of days after the cleaning and teeth pulling. Putting it off can just result in larger vet bills and an unhappy dog. Dental work is one of my biggest concerns every time I bring in my cats.

    Pull-ups sound like a good solution. Leannah is on them. She doesn't resist them during the day but she won't wear the adult diapers at night. The compromise is for her to wear 2 sets of pull-ups at night along with a pad. That is enough to absorb the pee. I think she finally accepts that she isn't just sweating at night but she sill won't wear the diapers. I learned a week ago that she needs the pull-ups for both #1 and #2, though she goes to the toilet frequently.

    I don't think I mentioned here that 2 of her college friends are visiting her on Thursday. It is a 4 hours trip each way for them. They realize that the progression is accelerating and better to visit now while she can enjoy their company. I am sure this will make her very happy.

    It looks like Leannah's use of a wheeled walker is permanent. She is doing much better with it but there is still a concern that using the walker might be a bigger fall danger than not using it. PT is working with her on it. She needs to be reminded frequently to pick up her feet.
    • CommentAuthorCharlotte
    • CommentTime7 days ago
     
    This is the first pet - dogs or cats - that I have ever had their teeth cleaned. Never had problems before. They all lived into their mid teens with no teeth problems. I think her problem lies in the 2 years before we adopted her. I would not be surprised if she had been in a puppy mill type of situation. They are pulling the lower front teeth between the canines. They say the broken one looks good but along with the others there is bone loss to keep an eye on. They say the probiotics they want me to buy should help with bone and teeth health (almost $60 for 6 month supply).

    It is nice Leannah has friends that visit even if rarely.
    • CommentAuthorCharlotte
    • CommentTime6 days ago
     
    Did anyone's spouse participate in the Biogen promising drug called aducanumab? The link goes to an article talking about when they went back and looked at all the data together, it showed promise so they are hoping the FDA will let them restart but giving the drug, no placebo group.



    https://time.com/5709023/biogen-alzheimers-drug/?fbclid=IwAR3tN5AxVnThTShi77f0b1AszKieUVtRkIrjpGha8_oFRfaTXSrWou4emC8
    • CommentAuthoroakridge
    • CommentTime5 days ago
     
    Charlotte, this is the first time I've even heard the name. It sounds like it's more for early stages? I read last week there is a fairly short period 1-2 yrs maybe where Aricept will really make a difference, and there is no reason to take it for years. I'm going to talk to our doctor next time we go in.
    • CommentAuthorCharlotte
    • CommentTime5 days ago
     
    A facebook group for spouses I belong to there are 2 women whose husband was in the trial. One was taking the placebo but after the trial was given the drug and she saw a difference, especially after it was stopped. The other one was not sure she noticed a difference. My thinking and always has been: since this disease is so unpredictable, how do they really know any drug helped because we don't know how they would have been without it.

    I think the 'honeymoon' with Rosetta is over!

    I am afraid I was not too pleasant when I went to see Art this afternoon. I asked the swing shift girl what his weight was yesterday. She said they don't weigh him anymore, hospice does his vitals. Was not happy she could not find the info anywhere but will talk to Jill tomorrow to verify they have no way to find out. I did leave a message for the hospice nurse, too. On Monday I told the director, Jill, my solution to his clothes disappearing which was to put his dresser in the closet since the door is kept locked. But, they need to find his missing underwear, socks, t-shirts, and the new long johns. I was expecting after three days to see progress but there was none. In his room was not one pair of socks, underwear, t-shirts (although I think most are in the closet hanging up) nor the long johns. All his pictures are also missing so who knows where he carried them off to. I was saying something about the plan to the girls and one lied to me giving me excuses instead of just saying she had no idea because she had not worked the last three days. Well, lying does not go well with me. I was getting upset when she was giving me excuses then she says she had not been on. I asked why she just lied to me instead of telling me the truth. She just did not understand it. She walked outside to get away while I talked with the other girl. She didn't either understand I don't like being lied to which was my problem with what she said. I am sure I will hear about it. Since Nachelle left things have gone downhill is all I can say. 'J', the other girl did say there is a basket full of socks in the laundry room that they don't know who the socks belong to. I told her his name is on them all. When I do notice them getting faint I darken it again.

    I not sure if what I feel is valid or not, but i feel now that he is on hospice they really don't want to take responsibility for him. They are more babysitting now than before. He appears to be wearing the same socks and clothes he was on Monday.

    The news from the MRI for my lower spine was not good - really bad arthritis. Need to loose weight - easier said than done - because the fat is also helping to pinch the nerve. I go in next month for a cortisone shot in the nerve to calm it down.
    • CommentAuthorpaulc
    • CommentTime5 days ago
     
    Really astounding how quickly Leannah's FTD is progressing. Seeing lots of language problems. A nurse told me the other night Leannah went to bed with all of her stuff animals and then asked that the Republican National Committee be put in bed with her. The nurse thinks that Leannah was asking for something that was red.

