Well I signed up for adult day care for hb. It took three hours to go through all the paperwork. She said it doesn't normally take that long. I guess I was too chatty again. I am telling you it is so weird to watch myself talking so much. It was very good I didn't bring him with me. He would not have understood any of that.
So we start on Tuesday. She thinks their bus will be able to pick him up on Wednesday. I thought I would drop him off and pick him up, but she said the bus would be better for me. So off we go into the wild blue yonder of a different way to live. I wonder if this is going to work.
I thought I did a good thing for supper. Made a turkey roast and stuffing. Used to be his favorite. I cut up the turkey into bite size pieces. He wouldnt take his tray in to eat so I put the plates on the dining room table. I have been thinking we'd need to try that soon. He kept mushing everything together so I finally scraped it all into a bowl. Then he kept pushing the bowl into the center of the table and taking spoonfuls from there making a bigger mess. Why is eating suddenly so difficult? Guess I won't be cooking this any more.
Cooking is becoming such a chore tryng to figure out something with no cheese, no onions, no beans. Make sure everything is in bite size pieces and mushed together in a bowl. Yuck! Can't cook hardly any if our favorite things any more. Still can do fajitas, except with no cheese or beans.
BVH - hope all does well. I just tell my husband it is bus day, sort of like when he took the bus to work years ago.
Been having 2nd thoughts on moving. Last night as I was walking the dog taking her poop to the dumpster, it dawned on me if we move he won't be able to take the garbage out. That is one thing he still can do since the dumpster is near us. If if an empty cereal box he will make a special trip to the dumpster. He also still goes to the office every day to check the mail. He won't be able to do that anymore. The other park is set up so people park their RVs parallel instead of backing in. There is a fence at the back of your lot as well as the sides. Majority of tenants fence off the front side along their RV and put a gate in. Unlike here where you can see people outside in their yard, you can't there. Not that I am that social, but hb will talk to people walking by or ones he sees when he goes to check the mail or we go walking. If I move, will I be isolating us even more?
Yes, I think that you will be isolating youselves even more As long as you can stand that guy next door who runs his motor, I'd stay put. Everyone knows your husband where you are now. That's a plus.
Bhv, I remember what my partner's doctor would call the "in-between stage" in between being able to remember how to walk, in between being able to toilet herself, in between remembering how to feed herself, in-between being able to remember how to swallow. It is really really tough the in-between stage.
One of the approaches I used was to fill my fork from my plate and poke it in her mouth, to see if that would get her started. With a verbal cue. "Isn't it good? I slaved over a hot stove all day to make this." Sometimes it would start her eating, sometimes it would not.
An approach the nursing home would do would be to fill the fork full of food for a resident and then let them carry it to their mouth.
Finger food also can work: chicken fingers, sandwiches that don't easily fall apart. Apples, peeled, cored and quartered. Orange segments......
My hospice nurse friend called last night and we talked and talked and talked some more. She has a variable schedule and I was trying to think of a good time to call her when my phone rang! Sometimes we have a psychic connection. She is suggesting I get some different colored bowls. And if food should be separate, put them in separate bowls and offer one at a time.
I keep remembering when you, Lindylou, couldnt wrap your mind around having to feed your partner. This feels like an in-between stage for sure. I find myself cutting things up into bite size pieces and dumping everything in a bowl. So far he seems to do ok with a spoon, sometimes a fork. And he does ok with hamburgers.
I have a huge collage of photos in the hallway. I was looking at the photos and remembering sitting in the jump seat of our KC-10 watching him fly, watching him teach someone how to receive fuel -the KC10 is a tanker that refuels others but can also receive fuel. It is an awesome airplane. How is it possible for a disease to rob such a talented pilot of his mind?
While I was on the phone with Cindy, hb came in cursing at me. I put the phone down and got him out of the room and settled back down. Cindy knew hm BEFORE. We've talked about how things are here now, but she had never heard it. She was shocked. But that was nothing! Then I walked by my collage and our wedding photo caught my eye. Where did that guy go?
