Aging and Long Term Care and the Alzheimer Association is having a class for caregivers. It is all about us - not our spouse or whoever it is you care for. It was OK. It is a 6 week 2 1/2 hour class - guess I will go cause it can't hurt. Today we were watching a video from a caregiver meeting Group Health had. The speaker told her she over heard a conversation on a plane where one person told another: it is like I had to "divorce my husband and remarry under different terms" to be a caregiver. I liked that cause that is what it is like.
The first two days of the month have been nice - around 80 each day. Almost got the water all insulated again for winter. Before I can finish, I need to wash the MH one more time, then take the 'Y' off the faucet to insulate it. Then see if I can get the porch done. We have a probably 3 x 4 deck we have carried around for years with us. I have 4 x 4's and 2 x 4's to make a frame for it to sit on instead of the concrete blocks we are using. It will be a lot easier to pick up and move when I want to get into the bays on either side of the door which the porch blocks.
The last month has had one problem after another. Family, doctors, pets. And then this morning my 13 1/2 year old dog had a seizure. She seems fine now, but she is going down a bad road. She has several other major health problems all getting worse. So this is going to get hard. I hate to think of life without her. She has always been my right hand man. She often seem to know more what was going on than DD or DH. All my fur babies are older. Two cats 16 1/2 and 11 and two dogs 13 1/2 and 13. We are all living on borrowed time. : (
Here is a youtube video of the model we have - same year except we have tan vs blue. Wish it were blue. Also, since we have lived in it for almost 11 years, the inside is worn out, the couch was removed and I have a desk and swivel rocker there. But we do have lots of space. https://www.youtube.com/watch?v=MxK6op8pcpA It is nothing fancy but it is home. I need to de-clutter but easier said than done.
Nice cause it rained all night sometimes heavy so the skylight in the shower area has all the dirt washed off it. Once I get the outside taken care of, I have a leak under the sink. I will find water in the pan under the faucets but can never see it leaking. I am wondering if maybe it is not a roof leak causing the floor problems but the sink leaking inside and finding its way over to that part of the floor. Regardless, I would love to replace the kitchen sink faucet but it has been hard to find a single handle faucet with a higher spout but I don't want one that pulls out and it has to be reasonable priced.
Rained all night and now the sun is out. Another beautiful day in the desert!
I really enjoyed the "tour" of your home, Charlotte. I was visualizing what you described (tan not blue, rocker and desk instead of couch)...and it just looks like such a pleasant, cosy way to live. There is really a lot of storage space underneath, too. I could see where the shower might be difficult for your husband...the shower door would get in the way of you helping him. I wonder if there is any way to remove the door and just have a shower curtain there on a tension rod. I like it that the shower has a built in seat.
Raining most of the day and cold here--but I did get out for my walk. It's 50 degrees F right now, raining, and going down to 43. I put the down comforter and flannel sheets on my bed--heavenly.
Ditto to what Elizabeth said. Quite enough room if you plan ahead and cut down on the clutter (which I have trouble doing). But I can see why you would have a problem helping your husband in the bathroom. It's really designed for one person and there's no room for you to stand next to your husband at the sink and help him brush his teeth.
Hi Charlotte, I really enjoyed the tour of your home. It looks very nice, and I SOOOOOOOOOOOO admire you for all the skills you have acquired to take care of it, plus look after your hubby. Its also nice to read your comments about the weather, the problems, etc. You are very interesting. Thanks for sharing. Margaret
Hb was watching the Sea Hawks tonight. He would look at his calendar by his chair, read that they play tonight then ask if he missed them! All he had to do is look up at the TV. Sad, sad, sad
I know the sad feeling, Charlotte. Yesterday was Hb's birthday. I went to visit and when I attempted to sing HBday he got up and walked down the hall. When will I ever learn? After 7 yrs since official dx and another 4 or 5 yrs before that I should have already learned. He has no clue so I just need to stop making myself sad.
