Went to the knee doctor yesterday. The pain is due to narrowing of the gap with minor arthritis but not bone on bone. She put a cortisone shot in there. Got RX for a couple PT sessions to get the right exercises to strengthen knee muscles. I figured out a couple weeks ago the muscles were weak from not enough activity because the problems of tendons slipping was just like my shoulder after surgery where the doctor said once the muscles get stronger it will go away. She also said I need to loose weight or face knee replacement sooner rather than later. I love when an overweight doctor tells you to loose weight! So somehow I need to push myself to get active. My Medicare supplement has some type of gym membership benefit so will look into that. She did say no treadmill which is fine with me, would rather the bicycle.
A foot doctor once told me that the treadmill was the worst machine in the gym. He said a lot of the injuries he saw were the result of the repetitive motion.
Went to the store - nice to walk without the pain. Bought new toys for the cat and also a little bottle of catnip spray. I sprayed it on the sisal rope on her cat tower and some of her toys. When she came in she was going in circles trying to figure out what was going on. Not sure if it will last long but was funny to watch the brief craziness!
Got a call from Day Services. She wanted to let me know the last two days Art was crying a lot about his parents being dead. They died in 2001 and 2010. Also, he talked about wanting to leave and walk home but didn't know where home was. She said they paired him off with another guy who is about where he is in the disease. Sounds like another stage in this disease. I am going back to giving him melatonin at night. He is not sleeping well - tries to stay awake until I go to bed. May up his sertraline again to the 50 mg a day and see if that helps.
In Good Housekeeping magazine, they have questions all through the magazine that they provide answers for. (Usually it's a thinly veiled advertisement for something, but it still provides information.) This month they had a question by someone who was overwhelmed with caring for a family member. Their answer was: "There are services out there that hold your hand through the caregiving process. A favorite of ours is Wellthy.com, which handles everything from scheduling doctor's appointments to vetting in-home aides to negotiating insurance bills. All you have to do is create an account on wellthy.com, and you'll be paired with a care coordinator."
I looked it up. You get a care coordinator for $300.00 per month! Gee, why don't we all do this?!! Guess because we're not all "wellthy". (Did they really think about what that name sounds like?) I find this "wonderful solution" to be a slap in the face to overwhelmed caregivers who are already struggling financially--see my hand raised here. And I don't think you'd ever be able to stop the service, because they would have all the information that you needed to start doing all this yourself.
bhv - just to keep you posted about my husband's aggression. I had a meeting with the doctor yesterday & my hb is on meds to control his aggression. They will never send him back home - they can't kick him out of public long-term care. He can be transferred to another LTC that better meets his needs,(which is what happened to him 2½ wks ago) but he will always be in a government subsidized facility.
Unlike the private residences that can tell a resident to leave, which is "kind of" what happened to him in his 1st private residence he entered in June last year. He was in the private for 5½ months & after too much aggression, he became a priority to enter the public LTC. And the public LTC is much better suited to meet his needs. I'm much more satisfied with his facility now. The downside to public LTC is the patient must meet certain criteria, then be put on the waiting list, which is often long. In private residence, no criteria is needed, but it's much more expensive.
I don't know how it works where you're living bhv, but if your hb enters a public LTC are you worried he can be kicked out? Is there not a difference between the private & the public facilities?
The doctor also told me my hb will be in their care for probably another 10 years, since he's young & in good physical health, unless he gets another illness. You know, hearing 10 years would normally make a person happy, but not with this disease - this was not music to my ears. I was quite upset & had mixed feelings...... I feel I'm living in limbo - but I don't want to live in limbo for possibly another 10 years. I'm going to have to try & work on that..... I have to stop "holding my breath" & start to live...
I can't visit him anymore this week because they have an influenza outbreak on all 3 floors. As of yesterday, he was not sick - hopefully he won't get sick.
Nicky, bvh lives in the U.S. and we don't have the same system here as you have in Canada. Our bad luck.
I question the doctor's statement that your husband will probably live for 10 years and I'm surprised a doctor would say that. Age and good physical health (except for the brain) are only two factors. If those things remain stable, it will be your husband's brain disease that will end his life and the doctor can't possibly know how fast the disease will progress. Anyhow, I agree that it would be good to stop holding your breath but it's hard for most of us to do that.
Yes, myrtle I agree, the doctor really can't know how long my husband will live. I'm assuming the doctor is going by her experiences with other Alzheimer patients & on that floor, he's the youngest at 67 - the average age is 80.
I don't know how much longer he has, but since he's declined rapidly last year, I thought he would not last more than 2 -3 years. It's actually a good thing the doctor mentioned 10 years(even if it might be incorrect), because it's forcing me to really think about living my life. When I thought it might only be a couple of years, I had no problem "holding my breath" & "putting my life on hold" since I thought that was a short period of time..... but now I realize whether it's 2 years or a long 10 years, there is no logical reason for me to live in limbo. Now having said that, I hope I can manage to start letting go & move forward..... easier said than done. But at least I will try to start thinking about letting go - something I would not have even considered until he was gone. Does anyone have any suggestions or ideas that have helped them move forward - even just a little???
