October already. I am so sore today but not as bad as last night. Since it was suppose to get below freezing last night figured I needed to get ready. I decided not to cut the 25ft water hose down since I already had the heat tape to fit it. The procedure is: wrap foil around hose, tape heat tape on, then cover with the foam pipe insulation tubes. I am one short so need to buy another. The theory behind the foil is it supports heat all around the hose instead of concentrating it on just where it touches the hose. Ran the heavy duty (I think 14 gauge) extension cord through the window that I use for the electric heating, then sealed it up. Put the plastic on the screen door which I found last winter makes a big difference since my door is warp so doesn't seal good. Got bubble wrap on the ceiling vents. I like the clear bubble wrap because it keeps cold out/heat in but still lets light in. I just have sticking the bubble wrap to the windows which works good to keep some cold out. Then decide what I am going to do in the bedroom slide.
Went to see Art on Saturday. I need to have a talk with them because I was told his laundry is washed separately but evidently they are dumping everyone's together. Problem with that is his clothes don't get back to him. He has 3 pair of pants that sort of fit but Saturday the only pair was the one he had on.
Today I think I might go see the movie Overcomer. I am surprised it is still in the theater. Today all movies are $5.50. Last movie I went to was 'I Can Only Imagine', before that was the movies 'RV'. So I don't go often but this is treating myself.
Beautiful day here today--sunny, breezy, warm--leaves starting to turn, and leaves and cabbage butterflies and a few monarchs sailing around in the golden, breezy sunlight.
Bonnie is going to give me such a smack--but I'm having trouble getting into The Goldfinch book. Very depressing descriptions of New York City life--nothing like the real NYC as I know it. And the writing is so slow, heavy, and wordy. Sigh...bhv, I think I am just not intellectual enough for The Goldfinch. But I'll keep trying.
Charlotte, that is really annoying about Art's clothes. Especially if they have his name marked in them. But it happened with Larry's clothes, too. (Why do facility staff forget how to read the minute they walk through the door?)
I have had books like that - some I give up on others I keep plugging away. I like when they give the background so you have a picture but come on, you don't need to use half the book to do it!!
Has anyone read The Guernsey Literary and Potato Peel Pie Society? My sister recommended it to me, but the strange title put me off for a while. I thought it was a wonderful book, and had one of the most romantic scenes ever. Evidently there is a movie, too, but I didn't want to see the movie and have it change my image of the characters.
Mostly I read non-fiction now, but I love the sensation of falling into a good new book and getting away from everything for as long as the book lasts.
Historical fiction - I love it especially Christian historical fiction. Bodie Thoene wrote many about the Jews. I never realized what went on for the Jews before Hitler took over. Also love Gilbert Morris.
Went to the movie 'Overcomer' today. So glad I went. I loved it, even cried in it.
Elizabeth, I hope you don’t hate the whole book. It took me awhile to get into it and I nearly gave up on it, before they move to Las Vegas, but am glad I stuck with it. It’s really a different kind of story for me anyway. But, like I said, it is the emotions it evoked that are sticking with me. Might not be the same for everyone, obviously. My brother stuck with it and is happy he did. He’s not going to see the movie til his wife reads it.
That potato peel society book sounds interesting. I read one with a weird title like that involving sweet potatoes I think, and it was a real hoot.
It’s just after midnight, but I went on the library website to look for that potato peel pie book, and it was there! I borrowed it and downloaded it and read the first few pages. Elizabeth, you might want a break from the Goldfinch and try this one. I’m already charmed. But more will have to wait til tomorrow. I love being able to borrow library books from my sofa.
Bonnie, I did read the Guernsey Literary and Potato Peel Pie Society--an excellent book and well worth a look. I believe the reason it is the only one the authors wrote is that one of the authors died. The movie was good, too. And I'm not going to give up on The Goldfinch. I've heard too many good things about it not to read it. I'll probably give myself an "assignment" to read 25 pages a day or whatever, just to organize my mind to keep going.
Hey Charlotte, I went to the movies today, boy what a change. Restaurant at the entryway and little tables, like a casino, where you can order food or liquor right from your seat. Seats are all leather recliners. Felt like the country mouse gone to town, LOL. Saw Downtown Abby. Loved it - had no info about the series or movie but it was great in that it was a real change from reality. No blood and gore, just pure entertainment. Was a little confusing since I had never watched the series so didn't know the characters but enjoyed the break regardless. Cats is coming in December and we've already made plans to go see it.