He seemed to be restless all afternoon. I am wondering if the confusing is an indication 'sundowning' is finally come to visit'. It could also partly be the guy he has been walking with is leaving tomorrow - they are moving to Reno.
Hbs behavior is the same morning, noon and night. When I am at the NH in early evening it gets wild and crazy. I would guess that more than half of the 30 residents do experience "sundowning". Hope your HB can find another walking partner.
I joined another dementia group on FB. It is just starting out. It really bothers me to see people posting articles about supposedly 'cure' or ways to prevent dementia and AD. I know they are probably new to the world of dementia or maybe they are just gullible - hopefully new. I do take the time to respond letting them know that coconut oil, fish oil, aluminum (wow that is an old belief) - we all know the list goes on. We are proof on this site that education, exercise, and diet are no guarantee who will get AD and who will not. End of rant
Had the second class put on by the Alz Assoc and ALTC. We are using a book published by Legacy Caregiver Services titled: The Caregiver Handbook. Yesterdays topic was identifying and managing stress. Didn't learn anything new, but was interesting to be with other caregivers even if we don't all care for someone with dementia but our stress reactions and factors are similar. Stress Reactions: anger, resentment, impatience. One woman gets sleepy and vertigo when stressed which I found interesting.
Hb is driving me crazy with his glasses. He dropped them on the asphalt so they have a big scratch mark. Being transition lenses, which I hate and didn't want, it shows up more. He keeps trying to clean the scratches away. Last night he was wearing his old glasses which I had no idea where he found them. He could not find his current ones nor any memory of where they were. We searched everywhere. Finally he found the case in the cubby on his side which had his new ones. Evidently for some unknown reason he found the old ones and switched them. He has new ones coming from the VA that hopefully will not be transitions but it takes 2 months or longer - it has been a month already. Then I will get the holders so if they fall off they won't fall on the ground again - hopefully.
Charlotte, I know just the FB page you mean & I've noticed the posts about all the "miracle cures & preventions". I hate to tell them that most of it is just a lot of hooey. I ride it out for a while, but if it gets to be too much of that & not enough of anything else,I will have to "unjoin".
Dan is driving me absolutely nuts also. He seems super restless, or bored or something. He still sits on the porch when he can,but it does require a jacket for him (even though we have had some spectacular days here lately, he still needs a jacket). Otherwise, he's constantly roaming the house, especially the kitchen - always looking for a snack. He went through a bunch of bananas in a day & a half, a package of Oreos in a couple of days. I made brownies last eveing, he ate half of the pan before I could even get them into a container for the freezer. I've learned how to divide things so it isn't all gone in one evening. Sometimes, I think I have something well hidden - WRONG! If I make a cake, I bake it in two layer pans, then freezing one for another time, & frosting just the one layer "for now". Kind of thin, but it works - he can only eat about 2/3 of it that way! I'd like some, after all! Grapes go pretty quickly - I have to admit, around here at this time of the year they are delicious.
If this behavior keeps up, I don't know how I will get through a long winter like this - just shoot me now. I take more anxiety pills than I used to need - not a lot, but it's increasing.
Mim, have you had a chance to check out day programs for him? If you could get him to go, that might help--get him out of the house for a while at least.
Mim, My husband used to drive me crazy with this stuff, too, especially eating so many bananas. It sound like Dan is at the point where he needs a lot more structure in his day. I agree with Elizabeth that a day care program would be helpful to both of you. As far as getting him to go, many of us have dealt with our spouses refusing to go but we have figured out how to get them to go and to stay there for the day. We were fortunate because my husband qualified for a VA benefit that paid for several days per week at day care but our local Alzheimer's chapter also had a grant that helped people pay for a day or two a week. My husband went to day care for two years and I don't think would have survived if he had been at home.
All such good suggestions & helps - thank you all so much for your input. He just had another "little" accident that soiled his underwear, but everything else was okay. Never dreamed that I would have to be wiping my husband's behind!!! But you know, I just did it...it had to be done. Not something I want to do regularly, but I CAN do it!