I finally did it - did something enjoyable. I used the birthday money I received last October from my childhood girlfriend and went to the movies. I went an saw 'I Can Only Imagine'. Was a good movie. For me it had a Christian theme, no swearing, no nudity or sleeping around. The last time I remember going to the movie theater was when RV came out. Before that was Star Wars. I have a hard time validating the cost when eventually they will be on TV if any good. Had an enjoyable time except the sound was loud.
I did not feel odd being there alone either. I remember 8 years ago when I went to my nieces wedding alone I had to leave after the wedding was over. I just couldn't sit there alone and not cry. This time I enjoyed it.
Neighbors left for a few days taking their dog that likes cats. Sage got out when Art left at 9. When I went to leave at 10:45 she was up the tree that has real thick branches. Couldn't get her down so just left her. When I got home at 2 she was no where around. I thought she would come running out from under her step she hides under yelling at me for leaving her outside with no food - nope. I finally saw her across the street by the rv there. She finally came. She is filthy - has a lot of work to get herself cleaned up!
Fun is nausea for ten days because you can't tolerate the high-dose antibiotics but need to take them anyway. Ha-ha.
I couldn't find the ginger root that some of you suggested--would have had to go across town, and just didn't have the energy--but did quite well on peppermint tea and soda crackers. I took the last dose of the antibiotic Sunday night, and it is sooooo nice not to have that nausea any more. I'm still coughing and very tired, but the other symptoms are gone, and I feel that I'm on the mend. (This is now week six.) I go back to the doctor tomorrow--hope my lungs are clear.
Friends and family have been supportive and generally wonderful. I can't help thinking that this was Not the case when my husband was sliding downhill with Alzheimers. Where was everybody then? Now they are coming out of the woodwork to help me, and it is lovely...but we all know what happens when the diagnosis is dementia. I'm not sure what my point is...I'm just saying.
Another nor'easter on the way--we're going to get 5 inches.
Glad you are feeling better Elizabeth and hope the healing continues.
64 and sunny here - had the door open. Was so nice. I let Sage out this morning and she was all over the place. More Art tried to catch her the further she went. After 4 hours finally caught her - she must have been hungry. No more going out off leash. Our last cat when she went out stayed right around the MH. If Sage would do that, she could go out loose more. At least she didn't climb the tree again. She looked up at the birds in the tree like she was debating but didn't.
He was approved for another day of day care. In fact, if I want Aging and Long Term care through our county would pay for two days so I could have him going 5 days a week!
Hello My Friends ........ I recently found this little story that I had written about five years ago.
.... As I look back on the the dementia journey that my Dear Helen and I went through, I sometimes ask myself this question, If I could choose between being the caregiver for my Dear Helen or being the one with the dementia, and having her as my caregiver, Which would I choose ? .... I really don't know what it was like for her during that journey but I'll never forget what I went through as her caregiver. .... So for me, there is no doubt about my choice. I loved her so much, I would never have wanted her to go through what I went through. .... I would a thousand times rather be her caregiver....as I was....So can I be happy about that ?... Yes...One more reason to be happy.
I got notified for Jury duty Monday. Another thing to fight. I got scheduled for cateract surgery next month, the 5th and 19th. My DIL willing to drive but, DW wait time is now about and hour or less with me. Total surgery time near 2.5-3 hrs. She will go busurk. big problem. Can't leave her yet. will be a mess.
I got my husband excused for life. When I got mine 2 years ago, I sent a letter explaining I was caregiver to my husband who had Alzheimer's disease and can't leave him alone. Had no problem being excused. Most state when you are over 65 they won't push the issue. Of all the times I have been summoned I was only able to report once. We sat there for 2 hours waiting for the interpreter who never came and was sent home. The county I lived in only required a one day commitment. The state I am in now is 30 days.
the day of your surgery I would arrange someone there where you live to watch her - either someone working there or someone come in.
I agree with Charlotte about full-time caregiving being a reason to excuse you from jury duty. Even aside from that, though, is your own medical condition, which should be enough to excuse you from service. If you are in constant pain, you would not be able to concentrate.
In my state, we are lucky to have a strong elder lobby - everyone is exempt from service when they reach the age of 70, with no questions asked!
