This is what I posted on Facebook with a picture of my sister-in-law and my husband:
Today, May 1st, is my sister-in-law's birthday. She would have been 66. This is the last picture of Carolyn (his younger sister) with my husband taken in 2010 at their father's funeral. He died from Alzheimer's Disease after a 20+ year battle. In this picture my husband (diagnosed 3/2008) and his sister (diagnosed 2005) both have Alzheimer's disease. They don't look like it though do they? She went to be with the Lord July 2014 after a 9 year battle with Alzheimer's. My husband is still battling it. This horrible disease does not care who you are or how young/old you are. We need to find the causes and cure now so no more have to die.
A heavy burden to carry Charlotte. I wish for your strength when I hear what you go through at times. It's important to raise the awareness of what this disease is and what it does. I hope for a big break that goes your way in the future. I think you will have earned one and I hope you get it.
Charlotte, that is a lot of family members. Do you know if your DH's family has the familial inherited AD or is it just an unfortunate cluster of cases?
On the note of 'causes and cure', I'm heading out with my family shortly to do the annual 'Walk for Memories' in support of the Alzheimer's Society. I've never participated before but thought it would be a nice tribute to my DH as the first anniversary of losing him approaches, and I'm very proud of my little team as we've raised $1,700 - it's only a drop in the bucket when faced with this monstrous disease but I guess every little bit helps. I genuinely hope there is some sort of viable treatment in the next decade or so.
His neuro tested for the Presenilin1 and 2 gene which he had neither. I guess just unfortunate family linkage cause his paternal grandmother and one of his dad's brother and sister also suffered from it. His diagnosis was based on neuropsych test and family history. On my side, my grandmother, 2 aunts, mom, and now sister and brother are suffering for it. Does not look too promising for me.
On the flip side, today is a beautiful sunny day. We had a good trip to see the two grandkids we still see, had one of the best visits. My grandson (age7) had a soccer game so to get there in time I drove 70 mph which I had to do - kills gas mileage! Art actually was playing some with them - them 'attacking' him until he had to quit due to a headache. Then we went outside and I played 'soccer' with grandson. Now to get my backside motivated to wash the car - brought back a lot of 'hitchhikers' on the windshield and front of car.
.....Recently I've been reading through some of the very first blogs that I contributed here and came upon the third one that I wrote entitled "The Other George". .....Below , is some of it which I contributed five years ago. ------------------------------------------------------------------------------------------------------------ .....She was in the stage of partial incontinence, where I had to dress her, bathe her, ect. She recognized me as two different Georges. Sometimes I was the Real George and sometimes I was the Other George. In the evenings we would sit on the sofa holding hands, watching the TV, and she would ask me things like "What is your name?" and I would tell her "My name is George". Then she would say "You're not George" and I would tell her "I'm the other George" and that would satisfy her. Then sometimes she would ask "Where's George?", and I would say "They called him and he went down to FDS". (FDS was the place he used to work) Sometimes she would ask "Are you married? Do you have a family? Do you have a car? How did you get into this house?" and I would always give her an appropriate answer and she would be content. With me playing the part of the Other George, we could spend a fairly nice evening together. .....When we were playing around in bed at night, she would say things like "I'm not supposed to be sleeping with you". and "What if George finds out about us?" And I would tell her "George won't care, he just wants you to be happy" And sometimes she would tell me about fun things she and George did together. Other times, she would tell me about times when George was mean to her. .....Usually, the Real George was the bad guy that made her do things she didn't want to do, and the Other George was the nice guy who sneaked into the house when the Real George was away. ----------------------------------------------------------------------------------------------------------- .....Now...... I'm thinking.....What a nice guy this Other George was. And now I'm realizing that he's still around here. I talk to him often and he offers me his advice. I'm never alone or lacking a close friend to confide in. .............................Kucky GeorgieBoy
I remember a time, really not all that long ago when there were two Lindylou's. Never did know when I was the real one or the other one. Now I'm Mum, or not really Mum. Lindylou seems to have disappeared. Most of the time She knows I care for her and take care of her. Guess that is enough.
I feel for you. But there are two Lindylou's. And there always will be so long as you breathe.
