This week our focus is on moving John's aunt's things out of her assisted living apartment, as she has moved permanently to the nursing home at her retirement community. We have one helper who is very good at sorting through things and making decisions. John is not so good at that but he did arrange several people to pick up things.
I've been trying to set up an alternative for our son, who is in his first semester of college and flunking out. I wanted to make sure he had another choice and doesn't have to stay home and deal with his father's illness unless he chooses to. And today I heard the good news that he is accepted to what was originally his second choice college for the spring. I'm hoping he has had enough time to learn his lesson, but I think a fresh start will be a relief for him.
John was complaining yesterday that I don't tell him things. Actually, I make a pretty good effort to keep him informed. Sometimes he forgets, sometimes I don't tell him because I don't want to spend the time and answer his questions and have him second-guess me, and sometimes I don't tell him because of my resentment that he doesn't share the burdens more. He said he thinks I am angry at him for getting sick. I said I am angry at what has happened to my life but he is just going to have to live with my strengths and weaknesses. I'm good at working things out practically, but I'm sometimes going to be impatient or irritated.
LEWY BODY DAILY JOURNAL
This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.
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Tuesday, December 15, 2009
tired
Wednesday, December 2, 2009
end of my rope
Moving was hell. We had two particularly intense two day periods, when the professional movers came and when some people with pickup trucks helped us finish clearing out the old house. Then I pushed to get as much unpacked as possible before Thanksgiving. I thought things were settling down now, or at least I could focus on my job, but now John's aunt who lives in our town has to move from assisted living to the associated nursing home. Clearing out her crammed apartment is going to be a nightmare.
Right now I need to go check on her. They didn't have a room ready for her in the nursing home until today so I had to arrange round the clock care for her. John was coping with helping her until the bad news came, but then last night he said he couldn't bear to go back.
Wednesday, October 7, 2009
hope
I had a very sore back Monday and Tuesday from preparing a garden and planting a tree Sunday, but I am much relieved it is much better today.
The roofer came today and did a minor fix that he thinks will stop the leak in our current house.
The plumber pushed down the tree that wouldn't fall and the two dead trees next to it with his backhoe and didn't charge me anything. Another subcontractor said the plumber just wanted to play with his toy.
The refrigerator that seemed not to be working did eventually get cold (it took more than 24 hours). I was too efficient and ended up paying for a service call for a repair person to tell me I should wait longer, but it is still good news.
The renovations on the house we will move to are beginning to get to the last stages. The painting isn't all the way finished yet but most of the plumbing fixtures were put in today and the appliances come tomorrow. The big thing still to be done is laminate floors on the lower level and sanding and polyurethaning hardwood floors on the main level and in the attic (where more oak flooring needs to be added in the new dormer area). The light fixtures should start to go in Friday or Monday.
The realtor says he is hoping to have an offer for us on our current house tomorrow. He doesn't know if it will be a good one, but if that did work out it would be a huge relief of stress. We had an offer earlier in the summer and agreed on a price but it was contingent on those people selling another house that has not sold.
Our kids are coming home for the long weekend and I have Monday off.
John told the therapist that he thinks the antidepressant (Wellbutrin) is helping him. I don't see much difference in his ability to get things done, but he seems to be a little more engaged--now and then he does notice that I have feelings. He started going to a specialized hand therapist and his hand is finally getting better. It will be interesting to see whether he wants me to continue to put on his socks and shampoo his hair as his hand recovers. He doesn't seem to mind being dependent, while I wish he tried harder to do things for himself.
Labels: family, home renovation
Saturday, September 5, 2009
I'm here
We had at least one of our kids home all summer but now they are both back at school. My daughter helped me a lot with decisions and shopping for the house renovation (a big help because John shows no interest). I taught both kids to drive (talk about stressful). The house renovations have been intense and are still not done--hopefully by the end of the month. Our current house hasn't sold, though there has been some interest. I've been posting renovation pictures on Facebook and instead of blogging Twitter has been about my speed (what I post there shows up on Facebook too).
John fell asleep at his computer and compressed the nerve in his elbow. The result was that he lost a good part of the use of his better hand. It is supposed to get better, but more than a month later it has improved only a tiny bit. He needs me to change his socks for him and cut up his meat. I wasn't expecting to be here already.
My tentative plan is to move the second week of October. Somehow. I am teaching a full load this fall.
I am grateful that John has been able to continue to take responsibility for helping his 98 year old aunt. She took a bad fall a couple of weeks ago and I met the ambulance at the emergency room, as I knew it would take him too long to get there. But he managed after that. Amazingly, nothing was broken and after a little more than a week at the nursing home she is back in her assisted living apartment.
Labels: changes, family, home renovation, kids
Monday, May 11, 2009
busy
Trying to get John's aunt moved this week. She holds onto stuff worse than John. And I spent much of today dealing with the house we are renovating. I'm glad I was there when the rental manager went through--I don't think the students will be getting their security deposit back. Tired.