Here it is 75. This there last chance. June Ill be 75. Yoy also have to have doctor'S letter. I did meet deadline of Friday by going on line and filling six page form. New Mexico is tough. on call period was a six weeks or more. I used caretaker and my medical codition.
Day 3 of Adult Day Care complete. Thanks for thinking of me Lindylou. I haven't had as much free time for computer. Day one I was there for most of the time making sure things were organized. Then found out I took the wrong form to his doctor. They told me to download it from their website, but it was wrong. So I took the new one to the doctor office. They can fax it back. While I was gone he tried to escape and then was cursing at everyone and pushed a nurse around. Fortunately it was the nurse with the most experience and her husband is there with dementia too. So she gets it. She said with that sirt of escape attempt and volatile response he shiuldnt be on the bus yet because what if the driver is a small woman and he decides to get out at a stop while the driver is waliing someone else to the bus? So we agreed I would bring him and pick him up for now til he acclimates. So when I was half way there on Day 2 I get a call that the bus is at my house to pick him up and the driver is a bug guy named George. Turns out they started all new bus routes that day and the social.worker forgot she out in the request the morning before..... A bus broke down so it was very confused that morning. I finally met with George and the nurse, but hb can't go on that bus because it is small and they have a really big man on there who has FTD and doesn't understand directions and the others are afraid of riding with him. Can't put 2 big scary guys on that bus. I will drive him for now and we will.revisit the issue when things settle down. The nurse suggested I ask his dr for something to calm him down for the first few weeks. She says my hb is more likely to adjust since with Alz they do become accustomed to things with repetition. I have.confirmed that with the depends and other things. On Day 2 I picked up prescription for Haldol to be given as needed. It doesn't sound like I should give it in the morning because he is quite happy until lunch time. So they were going to give it to him with lunch and be watchful for side effects. But they need yet another form in order to give the med without me there.
The nurse said if I came at lunch time it would be ok to give it to him on their premises. I made a mistake and just figured the doctor would fax back the order they needed and if that didn't happen I thought they would call me. Well they just assumed I would come at lunch. Well whe. I got there this orning they were waiting with his badge and I just left. I went grocery shopping all by myself! I put the groceries away MYSELF, quickly and efficiently. I ate what I wanted for lunch and played my piano for awhile. I was kind of drunk with happiness at being all alone.
He tried to escape this afternoon. He has watched them put in a code and keeps trying to do that to open the doors. He didn't push anyone around though. I took the med home with me and will probably try it one day this weekend. But reading the literature that comes with it is pretty terrifying. The dr told me abut this one before. He said it is nit allowed in nursing himes any more because they were over medicating with it. But he said he gives it to his mother who has dementia and gets violent sometimes and it works very nicely for his Mom. He said it is gentler than some other things. So I don't know what to think about that. He is very happy to go there in the morning. Maybe I will just pick him up a little early next week. They have to give him a lot of attention in the afternoon. He played WII Bowling today! Imagine that.
Well I have to go start our evening routine. It is interesting that the time I spent there observing things has already modified my behavior. I am more calm, more confident, more matter of fact. Oh yeah **** no diarrhea in over two weeks!!!
The other day with the spam I just copy and pasted them.
Bvh - do happy to hear the first week went so well. And you were able to enjoy some time alone to breath. I remember reading bad things about Haldol too, but that was overuse in nursing homes. But, you can probably control the use better. After all, you don't want to knock him out, just calm him down. Great idea to experiment this weekend.
I have only been to my husband's day care once - the day I went for the interview. I have not gone to the parties they have for holidays. I know he has tried to get out a couple times but they deal with it. I love bowling on the WI game. We have one somewhere in the MH, just have not found all the pieces.
Bhv, Having time that belongs just to you makes all the difference, doesn't it? Even spent in the grocery store, cleaning house, working in the garden. You no longer have to be fearful or hyper-vigilent all the time. You can breathe. I am so glad the daycare is working. When my partner first started they wanted to shorten her days due to exit seeking and I refused. I too was giddy from having myself for myself for the first time in a year. Slowly extending the length of time he is there may well work for you. Don't short change yourself. While he may benefit by going, think wii, the main benefit is for YOU!