We called each other 'doodoo'. Only in private and sometimes it slipped out and we got strange looks. It came from Rowan and Martin's Laugh-In and it was said by Goldie Hawn I think. You doodoo she said to somebody and that's what we called each other the rest of our lives. Once in a long while I still call out 'doodoo!' into the silence exactly like I'm going to ask if she want's a cup of tea. She doesn't and I stopped drinking tea.
The theatre often uses the laughing and crying masks as an icon. Theatre actors look for extremes and complications so they can portray them. We don't need further formal training to understand those depths where pain and pleasure mix like oil and vinegar. Where you cannot touch the rose without also feeling the thorn's prick.
I didn't understand this when I survived caregiving, but I do now. It is far better to love and lose than never love at all. And while I walk this earth, all the moments that are that story live inside me. I value them because I lived them and I loved them and I lost them but they are still at this moment many of the best parts of my life.
Alzheimer's beat me down badly and took away the realization of my values. I have beaten Alzheimer's down now and taken them back. I'm still doing that. No one determines the values in my life except me. And I'm glad she picked me, I'm glad we had what we had, I'm proud to have been her partner, I miss her terribly, and so I came back to get these valuable things and remind myself of what they authentically are still.
I'm not disagreeing with what you said. It's true. But what I've said I think is also true.
Sometimes, someone will ask whether my wife still knows me. That's a surprisingly hard question to answer, because I've discovered that knowing someone really isn't just one thing. Usually my wife knows my face, I think, but she might struggle for a long time to recall my name, and she might get that slightly wrong. Rarely, she's known my name (she might call it out) but not recognized me when I answer. And of course a lot of what makes me *me* is lost to her now. A good part of the time my wife doesn't remember her own name.
In the end I usually say, "Sometimes my wife knows me, but less and less as time goes on." It's not really enough, but the real answer is so complicated.
Indeed RSA "...the real answer is so complicated."
I will never forget the first time I realized my husband didn't know it was me, his wife, sitting at the lunch table with him. I thought I was prepared for that as I knew it might come. I got through the first set of double doors exiting the place, but burst into chest heaving sobs before the second set.
My husband's son coined a phrase I found comforting within all the sadness, "He doesn't know who we are Katherine but he sees us as a friendly face."
HB has his first Adult Day Service on Monday (aka day care). When he went for the intake a few weeks ago he really did not understand what was going on. I have not mentioned it to him about Monday but will Sunday night. I choose Monday because MWF they have more variety of people where TTH it is more just those with mental and physical disabilities. The lady said there are about 80 on MWF which does concern me because the place is not that big, but did say there are veterans with dementia that attend. The bus will pick him up at 8:15-30 and return around 3:40. If one day works out for him then I will increase to 2 or the 3 he was approved for. That may wait until fall when there are less people for him to chat with outside here in the park. My concern there is they men, women, and unisex bathrooms. The unisex is multiply stalls which I assume is for the staff to help those that need the help. I don't want him going in there. But to get to the men's bathroom you have to go past the unisex bathroom.
I went to my second 'free' counseling yesterday. I am not sure I will go back for 3 & 4. I wanted to talk about what I was going through and she kept bringing up my hb. 75% of their clients are vets so she was pushing bringing him to their groups that meet where she said there are some that have dementia but it will give him a chance to be with other veterans. And what am I suppose to do for 2 hours since I would no sooner get home and have to return. No, sorry.
I had to suspend my PT. It was aggravating my knew injury which has been at a healing stand still. The doctor doesn't seem concerned about it. If I don't wear my compression sock my foot will swell up which is no problem when it is cooler but the socks are really hot in hot weather. Plus, the PT was not helping my shoulder but it did the hip ligament.
HB is still his same old ways in that he is sharing his feelings and concerns with others in the park - not me. I am so tired of years of hearing from others what he should share with me. I know that is a big reason why I can't wait to place him. I know it will have its hard times - has to be some feelings after 45 years together, but I am tired of his choosing other women to share his heart with and I get stuck with taking care of household and his needs. Sucker me all these years!
