This has been the scene in the living room for almost a week now. In preparation for our move to San Antonio I have asked He-Who-Sleeps-Alot to go through stacks of papers that we moved here two years ago and have not been touched since placed on a book shelf. It is very slow going and I'm in a quandry. He is going through and reading them all and enjoying the memories or is he? I can't tell. I can only tell that so far very little is being thrown away. Many of these pages are duplicates. Do I just go in and pitch them while he is sleeping? In prep for the move here my son helped quite a bit and found our marriage certificate in one of the piles.???? What was that about?
The community in San Antonio or at least our part of it now will not be ready until the end of November. I refuse to get worried about it as there is nothing I can do but wait. We are going back on September 27 for another gathering of the future residents. I so want us to get connected with some folk before we move in and we enjoyed the last gathering. The group looks much more active than what we have experienced here. At each visit I hope to get a better picture of what life will be like and what activities will be available.
I am so going to miss my poetry community here. Yesterday the Gulf Coast Poets hosted Mutabilis Press and their most recent anthology, Untamed City, for a reading. I was one of 12 reading and it was such fun being back with my tribe. I had a reconnect with a dear fellow poet who lost her husband a year ago to dementia. Once a caregiver I think it creates a special bond with others who have had or are having similar experiences. Geez, it's everywhere! Hardly a family that hasn't been touched in some way by dementia of some form, Alzheimer's or Lewy Body.
We have been meeting He-Who's twin brother and wife for fish tacos every Sunday night for several weeks now and He-Who so enjoys getting out. Beginning this week his brother will take him again to a class at the Women's Institute on the current political scene, a continuation of the class in the spring and summer. He-Who really enjoys going even if he can't remember what was discussed. I am so grateful for this.
I constantly try to remind myself to be grateful for our moments of clarity and for all the support. We celebrated 58 years of marriage last Monday...many moments to treasure.
The story of the joys and frustrations of a care partner of a spouse with Alzheimer's disease.
Sunday, September 11, 2016
Saturday, August 13, 2016
It's gotta be cooler in Montana....
My gypsy soul is having a melt down and I'm trying to revive it. And why have my recent blogs been kinda sad. Well, damn it! This disease is sad, no cure, no remission, just progression and isolation.
My dear Artist Way sisters are tempting me with a trip to Montana to visit an AW sister. The thought of mountains and cool air are so tempting as it has been in the 100s here with high humidity. I mentioned the idea of my going to Bozeman for a few days to He-Who-Sleeps-Alot and he had a fit. He wants to go somewhere and the idea of my going on "another" all girl trip makes him mad. And sadder yet I have come to the realization that it is more than I can manage to go through airports with him without some help. I have a hard enough time getting me through with knee replacements and our last experiences together have been frustrating. On one trip he carried someone else's bag off the plane...thank God they caught up with us. On another he couldn't figure out what to do at security and then couldn't find his bag on the belt. I can't imagine trying to change planes now with him. All of it very confusing for him.
I'm not sure I can drive long distances anymore. San Antonio is just far enough but could I make it to NM? That's a possibility. I know He-Who gets so bored and what will he do when the campaign is over? Is there something called the summer doldrums? I think so.
I worry that he doesn't get any exercise. Yesterday in the pool I tried to get him to just walk back and forth with me but he mostly just sits or stands around picking leaves out of the pool. I'm sure that is comforting behavior for him as that is what he used to do with our pool in Nassau Bay but I just wish I could get him moving along.
And I wish a fairy godmother would come along and whisk us both back to San Miguel. Wheeeee!
My dear Artist Way sisters are tempting me with a trip to Montana to visit an AW sister. The thought of mountains and cool air are so tempting as it has been in the 100s here with high humidity. I mentioned the idea of my going to Bozeman for a few days to He-Who-Sleeps-Alot and he had a fit. He wants to go somewhere and the idea of my going on "another" all girl trip makes him mad. And sadder yet I have come to the realization that it is more than I can manage to go through airports with him without some help. I have a hard enough time getting me through with knee replacements and our last experiences together have been frustrating. On one trip he carried someone else's bag off the plane...thank God they caught up with us. On another he couldn't figure out what to do at security and then couldn't find his bag on the belt. I can't imagine trying to change planes now with him. All of it very confusing for him.