You are so right about the giddy feeling. I came in the house from grocery shopping and just stood there for several minutes just drinking in the silence (not that he is very noisy) and the absence of need to be hypervigilant. Oh my gosh. That hypervigilance sneaks up on you so silently that it just becomes normal. When not there it felt like an elephant stopped sitting on my chest.
Last night was weird though. He went to bed at 8:30. But kept coming downstairs wanting me to come up with him. I said no. He went up for 30 seconds and back down. This went on for a bit more than an hour. I decided it was good exercise for him if nothing else.
I restarted the Aricept today. When I reviewed my diarrhea logs I realized there was no change when I discontinued that last Dec. And it seemed like he list some cognitive ground after quitting it. So I will see what happens. Didn't want to start it while starting the day care.
They say after 2 weeks of being off, if they lost ground they won't gain it back. But who knows. Also sometimes they will give it to calm people down, so maybe it will so you won't need the haldon.
When I take the dog out during the night (she has to go every time. I do) the cat wants to go out. I hook her up on the leash where she sits on the porch waiting for us. I usually step on the leash to make sure I don't trip on it. Before we went to bed we went out, didn't make sure I was on the leash. Made it to the concrete before falling. My right side this time - knee, elbow and arm. Knee hurts more today than last night after all the walking around Costco and up/down my friend's two flights of stairs. Actually because of the bone spur the knee swells when I walk too much. I just hope it is sore from the fall. A couple years ago when I fell on my left side is when I tore the rotator cuff. Hope I didn't this time. When I came in I said something to hubby what happened and typical no reaction.
He seems to be getting confused: he was using the plunger on the toilet because it would not flush. Fact: you don't use plunger on rv toilets. He had the peddle down a little, enough so it was filling up with water. Told him to press it all the way down. Presto! Sure glad to see that. My fear was he had stuffed it full of TP. I knew the tank was not full because I emptied it this morning. I am assuming using a regular toilet at day care is causing confusion with how to flush the RV toilet.
Thanks for asking, Myrtle. Finished the antibiotic on March 18, saw the doctor on March 21, got the Pneumovax vaccination. Lung is still not clear. Getting another chest X-ray April 4, see doctor on Apr. 20 and pulmonary doctor on Apr. 23. Had planned to go to Palm Sunday services this morning, but was running a low-grade temp again last night (aaaaugh! So annoying.) so thought I had better stay home. Coughing is getting worse again, too. Will let the doctor know tomorrow morning.
I have never been sick like this in my life...just the occasional week-long cold or a "bug" like everybody gets. And I have no respiratory history whatsoever. This thing really came out of left field.
My brother had a similar battle last winter with pneumonia. I think he was hospitalized 3 times, just could not kick it. He had even had the vaccines. Thankfully this last winter he escaped it.
What's really aggravating is that I can't sing with the choir. That is probably one of the most important things to me--and I can't do it. Very frustrating.
The problem is that I am coughing so much. It would be audible all over the church and ruin the music. So that's why I can't even sit up in the choir loft and keep them company. (Plus God forbid I am still contagious and would spread germs to all those people.)
glad you can get that Charlotte. My life is spinning more and more down the funnel. NO break. She is going thru anothe no appetite routine again. Ate or nibbled last Friday. wants us to go to bed before 6pm. what has been created in this 24/7/365 trip?
Update: she never showed, no phone call. I left a message at the agency because they were closed. Oh well. He is happy - I am depressed.
Got the result of his blood work back. Cholesterol down from 230 to 190. Triclycerides down from 186 to 134. Go figure. Healthy body= dying brain. Me - healthy brain bad body!
Forgot to mention my frustration going to the VA. Here they are in the federal building which means you have to go through security to get in. No problem for me because everything is in my purse. For my husband - another story. He 'empties' his pockets but they always have to 'wand' him. Of course, how thorough depends on the guy on duty. Today he had a dime in his pocket and the metal eyelets on his shoes was setting it off. Emptying pockets is fine but taking his belt off is a hassle. The guy we had last Friday let him leave it on. Today the guy made him take it off.