    Continued use of the rolling walker is still undecided. It does help some but presents new problems. Leannah sometimes walks into a wall because she is concentrating so much on the walker. I've noticed that she can't back up. One benefit of the walker is that she always has a seat with her in case she gets tired and there is no chair nearby, but she can't let go of the walker, turn around and sit on it. She has shown improvements in using it but we don't know if she can continue to improve. PT is still working with her on it.

    Two of her college friends were supposed to have visited yesterday. I haven't heard from them, I'll call one this afternoon.

    Her father, aunt, and a childhood friend are planning on visiting her the day before her birthday this month. I'm glad her friend is joining this trip since her aunt doesn't do long distance driving and her father has some vision issues and shouldn't do a long trip himself. Her friend has made the drive before but refuses to drive on the Interstate, making the trip somewhat longer.

    On the medical side they are removing one of her medications. It will take weeks or months because it needs to be reduced in steps. Side effects of drugs might be contributing to some of her current problems but keeping her behavior in check is #1.
    • CommentAuthoroakridge
    • CommentTime4 days ago
     
    Paul, did the nurses try the CBD? Could they see any changes? If they give it to her during the daytime, it might be making her feel a little drowsy and not steady on the walker. I really don't know a lot but I did order a higher concentration this last time. So I take just 2 pieces rather than 3 for the same dosage. If I take one during the afternoon it does make me feel a little drowsy and if I lay down can go to sleep. I use them in the evening for my insomnia. The difference I notice, which is why I continue taking them is, once I get to sleep I seem to sleep more soundly, and maybe a little longer.

    I love her asking for the RNC to be put in bed with her, you should send that to Reader's Digest, LOL.
    • CommentAuthoroakridge
    • CommentTime4 days ago
     
    Charlotte, being blessed with horrible arthritis in about every joint I know whereof you speak. Something to be aware of - If they decide on surgery - or if you decide to do it - do it earlier rather than later. By the time they figured out the problem, we went through $$$ of epidurals & treatments, even with insurance. At minimum, they needed to do a full fusion. However, I was 73 at the time - the neurosurgeon felt I was too old to ever make a full recovery, she didn't do it on anyone over 70. While the team of doctors was trying to decide what to do I ended up developing cauda equina and having to have emergency surgery, which dramatically changed my life.

    I dealt with terrible back pain, sciatica, nerve pain etc for over 10 years and Drs just prescribed PT, chiropractor, drugs etc -- one suggested epidurals but scared me with the description. If I had been smart enough to insist on seeing a surgeon at that time, or request any doctor do a MRI, they would have found the damage years sooner. Everything I loved to do - I'm unable to do now. And since DH doesn't drive anymore, if I have to go someplace alone, I have maybe an hour before I can't walk, so have to time things so I can get in, and get home within that time or I'm unable to drive home.

    Be as proactive with your own health as you've been with Art. Losing weight is doubly hard with pinched nerves - everything makes it worse - but I hope I scare you into taking care of yourself while you can. Maybe a program like WW would help -- you can get all the info necessary online by googling, without paying any money. I hear so many times, the wife has ruined her health taking care of a husband with dementia, then there is no one to take care of her. A pinched nerve at the right spot can cause instant paralysis, and only sometimes reversible. I am never without pain. It's like AZ, you finally reach a point of acceptance -- but for heaven's sake, please do whatever is necessary to protect your health.
    • CommentAuthorpaulc
    • CommentTime3 days ago
     
    They tried the CBD. If anything Leannah's behavior was worse with CBD, though there is concern that this is simply FTD progression. 3 of the nurses take CBD themselves so they were eager to give it a try. The CBD is not involved in her worsening walking, though other meds might be contributing to it.

    I will add that my friend has had two spinal fusions (lower back and neck) which are related to arthritis but also a more serious condition. Both operations were very successful.

    Today's visit leaves me questioning if Leannah should be using a walker. She fell while I was there. She is doing better with the walker but she gets tired and the walker gets pushed ahead of her and she falls. It was the 2nd fall in 24 hours so she is now in a wheelchair for at least today. I think she needs a formal evaluation to get out of it.

    She walks better sometimes without the walker. The problem is that she tires easily and when she tires she needs to sit down right now. The walker provides a portable seat, which she has learned to use.
    • CommentAuthorCharlotte
    • CommentTime3 days ago
     
    Unfortunately with Medicare they require a process of trying other things before surgery.

    I wrote my feelings down and sent it to the nurse who oversees the facility. She thanked me and asked if I wanted the Jill to see it. I do but I have not had the 'energy' to reply to her email. In the letter I said I thought moving him to 'R' that I would be done fighting for basic care. I am tired of the battle after a year. I wished I could be like his roommates spouse and just not show up but that is not me. Anyway, at least I expressed my frustration. She thought it was good to do in a letter vs trying to say it in person.