I'm not sure I can drive long distances anymore. San Antonio is just far enough but could I make it to NM? That's a possibility. I know He-Who gets so bored and what will he do when the campaign is over? Is there something called the summer doldrums? I think so.
I worry that he doesn't get any exercise. Yesterday in the pool I tried to get him to just walk back and forth with me but he mostly just sits or stands around picking leaves out of the pool. I'm sure that is comforting behavior for him as that is what he used to do with our pool in Nassau Bay but I just wish I could get him moving along.
And I wish a fairy godmother would come along and whisk us both back to San Miguel. Wheeeee!
Wednesday, August 10, 2016
No boost from Boost
Well, the Boost didn't boost this morning. Every day for the past three years I have put a chocolate bottle of Boost on the breakfast table for He-Who-Sleeps-Alot. I add it to the other breakfast stuff as I feel he needs the "boost". He takes his morning pills with it along with his Axona drink.
This morning I am sitting in the living room and he comes in with the empty Axona glass in one hand and the full Boost bottle in the other. "What is this?" he asks holding up the Boost. I told him what it was and that he should drink it. He did and I'm thinking, "Oh boy, this is going to be a fun day."
Right now we are waiting for Dr. Ho (yeah, that's really his name), the podiatrist to arrive. One of the nice services offered here is having Dr. Ho come to our apartment when needed. We sign up ahead of time for a slot on a Wednesday once a month but we are never sure what time he will show up. Looks like he is running late again. Life on hold with the elderly...I can't leave as He-Who won't remember he is coming and won't know how to pay him.
A good time to blog, huh!
Sunday, July 24, 2016
Caregiver's Lament
Caregiver’s Lament
The bracelet
labels me “Caregiver,”
gives me an ID
number
labels me as one
who looks after someone with memory loss.
But there are some
days now
when I don’t
want to “care,”
don’t want to
answer the same question for the tenth time,
days when I try
to find the courage
to say no to
another trip to Starbuck’s,
days when I
don’t want to explain which is the phone,
which is the TV
remote,
days when I
tired of coaxing him to eat,
to take his
pills, to brush his teeth,
days when I have
ask him not to wear his pajama top to church
even though he
calls it a shirt,
days when I’m
tired of being angry and frustrated
when I am lonely
and miss the brilliant, funny man I knew.
There are days
when I want to take off that cloak, that bracelet
and travel to an
exotic landscape if only in my mind,
when I want
someone to ask me if I would like to go for ice cream
or would I like
to watch a movie?
when I wish
someone else would take out the trash,
days when it
would just be nice to be remembered
days when I wish
someone would take care of me.
Saturday, June 25, 2016
A neighbor moved today
A going away party for my lovely neighbor, Elizabeth Lanham, in the blue print blouse. She is 90+, sharp as a tack and going back to Gatesville to live with her son. I will miss her and the irony of living next to my maiden name but there will be an enclave of Lanhams up near Dallas where quite few of my Lanham relatives live already. He-Who, in the background, had a fair time at the party but left early. I think the estrogen level in the room must have been overwhelming, plus he has difficulty hearing and understanding in a room where there is a lot of high decimal chatter. Geez, so do I sometimes!
I'm going through file after file and throwing away and shredding. Fortunately our office will shred for free. How does all this paper accumulate!!
Our TV is not working correctly and after an hour with Xfinity/Comcasst they finally decided to send a technician but not til Monday. Bah humbug!
Better go check the fridge...I asked He-Who to put away the soup container and sometimes stuff ends up in the freezer. He has the hardest time with any kind of directions in spite of my efforts to make them simple.