Yes they were advertising CATS during it. I know my MIL who died in 2001 talked about the broadway hit which I assume the movie follows. I am thinking she had a VHS of it but not sure how she saw it because she never did broadway. Maybe it was a local play of it she saw.
Arrived at 11 to find him crying and throwing his pillows at the bed. Asked him what was wrong which he said he didn't know. Then he says something about missing me and he loves me. I got him to shave then took him for a haircut. The younger woman was cutting it but he was complaining about the cold water she was spraying on his hair. The older lady that is aware of his condition told her to go put warm water in it. Then I said something (was sitting across the room), he asked what I said and she said your daughter said ..... I did not correct her! I was telling the lady at Taco Bell who has worked there for a long time, think she is the assist manager. She thought I was only in my 40s like her - was shocked when I told her I would be 67 this month.
Went to lunch at DQ, stopped by Paula's for a few minutes then went to Costco. Went back to Rosetta but had to come home to fix his belt (needed a lighter to melt the end) so brought him with me. Came in, started straightening things, took my recycle cardboard to the dumpster, the did some sweeping outside. Stopped by the people's motorhome that are visiting from Yuma then took him back. Was hanging around until dinner but he fell asleep on the couch. When he did that the dog came to me and we went out the back. I am tired!! Hopefully he sleeps well.
He left his coat here so will go back tomorrow. I have concluded I need to go more often like every other day instead of leaving 5 days between visits. He is still too emotionally attached and evidently remembers I had not been there a while.
DH and I have some medical tests scheduled for later this month. As we're getting up in age, this morning I researched at what age you can stop having some of the screening tests. It was a real eye-opener. It seems like a lot of doctors want you to continue to have all the screening tests done pretty much forever, but recently more medical research has shown that after a certain age, it's doubtful that some of these tests would turn out to prolong your life. It's a different age for different tests, but it gives me ammunition for turning down tests I didn't want to have anyway! And now I know that if a doctor gives me grief about either of us not having a certain test, that there is a documented valid reason to decline.
Not only are they not necessary Jan, some can actually be harmful. Dh is 82, couple of years ago we received notice of his scheduled colonoscopy. Our deductible for that is $400 so I called to see if he really needed it. Our Dr said at his age a colonoscopy could do more harm than good, and to always check with her if we received these auto reminders.
When I arrived around 11 they told me he was pretending to be sleeping and not get up to eat breakfast. When I walked in I knew he was not pretending. It was a repeat of Sept 5th - low heart rate, slow breathing. I went and told them - they say they didn't know about what happened before. Not sure about that.
About noon he turned over, few minutes later woke up. Hospice it coming tomorrow. The facility nurse wanted to call them in since it happened again so soon. When I left he was up eating lunch. Again, there was a big part of me that didn't want him to wake up. The facility nurse is heading there - I had to leave cause my phone was dying and I was hungry.
I honestly wonder now how many of the times in the last few months when they say he won't wake up to eat this is not what was happening?
Updated: just talked to the nurse. His heart rate is all over the place. So will have meeting with hospice in the morning. That way when he dies will not have to have police and coroner called.
Hi Charlotte, I'm so glad that hospice is coming in. Not only will you get the benefit of their expert advice , they will also focus on making Art more comfortable, which I know has been a concern of yours.
Yes, I hope Hospice will open his case, after they do their assessment. Keep us posted, Charlotte. I ended up dealing with two Hospices in northeastern Ohio. The first one would not open the case--yes, he was terminal, but not terminal enough. They were looking more for cancer-type patients, with a very definite prognosis. With diseases like Alzheimers and some others, you know the patient is going to die, but there's no way to be definite about when death will occur. The second Hospice was fine with taking those more indefinite cases, and they admitted him with no hesitation.
Ive never dealt with hospice myself, but my friend in AR, who I've mentioned recently is singing their praises. Her husband finally died on friday. I' not sure when hospice took over but she said it made all the difference for the family. They gave them a book that explained each stage of the dying process right down to the last couple of hours. Since he had recently been moved a couple hours away they are trying to find a support group for her closer to where she is living, plus been calling to see if she needs anything. The memorial is Sat but with major storms moving in tomorrow there is no way I can make the 3hr drive down there and back.