Well, our Alzheimer journey lasted 14 years from the first mild but troubling symptoms til the hellaciousness of the last four months that just about killed me right along with him. I paid for private home aides when the time came, so I could keep my job as long as possible. After work, I wrote book reviews for an international journal, wrote a healthcare column for my NYC writer's group that was called "Writercare" (some of those were picked up internationally, too), and got a Masters degree in Public Administration on line. I sang with my church choir as long as I could, although I had to eventually give that up, as well as my piano and voice lessons. Past a certain point, I just couldn't get out of the house unless I paid an aide to be there, and sometimes it was more trouble than it was worth. I've often thought that for those folks stuck home with a spouse in a facility, it would be a wonderful chance to start working on creative hobbies or crafts--things you can do by yourself at home that don't cost too much and are a way to express yourself through the art or craft. Oh, and learning a language on line is another thing you could try. Babbel is not too expensive (some courses, like Rosetta Stone or Pimsleur are pricey--look for other, cheaper options)--I worked on my French, because I love to go to Quebec. (Montreal department stores, here I come! Bonjour, madame, je voudrais acheter touts les choses!)
I'm back from trip to Iceland with son and daughter-in-law. Had a really good time being a tourist in the winter. Did, I am so glad to say, see the Northern Lights. They were beautiful.
Charlotte, I remember being able to unlock my partner's memories when she could not find the key. Then I remember being being able to finish the thoughts she could not complete. After that I just had to let her ramble on and one, first listening intently for thought and logic that was just not forthcoming, and finally summing up her incomprehensible statements with "You know, that is a very good idea. Let's discuss this more (when we get home or tomorrow). You may have something there." I hoped I was being kind as well as allowing for the rhythm of speech to naturally occur. Had at that point no idea what she was trying to say and was certain that she didn't have any idea either.
Elizabeth, you have got me thinking. Alone now I have no idea what is next. So I am just drifting...... But I need some task, some meaning, something to do that might make a difference for me, my neighborhood, perhaps even my nation. But the my future path is just fogged in.
Geez, Charlotte, that woman gives me the creeps. I have some cards.from the office on aging that say the person I am with has Alzheimers and asks for patience. One side English, one side Spanish. It has come in handy. But I might have just gone completely off on someone telling me I am SUPPOSED to be finishing his sentences. I've been finishing his sentences since 2009. Can't do it any more. There are no clues whatsoever.
Lindyloo - glad you had a good time and got to see the northern lights. I have seen them but nothing like they would be seeing a lot further north. If I ever make it to Alaska that is on the list to see when up there.
I guess I'm being dense, as usual, but I don't understand letting the poor devil stumble until he gives up. As far as I'm concerned, Alzheimer's patients are like mentally retarded children and there's no call to be deliberately cruel to them. When my husband was at that stage, he knew he was not doing anything right and he was embarrassed, so I tried to do whatever I thought would make him feel better. I didn't always finish his sentences but I did pretend to understand him and I smiled a lot. Even though it was all phony, it was no skin off my nose - it was just as easy to be kind. Yes, the Alz experience is a freaking nightmare but making him look more foolish than he appeared to be would not have made things less stressful for me.
Lindy lou, I was in that gray, misty fog, too, after DH died. Just be kind to yourself and don't put a lot of pressure and "shoulds" on yourself. It takes the time it takes, and don't forget--a lot of your store of energy is being sucked up into the grieving process. Your new life will gradually start to appear out of the mist. And since you are most likely deeply altered from the caregiving process and the death of your partner, you'll have to just let the river of time go by for a while as you gradually learn about who this changed person (you) really is.
Myrtle, I like your post. Dealing with dementia is all about kindness and the struggle to preserve their dignity. He was not a "fool" of course. That was just the AD. I've read your husband's obituary--and I have to say that he sure sounds like someone I would have liked to know.
It is always helpful to ask yourself how would you like to be treated if the circumstances were reversed. Not how you think you would be treated, but how you would like to be treated.
elizabeth, I know he was not a fool. I was just trying to maintain a breezy tone so as not to sound judgmental. (It didn't work.) I'm gong to edit the post to change the wording a little. Yes, marche, I agree that the "Do under others . . . " rule is a good guide in most situations. I think that the main reason many so people fear Alzheimer's is the loss of dignity that they sense. As we spouses know, loss of dignity is not the worst of it and it's something we can address, at least to some extent.