    Doesn't help we have had this stupid 'air inversion' for almost two weeks now with no end in sight. It has gotten so the sun doesn't burn through the smog until late afternoon just before sunset (or so it seems). Living in a valley can suck at times!

    Sorry Paul that things are progression and with the balance problems. Too bad they don't make a walker with the seat behind them yet be made to they can lean forward without tipping. I will have to pay more attention the next Shriner's commercial cause I think there is one of the kids that has a walker that surrounds them and see if so does it have a seat.
    • CommentAuthorCharlotte
    • CommentTime2 days ago
     
    His dresser is in the closet but it did not contain his socks and underwear.

    Today I finally went after dreading going. My stomach has been in knots and been crying off and on since Thursday. He was sitting on the couch asleep - took a long time to wake him up, even the dog could not wake him up. I did get him in to his room to shave since his last shave was on Monday when I was there. He smelled so I told him I need to check his butt crack. He was a little poop dirty from the farts or not wiping good but his butt crack was raw - first time since he has been there. Told him he needed a shower so I could put medicine on it. No argument thank goodness. He did have one pair of clean socks and underwear in the dresser. First shower since the last one I got him to take about a month ago. His feet were also swollen which is not normal for him. Even when he was on his feet all day they never swelled.

    This is what he had on:5 shirts, underwear, pants, long johns, 2 pair of PJ bottoms (not his either). I was sweating just getting them all off him! He ties the PJ's so tight and in so many knots I just cut the strings!

    When I left he had clean clothes on, clean shaven and admitted he felt better after the shower. He was sitting at the table for dinner. While waiting though he fell asleep. Hope he woke up to eat - the dog and I went out the back door. I don't know if it is the risperdal or just the progression causing this change. I will talk with hospice nurse tomorrow.
  2.  
    Just not acceptable, Charlotte. He should be getting better care on Hospice....not worse. I am really upset for you and him about this. (Sadly, I was battling this kind of thing all the time when DH was in Rehab or on his nursing home Respite week that time. Poor care...or no care...is everywhere.) Sounds like the facility thinks Hospice is taking care of him, and Hospice thinks the facility is. He is falling right through the crack between the two entities. At least, that's what it sounds like. You probably need to talk to the chiefs, not the Indians, to try to get some at least basic, standard care for him.
    • CommentAuthorCharlotte
    • CommentTime1 day ago
     
    Spoke with the hospice nurse today. Right after he went on she took 2 weeks vacation. During that time they upped his dosage of Risperdal from .5 to 1 which she has no idea why since the .5 seemed to do the job. She is putting in the order to reduce back to the .5 and also lasix for the feet swelling. She will be there tomorrow where I will be there too.

    Problem with the chief since the leader left the chief seems to be sick a lot. I was trying to figure out which of the ladies there would be one to be a leader but I really can't think of any that shows that quality. The need someone to step up and be #2, the leader of the rest of the staff.
    • CommentAuthormyrtle*
    • CommentTime1 day ago
     
    Charlotte, This is just awful. It's outright neglect. Hospice should have had someone to cover for the hospice nurse while she was on vacation. I hope now that she is back, she'll do something about his personal care.
  3.  
    I'm thinking of you and Art today, Charlotte. Keep us updated if you get a chance and feel up to it. I wish I could come right over there and help out.
    • CommentAuthorCharlotte
    • CommentTime14 hours ago
     
    I sent Joan a message via FB the other day about the spam but guess she hasn't seen it.

    Had a good meeting today. They did find 5 pairs of his socks and I took two more in. I took the 5 underwear I had plus the two they found. I am assuming the rest were tossed cause the ladies didn't want wash them. He is in diapers (more diaper than a pullup). He accepts them but when he had to pee while there he couldn't figure out how to cause there was no flap. Then when pulled up they just didn't feel right. He also likes to tuck his shirts into his underwear (has always done this with his t-shirt) but could not in the diaper. Time will tell how it works out. Jill brought up the idea of giving him the basket of socks to carry around and/or fold. I have no problem with that = will make him feel useful. So will see how that works. I guess with the sweeping he would leave the broom against the wall and Manny would get it and hide it in his room!!! :-)

    As for the risperdal - his dosage was never changed. The order the hospice nurse found had never been forwarded thankfully. We have concluded the way he was on Sunday was an episode of his heart rate slowing down. I did try to take his pulse but could not find it but should have checked his carotid. The feeling is that he will die one night in his sleep from the heart condition. So odd that he has never had heart problems but this disease has caused it. My thinking is since it is happening more often, that might not be that many months away. Also, they figure that is why his feet were swollen because he was sitting Sunday with low heart rate so the blood pooled in his feet. Today his left foot was fine, the right was still a little swollen. They will keep him on the lasix for two more days, make sure they increase his fluids then it will be PRN.

    My doctor was not concerned with my 'pitting edema' since I have no other heart symptoms but he is going to order a echo-cardiogram to be sure. I just need to get serious - loose weight and exercise.