I don't know what makes him "loose" every once in a while, maybe the bulking idea will work. Will check with the doctor.
What is it with the eating. DH ate 4 of the 5 bananas I just bought. He is also looking for sweets which he never ate before the dementia. He doesn't seem to gain weight no matter how much he eats.
Last night I was heading to bed when I stepped on a wet spot by the kitchen sink. The water was seeping out under the cabinet. I took the heater vent off and saw water in there. In the kitchen area the floor has been getting 'softer' for a long time. I thought it was the roof leaking or along the awning, but it has progressed even without rain. I also had a leak under the kitchen sink - the pan would get water in it but I could never get it to leak when I was looking. Thought that was it. The water is coming from the outside wall - either the hot or cold water pipe has a slow leak or it is the hot water tank. I am not thinking it is the hot water tank since when they get it a leak it 'leaks'. My thoughts are it is one of the pipes, probably the cold water since the water is cold. Problem is I can't see back there. The guy can't come until Thursday afternoon. If it stays like it is, no problem. I think for years it was seeping under the vinyl but for some reason is staying on top which is good cause now I know it is happening. Just when I save a few bucks for something special - you all know how it works! :-(
Yesterday I was going crazy with my computers. I couldn't load things, play online games or even games on my computer. I uninstalled/re-installed all my browser one by one, uninstalled Adobe Flash, Java etc - no results. Uninstalled my anti-virus I installed last week thinking that was the problem. Weirdest was games like solitaire on my computer would not work right. I could read post in FB or here but could not post anything. Then last night I managed to see a little on FB - a post by a local TV station that Charter had internet problems all day supposedly due to a fiber optic line out on the west side of the state. Thankfully all is working 'normal' today. I let myself get so stressed yesterday. All over not being able to play my games!
Other than that is it a beautiful sunny day. I will miss when it gets colder and we can't leave the door and windows open.
You ladies are lucky your men eat fruit. My husband will no longer eat fruit or raw veggies - if the veggies are in his salad smothered with Ranch dressing he will.
Yesterday I was going to try a different support group run by a woman, but never made it. The traffic was so horrible I detoured to the store, bought a frozen pizza and ice cream and came home. Why do they have them at 5:30 right during rush hour? Might be a smaller city area I live in, but out my way when Hanford and all the other businesses this way get out, traffic is horrible.
I wanted to try this group hoping the moderator would not be so stuck on getting them on AD drugs. The guy that moderates the group I have been going to pushing getting a diagnosis so they can get on the meds to slow the disease down. His wife died from AD and evidently he has been indoctrinated into believing they slow the disease down. It is one of my pet peeves.
Water leak he is 99% sure it is the hot water tank. Weird is the leak is on the top of the tank. I am wondering if when the guy installed it in 2008 he messed it up. Will find out when he replaces it. If he had a tank, he could have done it yesterday, but he didn't. So now he won't be able to get back to me until next week - haven't heard back the day yet. Thankfully the leak is not a gushing one, but it means the living/kitchen area in chaos with towels on the floor and the dishes from the lower cupboards piled on the table. This is when you find out how much you have stashed away. At least the floor and shelves are cleaned!!
What a pain. I hope he hustles with that new hot water tank. Do you actually have hot water? That's all you need, on top of trying to take care of your husband.
It is not turned on right now but I can if I want. I made him go to the park bathroom last night and take a shower. Of course he was done long before me - I was enjoying standing in the hot shower de-stressing!
Recently, with my work demands becoming lighter and my husband stable and content in LTC, I made some real efforts to climb out of the dark Alzheimer's cave and back into normal life. But the last two weeks turned out to be a disaster. (I will eventually share the details here but I am still too upset.)