I should have said that dealing with dementia is all about kindness and the struggle to preserve their dignity and to Keep Them Safe. Their safety is the priority--and making sure they don't do anything to endanger anybody else...like driving when they don't have the mental capacity to do it. And of course, the caregivers have to put a priority on taking care of themselves, too. I think that especially in the marriages that are not close, and where the caregiver has really got stuck with something, the caregiver has to make sure they are doing everything they can to...yes, care for the ill spouse...but also--and probably much more so than those of us who had/have happy marriages--to take care of themselves. Easier said than done, but I think there is a special place in Heaven for those caregivers who took or are taking care of a spouse they didn't have much affection for. That is really stepping up to the plate and showing sterling good character--an example and an inspiration for all.
I don't think you can always "take care of yourself." The stress I experienced was the direct result of being a witness to what was happening and it did not abate when he went into LTC. I was able to take care of him and (for the most part) maintain my composure by compartmentalizing different parts of my life. I used every source of help that was available to me - a care manager, day care, home health aides, LTC, antidepressant drugs, psychotherapy, dinner with friends, exercise, gardening, etc., etc. But my personality type is to focus on one big thing (rather than on many smaller things) and my husband was the most important thing in my life. So most of the things I did to relieve stress were ineffectual. All they did was to distract me for short periods so I could return to the nightmare of my husband's decline. I know others have found real respite in cups of tea, appreciation of nature and music, etc., but I am just not wired that way.
As far as people who do not have much affection for their spouses, I have no idea. Given my all-in way of operating, caring for a man I did not like might have been easier for me, since I would have been able to step away psychologically. However, there would have been a lot of resentment, which given my relationship with my husband, I did not have.
But you did take care of yourself as best as you could, Myrtle. There's no question that Alzheimers caregiving will do us in--but we know that. We're all struggling with either the disease or the aftermath...that's why we all come here to Joan's.
Interesting post about traveling, Long Years. It would be a hoot to get an RV and travel all over the USA and Canada visiting forum friends. But I think we have at least one in Australia...hmmmm. That would be a stretch.
Good, but painful, discussion here. I didn't mean to come across as a goody two-shoes, I got rushed and posted before thinking. . . Who among us has not lost our patience. What I meant to say was that it was helpful for me, if I had the self-patience, to take a step back and think about role reversal. Sometimes I would get frustrated and express that I was frustrated/angry and husband's body language would change, his face would change - and it made me stop. Sometimes I had to leave and come back.
I cannot imagine how awful it must be for them when nothing to make sense anymore, even the voice of someone who has been with you for decades. And then when vision gets distorted and they can't understand words.
The truth is that no one was putting themselves in my shoes and I needed that love too. You just reach a point of despair.
There is no answer here, other than tomorrow is another day, a new day, and we must always try to be the best we can. If we don't despair wins.
myrtle, you have described how I feel. I'm so glad you posted. I have tried to compartmentalize some parts of my life & that seems to have helped to some degree. I agree, the stress I am living is the result of seeing him in that state. And like you I have not found real respite - I've joined the gym & go to zumba classes 3 times a week, take 1 class of line dancing a week & sometimes go to lunch with a Meet Up group & I enjoy all those activities, but they only distract me. My husband is always "in my head", no matter what I do - even during zumba classes. He is such a big part of "me". He's gone cognitively & a part of me is also gone.... And I feel I'll never get that part of "me" back. I'm finding it very difficult living as half a person..... I fear that when he passes away, he'll unintentionally take that part of me with him or perhaps I'm allowing that to happen – I don't know....
When I visit him in LTC & I look into his eyes, I cry. And I cry even more when he recognizes me, smiles & tells me he loves me. It breaks my heart to see my better half in that condition.... I've become much more emotional since he's been in LTC. When he was in a private residence, there were lots of activities & conversations with the autonomous residents that were pleasant distractions & it helped me cope. But the environment is different in LTC – although I prefer the care he's getting at LTC, it's making me much sadder - we all know it's a depressing place...I can't wrap my head around the fact that my husband has this disease - & being in his sixties makes it even worse for me. We always think these things happen to other people...never to us.... All I can say is the "long goodbye" of Alzheimer is brutal & I'm sure everyone here feels the same way....
Nicky i so relate to the second paragraph of your post. Unlike your first paragraph I have found my respite, I am doing well enjoying life, that is until the phone rings from the facility or until I visit. I still have tears when I see the state that my lovely Lisa is in. It breaks my heart. Although I say I am doing well the emotions are always just under the surface and they come rushing out at times cannot help it. So once again one foot firmly in the Demetria world and the other enjoying the real world. Like you Nicky I think I have compartmentalized my life.
Latest switch coming I will start a new thread going to move away from the anti psychotic drugs and move towards using cannibus oil. I will start a new thread on this topic.
Yes, Rodstar, where did everyone go?? I couldn't access the forum all day. Did anyone else have trouble?? I thought it had shut down. Glad to see it up again.
