Two nights ago I was outside and all of a sudden saw the moon and my heart literally stopped. Then, it restarted a few seconds later when a I realized, oh, I’m safe now.
Was going over my estate plan to update instructions and found a journal I didn’t remember keeping. It was from 2012. Sounds an awful lot like what oakridge is going through right now. No doubt about it, this is an awful disease for both of us. All we can do is the best we know how.
Oakridge, keep the little one close. I had a little dog and the coyotes would mimic her voice every night. I was always surprised she never fell for it and stayed close to me, thank goodness.
This is the latest letter sent to the investigator titled "it never ends":
Got a hold of Omnicare. The two prescriptions on the bill is for decongestant ordered by doctor on 3/28 sent out on the 31st. I have not been told about these and when I took him home on the 31st nothing was said to me about them. When Beth got a copy of his medicines on the 3rd the decongestant nor the ordered acetaminophen were on there. They are still stonewalling me, not being truthful with me.
I just spoke with Anita and she will see if they are giving it to him which they should not be since he never was congested. When I was there the 28th he was running a temp which I got them to give him and ibuprofen. When I called the next day and visited the 31st they said he was fine, had not run a temp. Do they think I have money to pay for unnecessary medications? Why did they have to order more acetaminophen when they already had some?
On the 31st the day I found him poopy and brought him home they never said a word about him being congested and had a prescription coming. My question: HAVE THEY BEEN GIVING HIM THE DECONGESTANT AND ACETAMINOPHEN EVERY DAY ALONG WITH ALL THAT IBUPROFEN? If so, no wonder he is not eating, losing weight and so out of it.
The decongestant is on auto order, next on the 25th. I asked Anita to make sure they cancel it. Art will cough from his GERDS which is a different cough from a cold cough. Treating a GERD cough as a cold cough will not help. He use to be on an antacid everyday but he doesn't need it unless triggered by foods like spicy, salty, sugary drinks, or greasy foods. At home I would give him a tums which usually took care of it. I know there if it is not ordered on a schedule they cannot give even a tums.
Home is not a good place for him, but I may not have a choice if this keeps up. Glenn keeps saying they want to earn my trust back but they sure don't act like it. I don't know how much longer I can take all the lying and or deceit.
Hmmmm, I wrote a post and went back to another page to see if I'd already said it and lost the post. Guess it wasn't that important.
I miss my husband so much, something on tv this morning reminded me of a trip we took but he can't remember. Sometimes he says he does but it's obvious he doesn't. I get so tired of being the only person in the house - knowing there are two of us here. No one to share memories with - nor make new memories. Just try and get through the days...always so much to do...more hours in the day than hours in me.
Just learned our youngest son and wife, who had planned to move back here when they retired -- have decided to take early retirement (in 3 yrs) and stay in CA.
So guess we're back to our original plan, when the time comes see if we can hire a caregiver to live in our upstairs apt.
After being drawn to this site, sometimes twice a day, fore over ten years, I'm starting to wonder why I'm doing this and exactly what the attraction is. So I'm putting my little brain to work to see if I can answer that question. This is what I've come up with.
I see three distinct catagories here.
First,,,,,,,,.. The caregivers who are seeking help and encouragement. Second......The grief stricken who have lost their loved ones. Third.......;.The kind and caring helpers who have been through the above.
I personally have survived the first and second catagories and have been trying to fit into the third. Since I don't have much to do, I read every word in the posts and I find one subject that is crying out for attention in all three catagories. Especially the first two. The need for someone to listen to us. The need for comunication. I believe it's true not only on this site, but everywhare in our lives.
It has always made me happy if I could make someone else happy, so since I can't do much else right now, at least I can be a good listener. I'm trying..........
George I like to think of it as 'we are family'. Even though most of us have never met in person, we have been bound together as family by a common thread - caregiver.
George, I thought you were all packed and ready to bon voyage.