Anyhow, tonight when I got into bed, I started to cry for the first time and put one of those square tissue boxes on the bed. Well, my cat, Lucy (a/k/a "Little Miss Muffet") jumped on the bed and stuck her nose in the opening where the tissues came from and, with her paw holding the box down, started to pull tissues out with her teeth, scattering tissues all over the bed! I could only laugh, but she ran away like the guilty party she was!
It reminded me of a poem (written by a man who was confined to an English "lunatic asylum" in the 1700s). Here is an excerpt:
"For I will consider my Cat Jeoffry. For he is the servant of the Living God duly and daily serving him.
* * * For he counteracts the Devil, who is death, by brisking about the life."
My little Lhasa, who passed away two years ago would come and cuddle with me when I cried. My Yorkie, Willy will grab his chewy bone and growl and jump from chair to chair making me laugh. He used to get Kevan to chase him but now if Willy sees K getting tired, he will lay down in front of him and not run. "Just pet me"
I have a friend and a sister who have been closely related to dog care for 25 years or more, have told me that some dogs and cats, are very responsive to our broken hearts and are real little caregivers. Your Lucy just wanted you to laugh not cry. She succeeded.
Lucy sounds like a little sweetie. Hope you are hanging in there, Myrtle. I'm sending support through ESP...if you are sensing invisible, positive vibes floating toward you...they are from me.
Myrtle, I'm writing this through the blur of an antibiotic eye ointment, but I want to thank you for this excerpt from "Jubilate Agno." (Yes, I looked it up.) Words fail, except thank you.
Today my mom would have been 93 - Happy Birthday up in heaven. Dementia and CHF slowly took her from us. I was her late birthday present - sort of. She wanted me born on her birthday. The doctor did not want to induce labor. Next day while he was at a football game he had to leave to deliver me. lol
I was always told, even teased about it, that he was angry and spanked me extra hard. Watch what you tell children even if it is a joke cause some children will take it to heart thinking they are bad, unwanted and/or a mistake. It took me until my 40s to get over the way that statement messed up my thinking about myself.
My mom and I had a love/hate relationship - mostly me. When you are one of 7 kids sandwiched in between, came at the wrong time (50 my oldest sister almost died from ruptured appendex, 51 my brother was born and almost died at 6 months from a blocked intestine) - then finds out she is pregnant again. Oh well. Life was often tough, but I would not give up growing up on a farm for anything.
my cat, Lucy, is my comfort. She can make me laugh, with tears running down my face. She is so spoiled. If my children had acted like Lucy, they would have been in permanent time out.
Finally got things accomplished today vs procrastinating. Finished up the hose, washed the MH and car. Hb was confused through much of it - had to pour the zip wax into the bucket and fill it with water cause he couldn't figure it out. He has always washed the upper half while I do the lower half - had to keep reminding him where to wash. He washed the hood and front of the car while I washed the rest of it. Oh well - it is done. Tomorrow I will drain and rinse the black water tank, then finish on the water line. I have a Y at the faucet - will remove and hook the MH water back up, then wrap the faucet for winter. Yahoo - then will be done. I also bought the 30amp to 15amp adapter and a 12 gauge 50ft extension cord. I am going to run it in through a window and plug the electric heater into it taking the load off the MH wiring. I have checked online and talked to people to make sure it would be safe with the heater. All said as long as it was a 12 or 10 gauge extension cord it would - all except for some jerk online that despite how much explaining I did, he keep wondering why not just use the MH wiring. Oh well, has to be one in the crowd!
Now my back is killing me. Breaking down and going to the chiropractor tomorrow. I feel my whole body is out of adjustment!
I also wish October goodbye, but I 'm done with hoping the next month will be any better. This October has been hard. I tried to crawl out of my shell but it backfired on me - it's really too tiresome to write about. The autumn colors lasted a long time and we had some perfect days, which made me stop grouching for a few minutes and admit that one could do worse that to live in part of the country that is picturesque for much of the time. Otherwise, all I can say is that I'm glad I have my cat. She's such a sweet little thing, except when she's not. I hope all your furry friends - Willy, Jasmine, Lucy, and whoever else I am forgetting - are giving you the same pleasure.