He was a happy camper yesterday. We found him two new Hawaiian shirts at Walmart and he loves them. I'm for anything that is wash and wear! :)
I'm going through file after file and throwing away and shredding. Fortunately our office will shred for free. How does all this paper accumulate!!
Our TV is not working correctly and after an hour with Xfinity/Comcasst they finally decided to send a technician but not til Monday. Bah humbug!
Better go check the fridge...I asked He-Who to put away the soup container and sometimes stuff ends up in the freezer. He has the hardest time with any kind of directions in spite of my efforts to make them simple.
He was a happy camper yesterday. We found him two new Hawaiian shirts at Walmart and he loves them. I'm for anything that is wash and wear! :)
Tuesday, June 21, 2016
Communion
We don't often get to church and I so miss our wonderful congregation at the Bay Area Unitarian/Universalist in Clear Lake but I'm finding there are many other opportunities to practice our faith. One has come up recently with my neighbor. I will call her Beverly, at least 10 years younger than me and declining rapidly with dementia. Her sister, Alice, is here for the second time in the last 9 months to look after her. Beverly has been very reclusive since we met her two years ago, seldom eating with others in the dining room and never attending any activities. The few times I have seen her she wore a "deer-in-the headlights" look. Alice lives in North Carolina, a retired nurse with an adult son who is autistic. She has been here now for several weeks getting her sister through a gauntlet of tests. Alice wants to move Beverly to NC and has located a pleasant assisted living facility not far from Alice's home but Beverly is resistant, of course. At this point Alice is pulling her hair out trying to deal with it all and has been shut in her sister's apartment helping her dress, etc.
I ran into Alice taking a walk for a break and invited her to call or come over when she needed a glass of wine or a hug. And she called! I had just made a batch of brownies and invited them both over for wine and brownies. Beverly doesn't drink alcohol any more which is a good thing but was happy with a cold Fresca. And Alice talked and talked and He-Who so enjoyed the visit. I did what I could to support Alice and the move going through all the reasons why we are moving to San Antonio. Beverly sat listening but said little. Alice calls her by the nickname of "Bev" and when I hugged her goodby, I asked if I, too, could call her Bev. She smiled and said, "Of course, you are family now." Mission accomplished!!!
On reflection I thought we had just had communion shared with love and compassion. And this is what it is all about. And it was so good for He-Who to feel that he was helping and contributing. And he showed them the new book with the dedication to him.
Later I ran into Alice again and she thanked us once more and said that was the only social event she has had here. Damn, this disease can be and is so isolating for the victim and the caregiver.
I ran into Alice taking a walk for a break and invited her to call or come over when she needed a glass of wine or a hug. And she called! I had just made a batch of brownies and invited them both over for wine and brownies. Beverly doesn't drink alcohol any more which is a good thing but was happy with a cold Fresca. And Alice talked and talked and He-Who so enjoyed the visit. I did what I could to support Alice and the move going through all the reasons why we are moving to San Antonio. Beverly sat listening but said little. Alice calls her by the nickname of "Bev" and when I hugged her goodby, I asked if I, too, could call her Bev. She smiled and said, "Of course, you are family now." Mission accomplished!!!
On reflection I thought we had just had communion shared with love and compassion. And this is what it is all about. And it was so good for He-Who to feel that he was helping and contributing. And he showed them the new book with the dedication to him.
Later I ran into Alice again and she thanked us once more and said that was the only social event she has had here. Damn, this disease can be and is so isolating for the victim and the caregiver.
Monday, June 13, 2016
Reeling and sad...what has happened to America?
OMG, what a horror! This terrible mass shooting has left me shaken to the core! And certainly has a way of putting my life in perspective! I can't imagine what it must be like to be the mom waiting outside the Orlando hospital for word on her son! My heart bleeds for her and all the other families sent reeling by this latest senseless murder of dozens. Why cannot we put an end to these massacres? Why are assault rifles available to civilians or in this case, someone already on a list of suspicious ties to ISIS? What happens to a young person to fill them with such hate? And I can't imagine what other countries must be thinking as they observe our armed population and the arrogant, racist bully who has become one of our presidential nominees.