I invented a new category which comes between second and third which is floundering around trying to figure out how to make the weirdness stop and how to get back up again.
I never did figure that out but ended up mostly on my hind legs anyways. Then I wanted to tell everyone how to do that and realized I didn't know how. So I've been trying to put out things I pass in my travels that might be something of interest or at least a momentary distraction.
Speaking of distractions, I had a tomato lava eruption recently. I was preparing my spagetti and meatball dinner and long ago learned not to heat up sauce on higher heat and to always use a lid. So imagine my surprise when I lifted the lid on the gently heating tomato sauce and watched a glob erupt with vigorous force and take a shotgun tour of my kitchen. One second the world was normal - and the next second everything for several yards was covered in red, molten lava. I know because some of it landed on me and it was HOT!
Like the car that was or wasn't right there when the lunatic came through the red light, I happen to lift that lid as the hot tomato on the bottom was convexing and decided to go wanderlust. "Ok then!" I yelled slamming the lid down. The pasta was boiling. The meatballs were simmering in the frying pan. And I had an entire kitchen to clean including the walls, the stove, the door, the floor, the counter, the cupboards, most of the stuff on the counters, and me - I even had some in my hair.
That wasn't the most astounding thing around here recently by a long shot. My next door neighbour came out of hibernation. He looks like Jesus Christ on a bad day. Long sandy hair with a full beard and a look that has seen and been places. He started up his riding mower and sat on it a while. Then appeared to realize the grass hasn't started growing yet because it's mid April, and went back into his den.
It's like that around here. Motorcycle man has become Vespa scooter man. He cheerfully zooms around the city legally blind. Well, cheerfully in the same way you might be passed by a Grizzly on a Vespa growling at your stupid walking skills. Done it for years. Not a single incident except that one guy he ran over and then punched out. They're great friends now though so all good. Honk honk.
I'm not the strangest person I ever met but I do worry sometimes just how far out there I am now that I have a life without restraints or responsibilities. I pay a few bills, I buy a few groceries, I feed the cats and I'm done. That's not a good idea because I can use up three eternities without blinking and really shouldn't be allowed to be on my own.
It's such a comfort then to look around at the other zoo animals and realize I'm perfectly normal. Fellini did a bit on that. It was in some ways one of his lietmotifs. The sane being insane watched by the bored in the asylum. The thing is that can just as easily be seen as film noire as it can slapstick, because life isn't some jaded, black & white thing anymore than it is the three stooges. It's all the things at once.
I'll tell you a couple of things about climate change. The earth is in one of the coldest periods on record going back 600 million years. The normal state of Florida is to be 200 feet under water. The amount of carbon in the air is less than most of the last half billion years. Without man's interference, the ice age that is due moves from certain to probable. Not something we hear on the 'news', but as I said, that's why it's called news and not information.
Listening to a lecture on all this by a climatologist is one step in gathering enough information to realize there's zero point in worrying about climate always changing.
Lecture: Orbits and Ice Ages: The History Of Climate Dr Dan Britt, University of Central Florida, 55 minutes
I try to be in George's third category. I'm not sure if it helps anybody or is just kind of annoying...to keep saying...hang in there everybody. There is definitely light at the end of the tunnel and a life after Al Z. Heimer goes away and we get through the bereavement misery. I've had to re-invent myself in many ways, but I'm still here, and happier and more at peace than I've been for years. Truthfully, I still wonder how I survived it--the Alzheimer scourge lasted 14 years for us--but here I am. Eating well, keeping an (almost) normal weight, getting enough good exercise and sleep, fiddling with my outfits and what make-up to wear, hanging out with my dog and all my friends, singing all the time. Who knew this would ever be possible?