The other day a guy stopped by as hb was sitting outside cause he saw the Navy sticker on the car. HB can't remember the years he was in the Navy or what he did, but he can at times remember the ship. They were chatting when the guy asked what he did on the oiler saying he was a signalman. HB says 'I was too' but he was a boatswain's mate. He also can't remember his birthday and when asked how old he is, he tells people he was born in 1947 and let them figure it out. I didn't feel sorry that he could not remember conversations, but surprising to me I am hurting for him, feeling the loss, for these things of his past he is forgetting. So his long term memory seems to be going much faster this last year. His doctor might say it was taking him off the galantamine, but it was happening before which is why I stopped it which made no see-able difference.
Ditto to what Myrtle said, Charlotte. I hope it works out, so you get some time to yourself--I would really try to get him to go, even if it's not totally perfect over there. That's good that a bus picks up and drops off--one less thing you have to do. (Transport.) It's irritating that the counselor is using "your" time to try to hook him up with more services and more for you to do. Counseling for you should be for you. Don't they get it that you are the key to getting him taken care of? Sheesh.
Thanks, Mary, for the Mother's Day wish. I am hoping for some real estate, or an important jewel. (Joke of course--I actually got some flowers and chocolate-dipped strawberries, and an invitation out to lunch with the family. I turned down the lunch invitation--don't feel like wrangling the kids--eat meals with them all the time, so it's not like I'm missing anything. I want to stay home and read my book in peace--or in as much peace as Bandit will let me have. Naturally when I am reading, he thinks I am sitting there not doing anything--and should be playing Brown Bear or Purple Elephant with him.
Jazzy, Don't you have family members in Edmonton? I've been watching the news about the wildfires in Alberta and it looks like Edmonton must be inundated with refugees from the fire zone. I hope that your family and friends in Alberta are OK.
Charlotte, yes I hope your DH likes daycare. I felt guilty when I first brought DH. He really enjoys it though. At first he would ask why he had to go but I would remind him that they all liked him at daycare. We both need a break from each other.
Yes I lived in Edmonton for 16 years. This is not new, In 2011 we had another Town burned to the ground. The town is Slave Lake and like now many came to Edmomton. We had family that lived in Fort Mac but not anymore. My son had eight workers up there last week and some went to Edminton at the first evacuation but some went north to the oil camps but they were taken out at the end of the week and are now in Edmonton. Many have stopped part way and are in a small place called Lac La Biche. I guess living in Alberta is like living in Oklahoma. They have tornados that destroy towns Alberta has wild fires. We lived in a small mining town in the foothills at one point and I still can see the red from the flames as they were coming over the top of the mountain outside of town. We packed our truck with clothes and our dog kennel and were ready to leave. We could see the water bombers flying from the lake to the fire. It was really scary but then the red slowly faded and it was over. I don't think I will ever forget that time. My heart goes out to the folks in Alberta and Fort Mac. Slave Lake is still rebuilding after five years. I just doesn't happen overnight. One of the big oil companies up there sent in a plane to Fort Mac and evacuated all the people that were in the hospital to a hospital in Edmonton. I think someone said they lost their hospital. They will rebuild. That's what they do? That's home.
Well, him leaving was different. An RV near us was pulling out so we were distracted chatting with him. The bus was suppose to pick him up between 8:15 - 8:30. At 8:30 I walked down over so I could see if he came in since it is hard to find spots in the park. Then I saw the bus turn around on the road behind us (a service road more than anything). Got his attention and hb on bus. The driver said other drives told him to go to the back which he did, just the wrong road to the back! He still did not understand what was happening. He was the first one on the bus, the driver evidently is experienced with memory impaired cause he tried to minimize his confusion. I tried to make it sound like a fun day for him, that his sister really enjoyed going to her day services, etc. I told him he will have things to do and other people with dementia to hang out with. I guess a lot of today will be assessing him for his needs and abilities, but I hope it doesn't get him down. I hope things go well.
The reality of the disease I think is hitting me now - where we are in it. You all know this is a major step showing how far it has progressed. I still need to get a copy of my DPOA and make an appointment with the doctor to get the POLST filled out. I need to go to the store so maybe I will stop by the VA since making an appt by phone is horrible. It will be a weird day without him tagging along behind me!