Yes I had tried several times during the day to get on. Glad to see its up again. I was hoping someone was getting rid of the spam but I see its all still there.
Hi Rodstar. I was thinking about you earlier. I am here. I am not sure what's happening though. Some things here say they are only a few hours old, but I am pretty sure I read them several days ago.
Things are in a holding pattern at my house. We had 6 days of no pooping incidents so I was hopeful that was resolved. Started making plans to find some interesting things to do. Then several.days of mess again. Now back to ok again. If he is not pooping all over the place then I can leave for a few hours and not need to hire someone. If he is pooping all over the place then I need to get him to accept the depends and hire someone. But it keeps going back and forth.
Then I keep thinking about the ones who say the point of Alzheimers care is to be kind and preserve dignity. They seemed to say if I don't finish his sentences I am unnecessarily cruel. So I fnd myself trying to figure out if I am being kind enough. But it gets so frustrating because there isn't anyone being kind to me. I know I am not to take anytbing personally. He gets a free pass for everything. I am supposed to be kind and smile and imagine how difficult things are for him and make sure I am sounding nice enough when I am trying to help him so maybe he won't rub his poop filled underwear in my face.
I've been helping him shave more often and washing his hair more often. I even cut his hair yesterday. He is getting used to me cleaning him up and generally is willing to put on clean clothes. Whew! That's a big change. I am better at keeping my voice even and saying things like this kind of thing is much more difficult now that we are older. I'm making more treats for him and he seems to like that. Wish I could think of something to talk about. Still can't keep the snarkiness out of my voice when he comes in the kitchen and just stands therein my way staring at me and won't leave or leaves and comes back in 30 seconds or less.
Last night I went to bed and when I closed my eyes I was convinced I was falling down a dark pit with no bottom and I couldn't feel the sides. Just kept falling. Started crying a little. Hb pats my back and says everything is ok. No, nothing is ok. Ok he says.
Tonight I am afraid to go to sleep. He keeps wandering around up there and keeps coming down here. He wants me to go upstairs. If I wanted to be kind enough I guess I would have gone up there 1.5 hours ago. But he wants to cuddle and I cannot tolerate being touched.
My doctor wouldnt renew my antidepressant prescription. Dont know why. Not time to see her. I don't think it is working anyway. I already know I can't increase the dose. So I am going to taper it off and quit it. Will keep in touch with my hospice nurse friend whn I start that process. Tomorrow lunch with Patty. Yeah. I think I will go golfing Tues or wed. That will be better than drugs anyway. We'll.see if hb wants to ride along or stay home.
Am working on a letter to tell his sons about the Alzheimers. Then decided to make some picture cd's of their father and their grandparents. His oldest son named his daughter Maggie Rose. Rose was hb's mom who had Alzheimers. Found pictures of us when we were dating and young married. I have difficulty remembering what that felt like. It was like looking at pictures of strangers.
Bhv, I think you need to get away from him whether he is having a good day or a bad day. You need to have some life of your own--I know it is easier said than done--but you can't let your every passing day be controlled by Alzheimers. I think it is important to be kind to the patient and to preserve dignity, but I don't think that's the whole point of Alzheimer care. Yes, it's a a good thing to be kind, preserve dignity, and keep them safe...but Alzheimers is the one disease (well, any dementia, really) that is just as harmful and dangerous for the caregiver as it is for the patient. The patient is going, going, gone...and the caregivers can't let themselves go down the drain with them. So one huge point in Alzheimers care is to get some help, give yourself a break--whatever it takes, whatever that means for you.
I have been gettng away more, clearing brush in the ravine, outings with Patty (a friend who gets it and I can help her with her husband who has other health problems but mentally fine). Need to restart golf, but broke my toe. Should have been wearing my combat boots! I think it is finally better enough to try the driving range.at least. Watching what I want to watch on tv. If he doesn't like it he can go somewhere else.
Back to trying to consider this a job. Kind of difficult since it is not a job I would take voluntarily. Which is odd because I liked working in adult protective services better than child protective services back so many years ago. Have been interested in geriatrics since high school. Thought I might volunteer with hospice if I got bored here.
bhv, i get it, get it, get it. remember i was and old AF First Sergeant. I took E1s to O6s down wished I could could switch places for a few days. oh, I have it easy capare to you. hardest thing yesterday was givining same 30 answers and clipping her toe nails and seizures. No poop. Elizabeth is right even maybe your not poor enough like me uo have to find a way to take care of your self. wackin weeds will not be enough. Also, you say physically he is good. I would think this that this poop sign indicates that another failure will occure soon. hope, hope, theres hope.
Thanks Myrtle. I visited some daycare places and don't see him liking that. I'm going out with Patty today. Will put on western tv shows for him. Should be ok. Until its not.
Yeah, Rodstar -- a different kind of hope we have huh?