I'm in George's first category :) After thinking it was getting better, I'm beginning to spiral down again. Every day more work is added, the stress is pulling me down. My sleep pattern is all messed up - I don't want to run away - I want time to stop for awhile till I can get caught up. I can get away for a few hours, but come back to everything the same. What I want is some time alone in my home. I can't clean, I can't get basic repairs done, he is always sitting here and because of his tinnitus he wants the TV on all the time which is something I can't handle. I can't even talk to him without having to find the remote and turn the sound off - which interrupts his program. He can't remember these from morning till night and watches the same old thing over and over and wants me to sit right here with him. I hate it - I need some quiet time - but I want it in my house!!
He is declining but can still function - would fight me to the death if I tried to get him to go someplace so I could have a respite. Won't even go to the senior citizen center because he can't remember how to play cribbage or cards or anything else. No memory at all but constantly tells everyone that offers to help that he can do it. It's all my fault, as soon as he starts a project I want him to do something else. HA! I can't remember when he did anything at all. BUT -- he won't leave me alone so I can do it. A cabinet door was sticking, I saw the problem and he decided to come help. He ripped the door completely off, and there it's sat. Today I will have to pick up some hinges, along with dealing with the mower tires, getting the things we need for the animals. I can do a lot around here but a mechanic I'm not. He insisted again I take the mower to the shop -- which closed down last year and I can't find any place else. But I'm the bad guy here -- he can't remember the shop closed. Those small engine repair shops have gone the way of the dodo bird I guess.
I can't get him to go anyplace, not even church, he doesn't want to be around people. The only time he leaves the house is for a dr appt and recently he keeps at me to cancel them because he doesn't want to go. I'm not sure there is any answer. I wanted to get a lot of things finished before the kids get here on Fathers Day - but I doubt anything will get accomplished...it's constant, day to day, pressure?? I don't know the right word for it. I hate to get up in the mornings because I know what the day will bring. I think I'd stay in bed all day if I could get away with it.
Don't expect any solutions, just had to get it out. I feel like a volcano ready to erupt.
Oakridge - I feel ya! So much of what you just described is my husband to a "T". I am also in George's first category. It's a tough place to be for sure.
Maybe it is good you can't get stuff done. Let the kids get a good picture of your reality. Maybe they can take him out for the day so you can have some quiet. Would he wear head phones?
My computer is still not working. It did for 2 days after the new screen was put in, now is white again. I took it in, another guy finally got it to boot up. Came home but can't get it to so I can make sure what I want is saved - I think most is. The last thing is probably to reload windows 7. In hindsight I should have just bought a new one.
The "gray divorce". Saw this term in some online reading I was doing tonight on living with a partner with dementia. They were referring to older people caught in this situation who aren't thinking of legal divorce, just want to get away from it all. And the older you get, the more you just want to leave it all behind.
Art has been down the last three visits. I had to go meet with the director and social worker during my visit on Monday. I left him to walk the dog while we went inside where he could see me. He sat right there outside the window pouting. When we finished and I went outside he wanted nothing to do with me or the dog. He walk away from me, stopped and put the dog down which caused her leash to retract which scares her. I tried and tried to get him to talk or stay with me but he said to get away. Finally I gave up, took the dog out to the car and started crying. I want to think it is another stage but is it cause he is so sad there? I guess he refuses to shave which is why he is unshaven when I get there. I am going to have to take a razor and shaving creme in cause his razor doesn't want to cut the 1/4 inch whiskers around his lips. Hey guys, any ideas? He has a rotatory electric razor which I just bought so the blades are sharp.
They have no record of the decongestant or acetaminophen that was on that bill. Glenn the director is going to call (so he said) to see if he can find out about it. I checked Art's VA medical records which have no record of them ordered even though Omnicare said it was his PA that did. I also told Glenn to make sure they cancel that auto fill that is on the orders. He told me he couldn't, but I said 'they said you can'.