Ex-DIL is moving - she got a job on the west side north of Seattle. That means our seeing the kids a week ago will be the last time in who knows how long seeing them. They will be a 5 hour drive away - too far for a day visit. I am glad she is not going for her masters degree and running up more debt - decided to get into drug and alcohol rehab counseling. He birth mother has abused drugs for most of her life so DIL has first hand experience. I truly hope this will work so she can be self supporting instead of using all these government programs to make ends meet.
I just called to see how his day was going. This morning he told them his wife kicked him out and sent him there. She said it was in a joking way but who knows. She couldn't remember if he joined in on the exercises this morning, but refused to play bingo (no surprise) and instead was sitting chatting with a guy. Guess it went OK. Will be interesting to see what, if anything, he says when he gets home.
Charlotte, I meant to say earlier that the staff may have a way to direct your husband to the men's room. I would just tell them that hat you would prefer he not use the unisex bathroom. I'll be interested to hear if the day care worked out. When my husband started at day care, he had a lot of resistance but he eventually got used to it. In the beginning I drove him but after a while he started taking the van and he liked it. I think it made him feel independent. In nice weather, he would sit on the bench next to our driveway, waiting to be picked up, and it just broke my heart to see him so childlike.
Jazzy, Your description of waiting to see if you had to flee that fire was so riveting I felt like I was there. That must have been so scary.
When she dropped him off the bus driver got out and said he had them all in stitches on the ride home, that she had never laughed so hard! So he was having fun. For the first hour he continually asked when he was going back although I don't think he was sure what it was. Anyway, I told him Monday. I think he was a little disappointed but not sure. I am definitely going to call and see about adding the other 2 days.
for me, seeing him on the bus when leaving brought back memories of taking him to the transit bus to go into Seattle for work. I think Jasmine missed him more. When we went to the store she was a bit lost of how to see out the window since she usually sits on his leg resting her head against the window. Otherwise she slips when I go to stop. She kept trying to 'fluff' the seat so I put the towel on there from the back seat. She fluffed it then crawled under it with only her tail sticking out!! She is happy to have daddy home.
Good news Charlotte, about day care. If anyone deserves a break from this dreadful illness, it is you so here's hoping that you can extend it to 3 days a week. That was a funny story about Jasmines' tail, she seems to have brought a bit of fun into your life. Best wishes, Cassie.
I phoned to extend it to he 3 days - MWF - starting next week. The case worker there was telling me as he was leaving he asked if he could come back. I really did enjoy the time away and was better with him afterwards. He has been more 'bored' which is another thing that made me decide to extend to the 3 days already.
My grandkids and their mom move today. I was talking to their mom last night, asking if we could meet them along the way to say our goodbyes. She said - 'you will see them again'. I reminded her they would be too far away for a day trip. Then she had to go since I called her late. I just told her that is the way it is, she has to take the job and take care of her family no matter where that takes her.
Elizabeth* suggested on another thread that spending time with nature could be calming and restorative (my words; her advice and good advice at that). I think, however, that Nature has gotten the upper hand.
Overnight an 8 sq foot area of the yard was totally dug up and destroyed by. . . my wildlife expert says a skunk. Now I know there are skunks about and tolerate them. They keep their distance and do service by eating insects, grubs, worms and moles and many other tasty nuisances (all of which I greatly appreciate). But really, this is too much. The patch will require major repair and who knows where Pepe le Pew will be dining tonight, or if we will come face to face when I walk the dogs.
Wildlife Expert advised that there may be a mother and I should be watching for her and her little babies following in a row behind. When she steps sideways, they step sideways. Very cute, he said. Very worrisome, I thought.
So now I am google searching the best way to get rid of skunk odor so I can BE PREPARED. And, elizabeth*, sometimes I like to lie in the driveway and watch the ISS pass - that seems like risky behavior now.
Do skunks really do that? Wow, what a pain. At least it isn't trying to share your home by living under a porch or deck, for an easy and convenient way to get into your garbage. I remember when I was a public health nurse in northeastern Dutchess county, NY, one of the villages was having a huge skunk problem under their town hall. The local newspaper headline was "Pine Plains Stinks." That was almost as good as the one they printed during hunting season: "Man Shot; Thought to be Turkey." No, I am not making any of this up.