Several of the things she said, like not eating, reminded me of things you've mentioned Charlotte. I hope hospice will be a good move for both of you.
WHAT IF I NEVER …... Recently I've been spending a lot my time going through the old blogs that I had shared with my alzheimerspouse.com friends while I was going through the sad dementia journey with my dear Helen. I always composed them in WordPad and they are still there in my list of documents. Reading them brings back all the memories of what I went through as my Dear Helen's caregiver.
Those stories are like a dream that never really happened and as I sit here reading them, I'm wondering what my life would be like right now if I had chosen to just send her away to a suitable rest home and free myself of the horrible caregiving burden of those sad and painful years.
Would I still have the love and respect of my family and friends? Would I have a good opinion of myself? Would I still be the same happy GeorgieBoy that I am today?
Yes … I still visit here every day and marvel at the skill and fortitude of all you regulars.
Glad you do visit George. Always enjoy hearing from a family member.
He was excepted into hospice. The 65 pound weight loss this year would have qualified him, plus the heart problem didn't hurt. I am thinking the heart problem is mainly due to the lack of nutrients since he is not processing it despite eating. He was awake today when I arrived, guzzled down his root beer I took him. I could not get him to shower but did get him to change his underwear and pants. The 32 waist I bought fit him perfect - would stay up even without a belt.
Last night I was thinking how I wished we could go back 12 years and continue our 'retirement' years dream of traveling and workamping, being my Mr. Fix-it, doing stuff around here he is suppose to do. But, it can't happen.
I can't remember what I posted and then deleted, but then I thought it was trite and unnecessary. Now, I remember. I'd had a miserable few days, and I was cranky, and I guess I was spilling it all out on you guys. It was really nothing spectacular. Have been on an antibiotics for 6 weeks — drops ,ointments and now oral with side effects — for an eye infection and was having a hard time dealing with everyday online transactions. Then when I tried to sort it out by phone, I ended up with someone who spoke rapidly and in an such an affected way, I couldn't understand half of what they were saying. Frustrated is what I was/am.
Charlotte, I have followed your journey with Art wondering how I would be doing if I were in your place. My husband Dave was diagnosed at the the age of 66 in 2014 but we got along well until early 2018. We had ups and downs but I was able to work and he was retired. Then in a 5 week time span he took me to work one day and that afternoon was in the Geriatric Psych Ward, then transferred after 2 weeks to a large Columbus OH hospital and 2 weeks later he was dead after spending 4 days in Hospice. I always thought he would end up like Art in a care facility and at least I would be able to see him. But, after following your journey I know that Dave's path was what he wanted. I am so sorry to know that so many are going through this. It is so hard to put into words how devastating this terrible disease is. You are in my thoughts and prayers.
Mary - you are welcome to vent anytime you want to. We are family here and we don't mind. When I get people I can't understand I ask: for them to slow down cause I can't understand a word they are saying; ask to speak to their supervisor or ask to speak to someone in the US if they are not located there (it is our legal right to ask to speak to someone in the US). I was trying to talk to a woman one time and could not understand her. Asked where she was - Louisiana. Told her I am not use to the strong southern accent so she needed to either slow down or transfer me - ended up being transferred.
DRA - I realize it was a shocker, but am glad your husband went fast. I was thinking the other day coming home if he goes soon it means he will not have time in diapers. He is still continent which is good. Yes, he has peed in the closet but I told the admin I think it is more he doesn't know where the bathroom is (which she had never thought about) - the closet door is right by his bed. Yesterday she put a sign on their bathroom door that hopefully will help since both him and his roommate will close it if left open.
Got down to 22 last night but stayed nice and warm in my bed. Between my heat and the dog I don't think I will even put the electric mattress pad on the bed. I have an electric lap blanket I turn on to warm up the foot of the bed before I get in it which is all I need. I had the furnace at 60 but the first time it came on was around 5 am. I noticed because the vent is by the bed - I woke up hot and had to throw the blankets off for a while.
Ummmm there are people working with Alzheimer’s who had never thought about them not knowing where the bathroom is??? Don’t they get any training? One of the first things I read was that it is handy to put a picture of a toilet on the bathroom door. They can respond to pictures long after the ability to read is gone.
But alas, they also forget how to do it. My poor husband would go in the garage and pee in the trash can. Sometimes he’d be peeing in the sink right next to the toilet.