We had a meeting with the social worker there but not sure how much was gained. Glenn suggested maybe moving him to a closer place. The one he suggested I said does not take Medicaid as far as I know - said he would check on it. He asked why I choose them. My answer: because even after I said no, you and Ruth continued to hound me telling me how great the place would be for Art. After two months of more hounding I finally gave in'. Maybe now they will reconsider hounding people after they say no.
I did send him an email with questions I need answered, questions they seem to not have time to answer when I am there. Questions like: how often does he refuse to shower? How often does he refuse grooming like shaving and brushing his teeth? How often does he not eat all his meals or even at all? Has he been so depressed every day or just the days I show up? He said to send it and he would answer it by Thursday. I sent it Monday night but so far no answer.
I don't understand why I am having so much problems with facilities - am I expecting too much? He said normally any medication and treatments are between the doctor and the facility, that family is not normally involved. I guess I am suppose to keep my mouth shut and just accept - give them all the control. Maybe that is one reason of the complaints by others, too.
Yesterday washed my car - had to scrub loads of bugs off from the trips to see Art. Then washed the back and drivers side of the MH (sun was not shining on it). Was so sore and stiff this morning. Just finished washing the rest of the MH - getting stiff and sore again - time to go take more ibuprofen and valerian root! Got to use my new brush that extends out to where I can reach onto the top of the RV (12 ft to the top). With the old brushes I relied on Art to get the top 18 inches I couldn't reach. New brush worked great!!
Sage caught another bird but this time brought it in the house. Hopefully fixed her bird catching or at least make it harder - put two bells on her collar!
Finally got my computer to load this morning. Only thing left is to reload windows 7 which I will do if needed. They say the only they can think of is a software problem. I did think back where after the new motherboard was put in I did an update of flash. I called this morning to ask if maybe and if OK to uninstall - they said try it. So far so good - but we know how quickly that can change.
What to do? I feel like so much of a failure for now being able to just let go, to stop caring. He continues to be depressed and was aggressive towards residents today - according to the short answer I received from Glenn a little while ago. He suggested drugging him. I did send an email to his doctor that should be there in the morning when he comes in asking if we can get in for a check up. I have a feeling this depression and problems are due to me bringing him home that last time and the 10 days of high dose ibuprofen (600mg x 3). He has GERDS but it is only triggered by spicey, fat, or salty food or sugary drinks. But it would not take much for that much ibuprofen to cause problems.
WTF? Medications and treatment are between doctor and facility and family not involved???? Or even informed??? Not acceptable on any planet! I don’t think you’re expecting too much at all. I don’t have much experience with nursing homes or other facilities, but my experience is there are so many people with no family to care or visit the staff is usually very happy when someone is involved. Especially with dementia where the person can’t communicate effectively. The family knows them. But at least Glenn is still talking with you so maybe he will learn how helpful you can actually be rather than thinking of you as a nuisance. Those are really good questions you sent him. Not a bad idea to wait a bit til that ibuprofen out of his system and see if things improve. I’m really hoping he starts to settle in. I know how stressful it is for you. It is only now, after Jim is gone, that I can begin to imagine how stressful it must have been for him. And he has no real way to try to make sense of what is happening to him. Very cool about the new brush for the motor home. Happy that worked.
When we had Mom in AL all medication decisions were made by myself and her PCP. The only role the AL had was to be sure they were properly dispensed.
Even when she became violent towards some of the staff, they called me, I called her doctor, the 1st thing he said was we had to get her off the ALZ meds, he had seen it before. (I'm in no way suggesting that for you). The AL had no part in the decision.
Yesterday I went to the support group at the Adult Day Care Jim attended last year. I didn’t know if they’d want me there since he’s dead, but they welcomed me and I felt comfortable there. This is the third one. I think I even helped one lady a bit, so was glad I went. The lady who usually met people and took them back inside had a really big smile and remembered my name and wanted a hug. The head nurse was working late and came to get a hug too. I really felt all warm and fuzzy that they remembered my name after so much time and were so glad to see me. I’ve missed them. They worked so hard to keep Jim as relaxed as possible.