I would just stand up to watch the ISS...so you can make a fast getaway if need be. And make some noise when you go outside, so the skunk will know you are there. Take a flashlight, too, and shine it around your area carefully--looking for those shiny little eyes. And stand quietly and listen for those skunk rustling sounds as it walks through leaves, etc.
Baking soda, peroxide and a few drops of dawn dish soap works great. A few years ago our cat tried playing with a skunk then came in the house. She went out quickly cause I had to go to work and the cat door was locked. I bathed her when I got home. It was the only time she ever had a bath and didn't fight it. We used the water from the hot tub to rinse her so it was nice and warm. For the shed that the skunk sprayed on we sprayed it with white vinegar which got rid of the smell.
Mix the following: 1 quart 3 percent hydrogen peroxide. 1/4 cup baking soda (sodium bicarbonate) 1 teaspoon liquid soap or dish detergent. Mix these together and bathe ("shampoo" in or rub down) the spray victim thoroughly. Be sure to use this mixture immediately after it is created, as it is unstable.
today is our 45th anniversary and hope he doesn't remember. I want it to just go by. He went to day care this morning. I decided to call it senior center - seems less confusing for him. Started off a little rough cause the driver told us he had to pay $3 for the bus ride. After a little arguing I told him I was going to call the center and in the meantime he called dispatch which set him straight. So off he went.
Thanks for the recipe, Charlotte. I copied it off, just in case. I think that all creatures have a right to live, no matter how much humans dislike like them. That said, too close is too close. I sprayed the spot with ammonia water so hope Pepe doesn't come back for another feast.
And, I personally think that anniversaries are the hardest. You are a good person, Charlotte, for seeing this through even though it is so trying and painful. Hope you do something just for you while Art is at the "senior center." There will always be little hitches in the day program, but keep your eye on the bigger picture; namely, the time you get for yourself to regroup.
That time in day care is so valuable to you! You will be able to deal with him more patiently when he gets home. The break while he is gone can do wonders to preserve your sanity. I am so happy for you to have some alone time while he is being cared for.
I can't remember if we've ever discussed what to call day care when talking about it with our spouses or with outsiders. In NY we called it "adult day health" or you could say something like"senior day program" or "senior center." The point is to use some term that doesn't make it sound like a pre-school program.
Skunks: My friend had skunks under her porch, and the wildlife people said to try shining lights in there all night. I think also if you put bowls of strong-smelling ammonia it makes them go away. For some reason, I think they didn't recommend the Hav-a-Heart traps...I think they said if you moved the skunks, they would just come back anyway--you had to change the environment so they didn't like it.
Skunks are nasty. My dog got sprayed one morning about 10 years ago while I walked her before going to work. They are nocturnal and usually come out right before dawn looking for food. Needless to say I do not walk at that time of the day anymore.
The skunk has been a good reminder to me about respecting nature. They actually do a lot of good, but their one means of self-defense has given them a terrible reputation. I am conflicted about how aggressive to get with my co-resident. Certainly, I don't want to get sprayed, and the yard destruction is annoying. But, drive down most any street and the destructive forces of humans are painful to look at; I watched a clip this morning about saving rhinos by sawing off their horns to prevent death from poaching. Drastic means to save a noble animal from human greed and superstition. The wildlife guy I consulted removes pesky critters, but he is in awe of all of them and their unique means to live and reproduce. I appreciated his reverence and tutorial. I have a powerful flashlight that I shine about at night when out - we also have coyote, raccoons, opossums, fox, and tons of deer. The opossums eat ticks so they get a free pass just for that. The coyotes are cunning and a threat to my dogs; they make me the most uneasy. And, yet, they are marvelous creatures in adapting to the urban landscape and I respect them for that. This whole subject helps me keep perspective during the AD experience. Not sure how, but it does.