My life as a caregiver seems simple in comparison and I can better appreciate the isolation and insulation we find here on this Island of the Blue Hairs. Now my task is to prepare for the future move to another Island on the northwest side of San Antonio. We signed a lease last week for a projected move-in the end of September or October. How did we accumulate more stuff in the 2 short years we have lived here?
He-Who-Sleeps-Alot had a great time last week in San Antonio at our granddaughter's high school graduation. My daughter-in-law and a friend had a large party to celebrate and we both enjoyed meeting our granddaughter's friends and their parents and grandparents. He-Who was quite sociable chatting with guests and I doubt anyone suspected he would not remember any of them the next day. But he did remember he had a great time and I am so grateful for these moments of joy. My DIL knocked herself out cooking for all of us and making sure we all got where we needed to be at the right times. Love that woman! I'm finding my son to be an amazing host as well and he is having such fun with his new outdoor kitchen complete with a TV...his outdoor man cave that produces delicious grilled shrimp.
Darn my stupid back...went bizzerk the morning of graduation so I was kinda limping along but managed to make it through all 600+ grads and home again. It isn't a new problem as I have ruptured discs in my lower back but it certainly was inconvenient and still bothers me. My regular orthopedic doc has left the practice and I can't get into another until July 13. I kept thinking I would wait until we moved but realize I better get it attended to ASAP. I managed to drive home from San Antonio but have been babying it ever since with heat packs. But again, looking at Orlando, I'm trying not to complain and He-Who is happy to do any lifting.
He-Who had a wonderful surprise on returning home. Four copies of the latest book, Space for the 21st Century, edited and published by his good friend, Langdon Morris, from the Aeronautical Technology Working Group that He-Who formed years ago. It has a beautiful dedication to He-Who as a leader in aerospace...brought tears to my eyes and certainly gave him a boost. It means so much to both of us to have his tangible legacies.
So much to be grateful for.....we are blessed indeed.
My life as a caregiver seems simple in comparison and I can better appreciate the isolation and insulation we find here on this Island of the Blue Hairs. Now my task is to prepare for the future move to another Island on the northwest side of San Antonio. We signed a lease last week for a projected move-in the end of September or October. How did we accumulate more stuff in the 2 short years we have lived here?
He-Who-Sleeps-Alot had a great time last week in San Antonio at our granddaughter's high school graduation. My daughter-in-law and a friend had a large party to celebrate and we both enjoyed meeting our granddaughter's friends and their parents and grandparents. He-Who was quite sociable chatting with guests and I doubt anyone suspected he would not remember any of them the next day. But he did remember he had a great time and I am so grateful for these moments of joy. My DIL knocked herself out cooking for all of us and making sure we all got where we needed to be at the right times. Love that woman! I'm finding my son to be an amazing host as well and he is having such fun with his new outdoor kitchen complete with a TV...his outdoor man cave that produces delicious grilled shrimp.
Darn my stupid back...went bizzerk the morning of graduation so I was kinda limping along but managed to make it through all 600+ grads and home again. It isn't a new problem as I have ruptured discs in my lower back but it certainly was inconvenient and still bothers me. My regular orthopedic doc has left the practice and I can't get into another until July 13. I kept thinking I would wait until we moved but realize I better get it attended to ASAP. I managed to drive home from San Antonio but have been babying it ever since with heat packs. But again, looking at Orlando, I'm trying not to complain and He-Who is happy to do any lifting.
He-Who had a wonderful surprise on returning home. Four copies of the latest book, Space for the 21st Century, edited and published by his good friend, Langdon Morris, from the Aeronautical Technology Working Group that He-Who formed years ago. It has a beautiful dedication to He-Who as a leader in aerospace...brought tears to my eyes and certainly gave him a boost. It means so much to both of us to have his tangible legacies.
So much to be grateful for.....we are blessed indeed.
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