Called Total Care - they say they did not get my message last night. My case worker quit. New one, Wendy, received message from the person that was suppose to come here early yesterday. Wendy never passed on the message, nor the other ones she had, to the scheduler. I told the scheduler I do not want to deal with Wendy - she is evidently not competent to handle the job. Was very apologetic but that does not help with the stress I went through. I told her it takes a lot of energy for me to psych myself into going and dealing with my husband's unhappiness with being left with someone. Until later in the night I did not realize how much I was looking forward to it, not so much the meeting but another chance to get away.
Part of the misery and frustration of dealing with Alzheimers is dealing with the "professionals" who don't really have a clue and who all too often drop the ball.
Still coughing, low-grade fever in the evening, very tired, night sweats. Getting another chest X-ray April 4, and see the doctor Apr. 20, and they're sending me to a specialist (pulmonologist) Apr. 23. You would think this thing would just run its course and be done...but nooooooo. Typical nurse--I'm thinking of other things it might be besides pneumonia--but won't look for more trouble until trouble looks for me.
If nothing else, I'm paying attention and taking much better care of myself. I pretty much gave up going to doctors or doing all the routine stuff because I was so busy with DH. After he died, I felt OK, so just didn't bother. So now I'm back to square one and doing all the basic screening stuff--had a carotid and abdominal ultrasound yesterday, am having a mammogram next week, have a referral for a colonoscopy--my friend Jean is going to drive me. My cholesterol is through the roof--the doctor says if I have any plaque on the ultrasounds, I have to take a statin. If I'm not showing plaque, I can try addressing it with diet. (After DH died, I just started eating full-fat everything, and lots of beef because I share it with Bandit. I can easily modify that.)
Elizabeth, I am worried that you are still having pneumonia symptoms, even after all those antibiotics.Do you think it could be a drug-resistant strain of the disease?
I know what you mean about just giving up while taking care of your husband. I fixed healthy meals for as long as my husband was at home but when he went into LTC I just gave up and ate junk for 3 years. After he died, I started eating better. The junk no longer appealed to me and I realized that I had only eaten it because I was exhausted and I needed food to give me energy.
Looking back on my whole Alzheiimer's experience, I realize it can be summed up by one word: exhaustion. If my husband had not succumbed to Alzheimer's first, I would have died of exhaustion.
The doctor said they hadn't had too much of a problem with bacteria being resistant to Levoquin, and also said it was in my favor that I've taken no antibiotics for many years--so my body has not been involved in any antibiotic-resistant issues. The problem is that Levoquin is not really the drug of choice, although he said it's pretty broad-spectrum...and of course they don't know what the causative organism is. He was limited in what he could give me because of my true penicillin allergy.
I'm wondering, too, if the stress and strain of the Alzheimer years has taken its toll on me--lowered my immunities, just broken me down in some ways that are not repairable. All that mental, emotional, and physical hardship over a period of 14 years--and then the grief and bereavement, and the heartbreak of the family issues...sorry to sound so whiny...but I do think it's all done a number on me.
I keep thinking of Mim...I wonder if she would have developed that cancer had she not had the misery of caring for Dan. She did a great job, but you could see what it was doing to her.
I agree that the stress does break down our immune system. I blame my cancer 4 years ago on it. I now all the physical problems with my shoulders and knees are a result of the stress. I am falling apart!
Just when I think I can get some breathing room - something happens. We flushed the hot water tank over the weekend but it was still dripping. Today I got into the bay where the socket wrench is that we use to screw the plug in/out. The bay was soaked. It was dry when we flushed the hot water tank. We have had a problem for years of a spot on the floor that is soft. Could never find the source but of course it is sealed between the floor and top of bays. Took everything out to dry it out. I had half the stuff out when hb came home. I made him finish pulling stuff out, then the shelving he built in there do. It all would have to come out Monday when they guy comes to try and find the leak, so why not now. The water is dripping down the electrical cord so I put a bucket under that spot. I also turned down the water pressure some. I have no idea how to get that board down and don't think I would - it has electrical and gas lines either attached or going through it. I was just about ready to call to schedule having a new a/c put in so I don't rot my ceiling out. Oh, to live in an apartment and have the manager to call fix things without costing me!