One odd thing happened last week. My husband's LTC facility (which is not a nursing home - it's a vets' residence with about 300 residents) has a huge Halloween party every year, with a DJ, loud music, little kids (grandchildren and great-grandchildren) running around in costume, etc. I went last year and could not believe it when I saw my husband dancing nonstop with the nurses and aides. I could not go this year and thought if they took him, he would stay in the background since by now he seems to have proceeded well into Stage 7. But the nurses reported to me that he was the life of the party this year, too, dancing, clapping, laughing, etc.! (This is the same man who refused to dance with me when we would go to family weddings!) I'm now beginning to think that he is not getting enough stimulation or physical activity.
My husband use to dance with me - use to go out every Saturday drinking and dancing. The day we brought the kids home (adopted brother and sister) it all ended. I could never get him to dance with me again nor go out. He kept on bowling, softball, etc. but I had to stop it all cause of the kids.
I agree he probably is not getting enough. Or something just clicked with the party enabling him to join in.
Today was spectacular here. A true Indian summer day with temps in the 60s and 70s and the remaining yellow and orange leaves falling down like confetti in the sunshine. I decided to take a ride out in the country, to the town where my family lived when I was an older teenager and a young adult. Our old house and the village it’s in have barely changed. Whether it was the beauty of the day or the memory of how happy I was then, I started to cry. The person I was then – impractical, studious, curious, full of goofy ideas – came into my memory full force. Even though I did not meet my husband until 20 years after that, that person is the one he fell in love with. Nothing is left of that young woman now. I’m a grim “caregiver” who pastes a smile on her face and always has a cheerful word for the other residents of the dementia unit. I hold my husband’s hand, smile at him, help him with his supper, listen to his nonsense talk, and cart his laundry back and forth. Even worse, I am full of facts and figures about dementia and I’m supposed to take pride in being an “advocate” for my husband. I hate the person I have become.
In case you wonder why I’m posting this under October, it’s because today (and, they say, all this week) was really an October day. I’ll crawl into the dark cave of November when it arrives at the end of the week.
Myrtle, that impractical, studious, curious person full of goofy ideas is still there. There is a situational thing going on with the Alzheimers caregiving, and you have grown and transitioned into that caregiver role. It may seem like it has taken you over, chewed you up, and spit you out...but I think you'll find that the day will come when you get yourself...the real you yourself, not the caregiver self...back, and you will be even stronger and better for going through the hellacious Alzheimer years. Sort of like tempering steel in a fire.
This may sound a little bossy (I apologize in advance)...but I think you should be patting yourself on the back, not beating yourself up. Just from your postings all these months and years, I can see that you are a strong and smart person with so much to offer...you've been a huge help to me on these discussion boards...and I think you're great.
Myrtle, your description of the grim caregiver role described my experience perfectly. Please know that there are better days ahead and light at the end of that proverbial tunnel......not to say there aren't difficult times but there is hope. As others have said, your insight, wisdom and encouragement have been a tremendous help to me and I'm sure to countless others. Please take care - as my yoga teacher always says 'if you do not have anyone to give you a hug, give yourself a big one'.
I waited a day to respond in order to assess whether I was just venting my annoyance or if I really felt this way. Well, I do really feel this way. I may even start a thread about it in order to hear others' experiences and feelings.
Thanks for all your kind words. Just to clarify, when I said that I hated the person I had become, I did not mean I had become a bad person - just that the person I have become (who is probably a better person than the "real me") is not the "real me." Elizabeth, You're right, I do feel that the caregiver role has taken over my true self. And I just hate that I've had to turn my back on my real self in order to deal with the challenges presented by my husband's illness. nbgirl*, I sure hope you're right and that there will be some light at the end of all this. All I can picture is being exhausted and grief-stricken.