I can relate to the Louisiana story. Was stationed there. When shopping out in town the way they talked was sometimes so upsetting I’d leave the items on the conveyer belt, say something in Spanish and just walk out, never to return. Thank god the base was basically a city unto itself. Sorry if people live there. I’m sure there are good things about the state. We did like eating at the catfish farm. And that is where I met my husband. So there is that.
Mary, certainly vent all you want. That’s what this place is all about. Doesn’t matter if it’s not Alz related. We all care deeply about you.
And DRA, so sorry for your loss. It’s really hard and shocking even though we are glad if they go fast. Mine was just fine (other than Alz of course) and then he was dead. I still can’t wrap my head around how it happened. Like, I asked the doctors how does Alzheimer’s just tell the small intestine to stop working? But like Charlotte says Art is eating but not getting nourishment. Don’t know why I would think Alz would only affect the conscious parts of the brain. Why wouldn’t it destroy the autonomic systems too? Just never thought of it that way before.
Thank you, Charlotte and Bonnie, for your kind remarks. Much appreciated. I did get in touch with the supervisor by email. She then phoned me. As the company, old and respected, is losing business, I suggested that they make their on-line order site more user-friendly and that they train their new employees — those whose first language is not English — to speak more slowly. I'm afraid it's a pet peeve of mine that people seem more careless when speaking. Even the announcers on CBC mumble and slur. Of course, it doeesn't help that I have a hearing problem and am getting old. But I was feeling cranky that day and let it fly. Lost it. Always feel sorry when I do that. Wish I was more like the characters Maggie Smith portrays and just let the sarcasm drip.
Mary good for you giving it to them. They probably needed to hear it. Personally I think too many of the customer service representatives think they are a step below god. And they don't consider the person on the other end of the line may have hearing problems, comprehension problems when they speak fast, or not use to their accent. So don't beat yourself up over it.
Had it out with my daughter, again, last night. Things have been going fine for the last year but she got really upset because I was not happy with her plan to buy a miniature pony to have inside. She says the local school is selling it and her boyfriend told her she could buy it because she has always wanted a horse. She also has ant farms, cats, bunnies, and who knows what else. She went ballistic texting me - how she can type it so fast is beyond me. On Sept 5th I told her hb was in the dying stage which I guess she took to mean he died. I asked her if she has that little respect for her that I would not let her know when he dies. I finally wrote her an email I guess rehashing the past of how she blames me for all her problems when she is the one that took off 12 years ago - was planning with my sister to sneak off from WA to TN without even telling us after we paid to fly her home to escape abuse, found her a shelter where she was getting counseling, working on her GED, would help her get a job and apartment. She claims we never helped her even though I watched my grandson almost every day because he was cutting teeth so had a running nose and day care would not take him; took her to doctor appts, store, etc. How my sister and I had been rebuilding a relationship after decades of estrangement and she ruined that with her actions, hurt her dad when she took off and has never shown remorse over any of it. She didn't even have the courage to meet her two other kids to tell them she was leaving, again, and say goodbye. I blocked her number so no more texting and she sent two emails which I just moved to her file without reading. I don't need her crap.
Good note - the 3 nights of freezing weather has passed so now according to the forecast have at least 10 days of only upper 30s low 40s at night. I washed my blankets and quit yesterday, put the electric mattress pad on, clean sheets and only my quilt on - my grandmother made the quilt for me graduating high school but have not used because Art did not like it (think too heavy) plus it is only full bed size but for one person and a dog it is perfect. I slept so comfy last night! I also got the bubble wrap on the outside wall and window above the head of the bed which I think helped keep it warmer.
Charlotte, all's well with the world. Harriet and M5 are adding to the nest and making mating attempts. Another season in South West Florida coming up.
Yep now if they can get those owls to leave them alone. Did you see the video from a few nights ago when they knocked them both off the branches while they were sleeping? That was the second time for Harriet - a few nights before it happened.
Hospice visited him today. I was surprised they did not call me first so I could be there. She actually tried but kept getting the number was disconnected. Problem: dialing the wrong area code. For here it is 509 but I still have my Oregon number which is 503! I guess things were fine until they went in to give him his medicine then he did a 180. She went back and talked to the hospice doctor who suggested risperdal to see if it would stop these moods swings. I told them fine, no problem with trying it. Mornings seem to be his biggest problem with mood swings. They also talked to the staff about liquid medicine since he fights taking his pills sometimes. Will talk with her on Wednesday about it.