Charlotte, hang in there. most people have no idea how many things that can go wrong in a motohome unless they have lived in one full time.. we had 5 years. I do underststand your frustration.
I haven't been sick in 20 years. Dont know how to do this. I remember it somewhat from when I lived on East coast, but have never had coughing fits like this. The pollen count is high and high winds a few days ago did me in. I think it is allergic bronchitis. Got some Claritin and some decongestant cough medicine. That's helping somewhat. Dr out of town today. Hope I survive the weekend. What would hb do if I don't? I guess I could dial 911 and they could find me even if I am unable to speak. Everything is calm right now, but I have no strength.
Yesterday was end of week two in Adult Day Care. Driving him to and fro is getting to me. It is too much like work. The first week they didn't think the bus would work because of another large aggressive male on that bus and hb wanting to escape. This week they tried the haldol with lunch and he is more easily redirected. When I went to pick him up, several staff members said he was waiting for me. I asked the social worker to revisit the bus issue.
I went back to get the med from the nurse in case I need it this weekend and they had them coloring. She was trying to get him to sit and color a butterfly for his wife. To make it pretty for Bonnie. OMG! He was a pilot. An instructor pilot. He was chosen to take delivery of our new aircraft because he could fly it by himself if the General "taking delivery" couldn't do it and he had enough confidence to take the aircraft away from the General. And they want him to color a butterfly for me???? The last two days he came home with a sheet of flowers with a few crayon marks on them. He kept pulling the page out of his pocket asking me what it was.
I guess I will keep with it for a few more weeks. He is adjusting better, especially with the haldol. Will look into Dial a Ride, but I think it requires a doctor appt. I am too sick to try that right now. I don't know if this is good for either one of us.
I would try to get him on the bus. It is too hard on you, having to drive him back and forth. And I would definitely discuss the infantilizing of the activities. Somebody must be in charge of what they do--it needs to be appropriate to the person and their background. Drawing, colored pencils, painting--all are definitely things seniors might want to do in retirement...but there's a way to do it and a way not to do it. I could see coloring in aircraft in camouflage colors, or something like that. Or maybe there are different crafts they could work on. Hang on through the weekend as best as you can, and call the doctor first thing on Monday--or call his emergency on-call in case you go into respiratory distress or anything dire.
Bhv, Maybe donate a book from Barnes and Nobles with pictures and descriptions of planes and jets...... Then if they want to give him colored pencils etc., he could choose to draw pictures, mark the book up, talk with staff about planes.
I never wanted to know what went on at my partner's daycare. As long as she was not angry or having a behavioral issue, I figured her being in day program and away from me for that time was her job. We've all had jobs, may not have liked them all, but we put up with it.
Thanks for the ideas gals. I have a number of books that I could bring down there. He would enjoy looking through them more than the coloring. I was surprised to see him there. I thought he would just go sit in the room with comfy chairs (Wolf!!!) and listen to music. But I guess he paces and goes walking around looking for me.
On Wed when I picked him up she said they were interviewing him about flying.
Good that they tried to meet him where he was with his interest. I like the idea of taking in books that interest him but make sure you do it knowing you may never see them again - someone could grab it and tear it up. I can't find anything to interest my husband. His dad use to color and cut pictures out of coloring books. No luck :-( And like lindyloo I don't ask what he does at day care.
When Aging and Long Term care were working on the day care, one of the things was get authorization for Dial A Ride since the transit system picks them up. He has a lifetime pass for it and I can ride for free. He had a new driver one day who asked for his $3 when he got on. She didn't ask for his pass which is in the front pocket of his wallet, just the money. I would think her paperwork would have the info. He was so confused. He had to dig his pass out. Thankfully 'The Arc' which uses the dial a ride buses but they say 'The Arc' on them, pick him up. Their drivers are much better adapt at dealing with 'not normal' people. So I would work on getting approval. If I had to take him he would not go. It is about 20 miles away. And yes, even getting up to get him off to day care is like a job.
He woke up coughing. Of course, when he coughs sounds like the world is ending!!!