I think that you will find you will still have the same basic qualities that are your true self, the "real me," and another dimension, a "smoothing out", in my case, off a quick temper, a development of more "kindness." A maturing, a mellowing — I'm still here, but with less baggage, more freedom, some burning away of the dross.
Myrtle - I don't think any of us will be the person we were, we can't after all we have been through. But, right now we are so tied down to this disease we/I can't seem to be anyone but a living encyclopedia about dementia. I know I know more than I ever wanted to. One day last week I was watching a guy from Fox News named Waters question people. This time it was to ask them what they feared. Interesting I don't remember anyone saying about being old and sick.. My fears now is that with dementia running in my family too, by the time hb is gone it will come close behind not giving me any chance to experience life beyond caregiving and marriage. That I will be poor financial and physically so there will be no life. I am trying to keep positive that there will be a life, but so often as I sit here it is hard.
Charlotte, That's a good description -- a living encyclopedia of dementia. I marvel at your knowledge and your ability to understand all these complex concepts. I can see how this can happen, though. Before my husband got sick, I would read about fun things like politics, history, plant origins, garden design, etc. But now it's all-dementia-all-the-time and I resent having to use my limited brain space to store dementia information. Like you, I have dementia in my family - my father had it and his mother probably had it, too. After seeing what my father and my husband have gone through, I have absolutely no intention of living through the experience myself. I hope I have a few years of lucid life after my husband dies. I'll have no one else to be responsible for (except for my cat, Lucy) and I think I will have enough money to support us in modest comfort. (If we run into trouble, I can grow vegetables and she can catch mice.) But I'm not sure my physical health will hold out; the stress created by this dementia monster is taking a lot out of me. If it turns out that I don't have anything to look forward to, at least I can look back on my life as a single person, which was often lonely but fairly interesting, as well as my marriage, which had a lot of love and laughter.
Mary, I do think that this dementia experience has made me a better, kinder, and more mature person, but as far as I am concerned, these virtues are NOT worth what they have cost me. As Abraham Lincoln supposedly said about the Presidency: “I feel like the man who was tarred and feathered and ridden out of town on a rail. To the man who asked him how he liked it, he said: ‘If it wasn’t for the honor of the thing, I’d rather walk.’”
Yesterday, a friend came over. She has had a difficult few years financially and in other ways. Without knowing about my recent experience, she told me that she and another friend had taken Wednesday off and visited a charming little tourist town in the nearby mountains. She said that while she was sitting on the front porch of an inn, enjoying the perfect weather and sipping a glass of wine, she had a meltdown.
Her analysis was that she had endured years of stress by walking through life with blinders on and focusing on survival and that letting her guard down for a day allowed all the bad feelings to invade. I realized that this is exactly what happened to me. My day trip down memory lane was a dangerous one to take. What I was mourning on Tuesday was not really the loss of my identity, but the fact that my husband is a prisoner in crazyland and I am miserable about it. The only way I have been able to deal with it is to keep the blinders on and to put one foot in front of the other. So no more trips back to the '60s and '70s, or even back to October.
I think that these kind of "meltdowns" along the way help us come to terms with what has happened and are helpful in relieving the pressure. It all has to be dealt with eventually, and it's better in small pieces. I never fought it, but let it happen.
You're right, Mary. We all have to let go sometime. The problem is that this was supposed to be the day I was going to do something for myself - the old "take care of yourself" routine. It just ended up depressing me and tiring me out.
It sounds like it just wasn't what you needed at that time, Myrtle. Don't stop investigating and experimenting with what nourishes you and brings restfulness and some measure of peace. Sometimes it isn't what you expect...you may find that it's just those quiet moments with your cat...or browsing around the Internet...or just vegging in the house in your grubs. Maybe cruising the antique stores and then having a nice lunch out. Or going to a concert of music that you love. I was going to say: Set up an aquarium and just watch the fish. Ha-ha...Lucy might have some objections to that one!