I did find him a pair of 32/30 pants at the thrift store so will wash them, then take them in. Can't believe 8 months ago he was wearing 40/30. I also need to buy him new shoes. His shoes smell so bad from a combo of getting wet from the sprinklers/wet grass during the summer and not changing and/or sleeping in his shoes so they never dry out.
Took him a good 1000 calorie plus snack: apple fritter, root beer and snicker bar.
Last week I had to take DH to the doctor because of some new medical issues. I really like his new doctor, because she actually listens to us, and responds appropriately. His old doctor was starting to fall back on things like "well, a lot of older people have that", leaving me to research what to do to help with the problem. (Maybe the reason that a lot of older people are dealing with similar things is that their doctors are of no help to them!)
Because of all of DH's medical issues, I've had to do really in-depth research on many different conditions, medications, tests, etc. At this visit, as we were discussing the new medical issues, she said "since you are so medically literate, I can tell you this". And then she went into things that might come up, and what the next step would be in each case.
It was nice to be recognized as someone who has done their homework, but even if we haven't done countless hours of research to educate ourselves on as many different things as we can, don't we still deserve to receive all the information possible about what might be coming down the road?
It makes my blood run cold to think that a doctor might have information that they wouldn't share with you. (We already went through that once. Before DH was finally diagnosed, he saw a psychiatrist every week for a year--a whole YEAR--for treatment for "depression", and the doctor never even mentioned to him that he thought he had dementia until the day DH was summarily fired from his last job. I think of the different decisions that we might have made that last year, had we known that the doctor thought there was even a possibility of dementia.)
Sooner or later we are all probably going to have to make difficult medical decisions, either for our spouses or for ourselves, and we need all the information we can possibly get to do that. I don't like the idea that the doctor gets to decide if you get that information or not, because the decisions still have to be made.
You are so correct Jan - I think we all have dealt with doctors who think their word is gospel or we are just ignorant people. In fact it would be the rare and fortunate one that gets a good doctor the first time. I think we all need to take the helm for both our loved ones care and ours checking out what doctors say instead of taking it as the gospel truth. Before the internet whenever I got a prescription I would go to the library and look it up in the PDR. That psychiatrist sounds like a failure - just looking for the money. But, then maybe he is not that experienced in the area of dementia because I have heard many stories of sending those diagnosed with dementia being sent to a psychiatrist to help the reason things out - which we all know their reason button is one of the first to go.
We were fortunate the neurologist acknowledge how much I knew, mostly from this site, so treated me with intelligence letting me be part of the decision making. On the negative side his physician assistant at the VA thought I was dumb and tried to treat me as such, he was god but learned he was not. His new VA doctor was nice but since he is on hospice I have chosen not to use him since he is 60 miles away. I have not met the hospice doctor but he did ask permission to try risperdal to see if that would help. I respect him already even though I have not met him.
> It makes my blood run cold to think that a doctor might have information that they wouldn't share with you.
When my wife saw a neurologist after she had a TBI he gave her a clean bill of health. He ignored a whole host of problems because I guess he didn't think they were important.
It is almost goodbye October! Had a beautiful fall with cool nights and nice days so had great color from the trees to enjoy. We had strong winds from the north two days ago - blew all the leaves off my beautiful maple tree by my RV and loads of tumbleweed in from the field. I hate when we get those strong N winds because that is what happens - all the tumbleweed that has collected when the winds come from the south are blown back at us! Got them cleaned up yesterday - my lot and next door (they are gone on vacation). The 9 year old boy on the other side was helping so it was fun.Today I cleaned the leaves off the patio but there are still a lot on the grass plus all the big pine needles off the pine tree out back. I did rake an area cause little miss prissy Jas doesn't like walking on them. She normally likes to go down by our flowerbed to poop but now she won't which means I don't have to go so far to clean up after her!
Last night was 15, tonight suppose to be 20 - colder than normal for this time of year. Art has decided he doesn't want to go out in the cold which is good. His first two weeks on risperdol he gained 3 pounds but today he had lost the 3 pounds. I am the only one that can get him to shave. I have an ace to hold over him - no shave no kiss! He had not wanted to kiss for years but since moving to Rosetta he does. He needs a shower again so need to think of some thing to bribe him with. The last two times I had 'new to him' pants that I said he could only put on if he were clean.