Labels: family, home renovation, Lewy Body Dementia
Thursday, May 7, 2009
houses
The meeting to sign the contract for renovations on the other house just got postponed until tomorrow, when we are also meeting with the realtor to sign the papers and list this house. And John's aunt Florence got a place in assisted living, so she will be moving out of her apartment in the next few weeks. The assisted living place smaller, but it is still a one bedroom apartment, so I don't know how much stuff she will be giving us. The timing is actually fairly good in terms of needed to focu on her--at least we've pretty much finished getting this house ready to show. But more things to deal with...
Labels: family, Lewy Body Dementia
Saturday, April 18, 2009
John is away
Our daughter has a long weekend but I don't, so John flew up to spend the weekend with her and my mother. I miss the chance to be with our daughter, but it sounds like they are having a good time. One good thing that has come out of John's illness is that he now gets along with my mother. He says now that he is diagnosed with an illness she is no longer so judgemental about him. I think she is less judgemental towards me too, so I attribute it to her moving towards Alzheimer's--she doesn't remember things that in the past she would have criticized. Anyway, my mother and John now seem to have made an semi-conscious alliance from their mild cognitive impairment.
I had a lovely peaceful day today. Made pumpkin bread, cleared out my closet shelves (three trash bags of clothes to give away), went to a wedding shower, stopped by to get Aunt Florence her mail, and took a beautiful bike ride with a friend.
Labels: family, Lewy Body Dementia
Tuesday, March 24, 2009
sadness
John said he wanted to go to the therapist by himself yesterday and he says he spent most of the time in tears. That his aunt had to go back to the nursing home makes it so much more uncertain that she will be able to continue to live the way she has been living. And that reminds him of the death of his father when he was in high school and of his mother (from injuries sustained in an auto accident) when he was in college.
I'm thinking of going onto an antidepressant myself. House renovations and then moving this summer, and putting this house on the market, seem like more than I can bear. And we may well have to deal with Aunt Florence's stuff as well. She is now wondering if she should move to the assisted living section of her retirement community, which would mean she would have room for much less.
Labels: family, Lewy Body Dementia
Sunday, March 22, 2009
spring break is over
My focus has been on our kids but one is now back and school and the other leaves tomorrow. I did look at my books with them and to my surprise I am able to imagine getting rid of half or more of my books. I need to call the person who was recommended to me to help us declutter our current house before putting it on the market. I'm a bit daunted because while I particularly need her to help John, I have a lot to do myself. Another person who knows how to trim the bushes to make the house look best is coming tomorrow, so I've got that task underway. I don't see how I can do everything that needs to be done, even hiring people to help.
Labels: family, Lewy Body Dementia
Friday, March 20, 2009
who knows
John's aunt Florence is back at the nursing home. John took her to the orthopedist, who said that the problem is arthritis in her back. But it was giving her so much pain she could no longer manage in her apartment with a walker. The idea is that with some rest she can get back to her apartment. But is this going to be the time she goes into a downward spiral?
I took our daughter to her first gynecologist appointment and met with the realtor about this house. His suggested price is what I was hoping, so that is a bit of good news. Much to juggle.
Labels: family, Lewy Body Dementia
Wednesday, March 18, 2009
complications again
John took his aunt to the local urgent care last night because she had so much pain. Urgent Care had taken an xray Sunday and said there was no fracture, but in the meantime they got her previous xray and a radiologist read them and found two partial fractures of her pelvis in a different area from the one in January. She seems to be managing ok at her apartment. John asked me to go this evening help him talk to her about getting more help. It turned out that John didn't know that she is already using some help from aides. But then again she had washed out her own underwear today. I stressed that I think the best option for her is to stay in her apartment with help from aides. She hated the nursing home unit of the retirement community so much.
I'm trying to remember that it may be true that if I don't do it myself it won't get done right, but that is ok.
Labels: family, Lewy Body Dementia, long-term care
Saturday, February 28, 2009
away
This trip has been somewhat restful, as I'm less involved with this professional society than with the other two (and also because I drove rather than flying). John took my suggestion and took Aunt Florence out to dinner and said that went smoothly. I don't yet worry about John managing while I am away, but I do worry a little about his spending money. He only spends money on audiobooks and wine, but he has very high standards in wine. I've tried a little to get some control, but he hasn't gone along. I suppose I should push the issue more and say what can we set up now so that it isn't a problem later.
Labels: family, financial, Lewy Body Dementia
Tuesday, February 24, 2009
feeling a little better
But it is all so complicated. The non-rolling desk chair I got Florence didn't come with the kind of arms I had ordered, so they sent a different, bigger one. Turns out she likes the first one better. Her scooter finally came and seems to be satisfactory (except it is hard for her to plug in) but I had to leave my class to help her because John had an appointment he had to go to. I'm not sure how that became the plan, since his appointment wasn't that important, but I thought having one of us there when the scooter came was more important than he did. I need to remember that even if it is true that if I'm not there it won't get done right, sometimes it is ok if it doesn't get done right. I'm still feeling very pressed; I have several high priority tasks to get done tomorrow before I go out of town very early Thursday morning.