The only RX medication he is on is sertraline - no AD meds. The other are acetaminophen, Vit D3 and melatonin. Right now he is probably not getting D3 or the melatonin cause the new doctor changed the strength and they won't use the old. D3 2000 IU from 5000 IU and melatonin from 6mg to 5 mg. I have melatonin I will take in tomorrow. If they did not give him him what they had, he probably is not sleeping either. They could have given him one melatonin which is 3mg but who knows. The D3 won't be here until Monday.
Charlotte, you are not too demanding. Your experiences have been below average. I don't see how they can have you in the loop for medications.
The change in D3 should be based on blood tests. There are dangers from too much Vitamin D. Him not having it for a few days shouldn't be an issue. I agree that giving him 3mg of melatonin shouldn't be a problem and probably better than none.
Remember Dr. Jekyl and Mr. Hyde? Or was it the other way around?
Fairly calm evening, morning was so so, he went out back as Dr. Jekyl and an hour or so later came back in as Mr. Hyde. Ranting and raving about something that I couldn't even understand. Everything we had talked about last night (a new belt for the mower coming today) was gone, he was screaming about what he wanted and got worse when I couldn't help him. I know he is confused about something...I offered to give him the model of the riding mower if that's what he needed and he screamed all he wanted was a #$%^&* piece of paper!!
How can a person change so much in the space of an hour or so? In the movies there is always a villain who stabs a needle into the victim and the victim immediately falls unconscious and he carries them off. Wonder what that injection is? I could use a few to keep around for days like this.
He has always had a short fuse, blows up then immediately calms down but today I'm not sure what is happening and don't think I'm even going to go out back and see.
My granddaughter was off this afternoon so brought her zero turn mower over to do up our front and driveway. Went out to give her a heads up, told her grampa was behind the barn and in a real mood. She can usually handle him better than anyone. I went out to check later and she motioned me away. Later came in to tell me, his problem was he had an old, old mower that was broken beyond repair. So she asked him why he didn't use the new mower that was sitting there? He was so surprised. I kept telling him we bought a new mower just last year but guess he thought that was it. The new one started right up and off he went. Then came in to get the charger for the riding mower - he knew he had used it this morning and set it right there. I finally had to go to the barn and find it for him, he hadn't used it for weeks.
But he thanked me and said he didn't know what was wrong today, his head was so confused and he couldn't get it straight. I know when that happens he just keeps spiraling out of control. That must be a terrible feeling for a person who was once the "go to" person for everything, met with the governor and other politicians in a monthly forum - and now he knows something is wrong and he has no way to control it or get it back.
Think I'll go check on him and take a glass of cold tea.
It is amazing. Art was crying and in a bad mood when I got there. Finally got him to eat lunch after getting up to walk away crying. Oh, we were sitting outside of the dining room. I just waiting for him to come back. Finally he agreed to eat if I brought it out to him, which I did. Then took him in to shave him. Got almost all but some stubborn whiskers under his nose. But, he wouldn't shave I had to do it.
Found out the aggression yesterday was the other guy being the aggressor, not Art. I got the story from the maintenance guy who saw it, said Art was upset by it. I think the reason is his glasses are broke again. It would be the type of break if they were grabbed. The director comment today was "everyone has bad days". His email last night talked of medicating him for aggression but said nothing about it. I did call his doctor about his depression, maybe upping the sertraline. The maintenance guy, who lets Art help him says all he talks about is going home with me.
When I left two hours later he was laughing and joking some. I got one of the girl's. To distract him so I could leave. Don't know how he was after, if he remembered I was there, but nice to leave with him in a better mood.
I am busy reloading window 7. New motherboard and screen didn't solve it all, so that left possible software problem. The guy showed me how to save to google photos and drive, so did that last night before it went whacko again. Hope it works.