I have a special place for skunks since I had a pet one as a child. Their parents had been killed and a friend found 5 babies on their back porch. We caught them, took a month to find a vet that would fix them, and kept one. I named her Stinkie! She was so soft and loving, followed me around like a puppy dog, was best buds with our dog who shared his food with her, would only eat meat with ketchup, corn on the cob had to have butter, salt and pepper, and because we ate green beans with mayo on them she had to have that too (my mom started that because by January we were so tired of green beans that is how she got us to keep eating them the rest of the winter). The next spring we were outside and I had to go inside so I asked my brother to watch her for a few minutes. He got distracted with his friend and she wandered off (should have put her in her cage or taken her with me). She came back a few months later - I assume probably pregnant- but we had a new dog. Since she had no way to defend herself he tore her up. :-(
Skunks would get under the house and barn. Dad would spread lime across each entrance around the foundation. That seemed to keep them out until weather washed it away. He would forget until that 'aroma' would appear as we sat watching TV! I was also reading about music keeping them away. They are after the grubs so maybe treat your yard with Sevin Insecticide Granules which will kill the grubs and is safe around animals.
Went swimming yesterday then the hot tub before taking a shower. Reminder: do pool before hot shower to cool down some!! It seemed to help my knee a little so will go again today. I lady that just returned from wintering in Yuma is going with me. She had a knee replacement last winter that has not gone well.
Went to the VA advocate today. Evidently my hb's SS is $3000 too much a year to qualify for anything other than his medical through the VA. That include day care. oh well!
Charlotte, What the VA advocate told you (that Art's SS might disqualify him for the day care) seems odd. I am pretty sure that the day care is part of the medical benefit. My husband received SS as well as a military pension and he was eligible for the day care benefit. Because of our income we had a co-pay, which at that time was $15.00 max per day.
UPDATE: I just looked it up. Here is what the VA website says about the day care benefit: "Since Adult Day Health Care is part of the VHA Standard Medical Benefits Package, all enrolled Veterans are eligible IF they meet the clinical need for the service and it is available. A copay for Adult Day Health Care may be charged based on your VA service-connected disability status and financial information." Here is the link:
Charlotte, Larry never went to the VA daycare he was eligible for, but what Myrtle posted above is what I was told also. It would have been a good benefit. I think we would have had to pay a co-pay of $20 or $22 per day. (In 2013).
I just watched Where Eagles Dare on Utube. The links for movies come and go and these days they have commercials. I just found Father Goose though, the comedy with Cary Grant and Leslie Caron. It's a fun movie with a bit of very light romance and a decent amount of fun set on a tropical island during the war. It's light fare though.
https://www.youtube.com/watch?v=Y6PIkn8D3tg
Don't forget almost all viewers have full screen mode (far right bottom button on the menu bar). The gear wheel icon usually changes the settings and this plays better in 720p. Too bad about commercials but you can safely skip them when the timer says so. Finally, you can pause this and don't forget almost any headphones even from old sony tape machines and discmans are generally a standard size. They likely plug directly into the front of your PC somewhere or there may be a jack on your speakers.
At any rate, I'm going back to watching it and I hope someone else gets a chance to if this sort of thing is your cup of tea.
Not a good day. The cooling unit went out in the frig. When we got home today it had defrosted. Later I was smelling something but thought it was hb tooting. Got up later and walked by the frig - the ammonia smell was really strong. Last 7 months: hot water tank, furnace computer board and now the frig. Only thing the frig is a lot more to fix. The repair guy is coming by tomorrow afternoon to replace the cooling unit but I got looking at prices online for new ones. I texted him and asked the price difference between a new one and repairing. I will have to check cause there is a recall on the frig due to problems of the burner cracking leaking ammonia and starting fires. I don't know if they will pay for the repair or not. Will look into that tomorrow maybe.
Ice chest. I put frozen in a neighbors freezer. She took out the RV frig and put a big three drawer frig so had lots of freezer room.
So I was a real grouch this morning. I looked over and saw some guys filling up our dumpster over the top with the styrofoam panel insulation. Our dumpster is the only one in the park that is always overflowing by garbage day (Monday and Thursday). They have two by the office that are always near empty. Told them to take the stuff out and put over there. They were not happy and I know they didn't take it all out, just the overflowing stuff. Now we won't have room for our garbage. Makes things worse cause for some dumb reason people over in the overnight spots will walk way over to ours cause they can see it instead of the two by them. I guess the white fence around makes it hard for them to know what is hidden behind! My big complaint with overnighters and the office - the office doesn't point out where the dumpsters are.
Went to check - they took about half out. So by tomorrow the dumpster will be overflowing.