Labels: family, Lewy Body Dementia
Tuesday, February 17, 2009
I hope it works out
Aunt Florence is back in her apartment--John and a student moved her. I dealt with the chair and scooter issues, but I left John to work on arranging an aide and it didn't get done. I'm also worried that he didn't remind her of the things the physical therapist told her not to do. She isn't willing to accept that she can't keep living exactly the way she was living. And he isn't willing to push her to recognize that. I just worry she will try to do too much and fall again.
I'm going with them to her orthopedist tomorrow because I don't think either of them will push the doctor for the information she needs.
Labels: family, Lewy Body Dementia
Monday, February 16, 2009
progress
John picked up the desk chair without wheels I ordered for Florence, though he didn't notice it was made up with the wrong kind of arms. He has arranged people to help him move her tomorrow. He was going to arrange for an aide, but the social worker told him the home health service would cover it and he didn't remember/understand that the physical therapist had said Florence would need more than that.
I got letters about our situation mailed to the college financial aid offices and got my first round of grading done. Talked to our daughter, who is upset about the death of a student at her school. I'm tired. We are doing the best we can.
Labels: family, Lewy Body Dementia
Sunday, February 15, 2009
making progress
I was worried about whether John and his aunt and her helper could get her apartment ready for her to move back this upcoming week, but the physical therapist was happy with their progress. There are enough things still to do that day for her move has been moved from Monday to Tuesday. The physical therapist says she can borrow a wheelchair but I've ordered a transport chair. John has a lot on his list to do tomorrow and I can't help much. I will rearrange my schedule so I can help him take her to the doctor Wednesday.
Labels: family, Lewy Body Dementia
Friday, February 13, 2009
how to prioritize
I ordered a chair for John's aunt, which she needs when she moves back to her apartment Monday. It was ready today but I didn't get the message, and I don't know what I would have done if I had. I don't have to be at every session of the conference this weekend, but it seemed fairly important to be there this afternoon. John didn't have time to go get the chair even if I had gotten the message. The store isn't open over the weekend (it is an oldfashioned office furniture store). Do I go pick it up Monday morning? It would disrupt my day, but I could certainly be back in time for my class. Tomorrow I should probably go to Florence's apartment when the physical therapist is there. I just hope that isn't at the same time as the session I most want to see at the conference. Should I cancel the commitment I have Monday afternoon so I can help with her moving back to her apartment? Or the commitment I have Wednesday so I can help John take her to the orthopedist?
Labels: caregiver stress, family, Lewy Body Dementia
Monday, February 9, 2009
too many different directions
We initially thought Florence would go back to her apartment this week, but the physical therapist said it would be better for her to go home on a Monday so it is tentatively scheduled for a week from today. But only if she can get her apartment cleared out enough to be safe. John arranged for someone who has worked for her before to help her, but today they didn't even get to the apartment (in the next building from the nursing home). And that person can only come for a few hours three days this week. I've tried to find someone to help John move some furniture for Florence, but he hasn't followed up on that. I don't know that he has the patience to work with her as she figures out how to rearrange her stuff. The whole project is the kind of thing where John is weak now--visualizing how a series of tasks fit together in order to get them done on schedule.
I don't have the time--even this weekend I'm committed to a local conference all day Saturday. I did call about her scooter, but the person I needed to talk to didn't even call me back.
Labels: family, Lewy Body Dementia
Saturday, February 7, 2009
done right?
John has risen to the occasion of his aunt being in a nursing home recovering from a fractured pelvis. He is organizing himself instead of just drifting. He isn't as patient with her as he expects me to be with him, but he is there every day doing things for her. And it looks like she may be able to return to her apartment sometime next week.
When she first was injured I wondered whether to skip a meeting that I had promised to be at, and I told myself that if I wasn't there everything wouldn't get done right, but that was ok. I'm having trouble holding on to that philosophy. John just left the clothes Florence had been injured in in a plastic bag from the hospital until I started gathering her laundry to do. When I put the laundry in our washing machine I discovered that her bra with breast forms was in the bag from the hospital. Realizing that now she is getting dressed she probably wants that very much, I told John that the plastic bag that was over one of the hangers was particularly important, to make sure to give it to Florence when he took her her clean clothes. I think I even told him why.
That was Tuesday. Friday he called me because Florence had asked where her underwear was from the hospital. I told him it was in the plastic bag over one of the hangers. I said I had told him it was important, to give it to her right away. He said "You know I forget things." I feel badly for Florence. But telling myself it was important so I should have done it myself isn't really realistic.
Labels: family, Lewy Body Dementia, memory
Monday, January 26, 2009
too many directions
I went to the nursing home this morning (at John's request) to meet with the dietician because John's aunt is unhappy with the food she is getting. And I went back in the afternoon after my teaching was done to meet with her doctor, who just got back from out of town. He actually said she might get back to her apartment in a month, it depends on how determined she is. Totally determined.
I'm teaching a three hour class alone tomorrow afternoon--the professor I coteach that course with is out of town.
An email came out this afternoon proposing a new curriculum that would abolish the program I run and replace it with something else, which looks like it could be a larger version of the same thing. At the very least, it could offer the same kind of opportunities for me and for the other professor who works with me. But oh, that is going to be a lot of work.
Labels: caregiver stress, family, Lewy Body Dementia