Update: Doctor suggested not changing meds now. Evidently the director omitted in his email telling me he spoke with the doctor, nor did he tell me yesterday.
Mary, I was just thinking about you and was going to email you to see if the surgery was done and how things were going. Glad it is over with--hope the pain subsides and that the problem is corrected now. Rest and be well.
Making progress each day. Fired the night nurse who turned off her cell phone so that she could sleep (she goes to school in the daytime to write her Canadian R.N. exams). Her caller then phoned my home phone number, which she didn’t answer either. Guess who finally did, stumbling out of bed to do so, while Sleeping Beauty lay on th couch in livimg room. She'd brought her own pillow and blanket. Pretty, young , sweet useless creature. Wished I'd had Charlotte here to run interference for me. Ended up cussing her out. Then, in the morning when I had a little more steam, reported her to her agency . I suppose she could report me for swearing. I will plead old age, pain and extreme aggravation.
Mary, hope you are feeling better today than yesterday, and continue to improve with each passing day.
The above post was a brilliant piece of writing: well-chosen words, terse clauses, and a seasoning of edgy humor. Too bad that dire, swearing-appropriate circumstances prompted it.
I especially liked, "She'd brought her own pillow and blanket. Pretty,young, sweet useless thing." I have a feeling that everywhere I look nowadays, I will now see "pretty, young, sweet useless thing(s)."
Am feeling better each day, thanks. No, I didn't want another nurse. My welder son Jim down from Nelson has been staying in basement suite for past week, and I knew I could call on him if necessary. It wasn't. Jim heading back to Nelson early in the morning. He's a pretty good judge, so I figure he must think I can be trusted on my own. Have a most reliable woman coming in 2 hours a day, and I'm getting Meals on Wheels. I'm able to get lots of rest.
Wolf, I’m feeling very groggy at moment after a long, deep sleep, but here’s an attempt: Surgeon said, “I was unable to do the surgery I wanted to because (his explanation was unclear to me and also to a very bright friend who was visiting me at the time), but your bowel will not collapse again. I’ve brought it up and sutured it to the sacrum (he must mean to the broad ligaments on each side of the sacrum?). I got the impression from him that I would have a better quality of life and less pain, although some weakened sphincter control. Me. “Is it because the first two surgeries went bad?” He explained the first two surgeries in detail. My conclusion was that the first surgeon had made considered, sound decisions that unfortunately didn’t work and that it was not uncommon to have failure. So I’ve reinstated surgeon #1 on my “Good Guy” list. Although not at the top. Before discharge, I asked the attending surgical resident if he could clarify for me. Me: “Does it mean I have a congenital defective bowel?” Him. “No. Did you have this when you were 72? No? Well, you’re 89 now. It’s old age.” I didn't get the surgery that would have restored me to new-normacly (and must confess I lost it when I heard this), but it promises to be better than it was.
I've heard tales that would freeze a soul and slime balls proclaim what they really don't know. I've heard morons denser than a block of wood and bright people explain me something real good. I've heard of lunatic asylums beyond dreary and bleak and of nimble toed hoofers dancing cheek to cheek. But I think that I shall never see a person selling old age to me, and that's not as odd as it might be, since I'd have throttled them, you see.
Well let me tell you something. I'm fed up with all these shoddy goings on and if I ever get to any kind of gates to anywhere I'm going to insist on finding the individual in charge and when I do, I'm going to pull down my pants, bend over, and (having spent years learning how) will speak my mind through the appropriate orifice. "Trri hrdrrr" is the name of that tune.
Don't anyone be offended. I didn't invent humor, tasteless or otherwise. The place is littered with it - politics for example. If anything could be forever, I'm sure the universe would be, but like the life forms and the stars, the universe has a limited time. Fat lot of good that does the poor schmucks who find themselves in it.
Let's hope that at least the pain goes away. You lived with that for months. And that it's an improved situation compared to what you were facing with that shrew. I mean doctor.