Sometimes, your loved one's belongings disappear in the facility. The staff blames this phenomenon on the "shoppers," dementia patients who roam the premises stealthily, looking for items to take back to their rooms and squirrel away. Do these items remind them, perhaps, of something they used to own? Or are they plain-old kleptomaniacs looking for loot? Who knows? Either way, your loved one's things might wander off, and they certainly won't do so on their own.
One of the things you must do, of course, is clearly label all of your loved one's clothing and every single personal item so belongings can be easily identified and returned. In the beginning, I used lovely little laundry tags, discreetly affixed. As time has gone on, I've started doing what everyone else seems to do, and which I once found horrid: LOVED ONE'S NAME in LARGE letters using PERMANENT MARKER directly on the fabric. Even then, it washes out in the laundry and must be redone on occasion, assuming you can find the item, so carry your laundry marker with you when you visit. The detergent used is heavy duty. It has to be in order to disinfect soiled items. You might not recognize things, yourself, after they've gone through the laundry.
(PRO HINT: Navy blue sweats become a lovely shade of rust. My husband now owns four or five terribly attractive pairs of rust-colored pants.)
And speaking of laundry, it's interesting that even clearly labeled items can often end up in limbo, never to be seen again. For instance, all of my husband's towels and washcloths have vanished into thin air. They are not in the laundry room. They are not in the closets or dressers or under the mattresses of others. They are just gone without a trace. Poof. That happens. I'll replace them, naturally, and this time I'll mark them up with even BIGGER letters. I hope that'll do the trick.
All of that to say this: If there's any real value to an item, monetary or sentimental, it's probably best to leave it at home. But if it provides comfort to your loved one -- perhaps a favorite stuffed animal or blanket or shirt -- remember the shoppers. If your loved one adores an item, so will at least one of the shoppers. Label everything with large letters that can be easily seen by the caregivers and laundry workers; because, though they certainly do their best, they can't be expected to remember what belongs to which resident.
Saturday, May 25, 2019
Monday, April 29, 2019
You're a Good Kid
April 26, 2019
There was a party going on this afternoon when I arrived for a visit with my husband. Cheerful people were smiling and laughing and chatting and enjoying music. There was sparkling cider and a marvelous cake with whipped cream and fresh strawberries. It isn't every day someone turns 85! The resident being celebrated is married to a lovely, vivacious, much younger woman who comes to see him several times a week. It's good to know that most of the residents do have frequent visitors. It isn't the kind of place where you drop off Gramps, walk away, and never come back. So, there's that.
My husband was in his room, on his bed, staring at the wall. I sat next to him, and he allowed me to give him a little rubdown. I told him there was a party going on and asked him if he'd like to go there with me. It took some coaxing, but he did let me take his hand and lead him out to the common area, finally. He was all smiles, too, which is a bit unusual.
He smiled at me, he smiled at the other residents, he smiled at the hospice people who were there, he smiled at the caregivers. I was happy to see him in such an apparent good mood and took advantage of the situation to "dance" around with him a bit, holding his hands and beaming up at him like a schoolgirl. And just when I thought all his attention was on me, he reached out and patted the derriere of a guest who was bending over a table. She seemed rather flattered, thank goodness. Pro tip: Don't bend over tables around people who have lost all their social filters!
We continued intermittently "dancing" and resting. He hadn't said anything at all, but that isn't unusual anymore. At one point, as I was giving him one of many special hugs, he reciprocated, tried to lick me, grinned, looked me right in the eye, and said, "You're a...You're a good kid."
It's stunning how such a small thing can mean so much.
There was a party going on this afternoon when I arrived for a visit with my husband. Cheerful people were smiling and laughing and chatting and enjoying music. There was sparkling cider and a marvelous cake with whipped cream and fresh strawberries. It isn't every day someone turns 85! The resident being celebrated is married to a lovely, vivacious, much younger woman who comes to see him several times a week. It's good to know that most of the residents do have frequent visitors. It isn't the kind of place where you drop off Gramps, walk away, and never come back. So, there's that.
My husband was in his room, on his bed, staring at the wall. I sat next to him, and he allowed me to give him a little rubdown. I told him there was a party going on and asked him if he'd like to go there with me. It took some coaxing, but he did let me take his hand and lead him out to the common area, finally. He was all smiles, too, which is a bit unusual.
He smiled at me, he smiled at the other residents, he smiled at the hospice people who were there, he smiled at the caregivers. I was happy to see him in such an apparent good mood and took advantage of the situation to "dance" around with him a bit, holding his hands and beaming up at him like a schoolgirl. And just when I thought all his attention was on me, he reached out and patted the derriere of a guest who was bending over a table. She seemed rather flattered, thank goodness. Pro tip: Don't bend over tables around people who have lost all their social filters!
We continued intermittently "dancing" and resting. He hadn't said anything at all, but that isn't unusual anymore. At one point, as I was giving him one of many special hugs, he reciprocated, tried to lick me, grinned, looked me right in the eye, and said, "You're a...You're a good kid."
It's stunning how such a small thing can mean so much.
Death Comes to Journey House
April 29, 2019
Two more residents have passed away, one yesterday and one today. That makes a total of six since my husband moved in last June. I can't say either one of these two was a surprise, exactly, except that death always is surprising, even when it's expected.
It is very hard on the caregivers, who do such a fine job of nursing and changing and feeding and showing affection to each and every one. To be the ones responsible for each resident's best possible life, at the very end of life, must be both a privilege and a curse. As each person declines little by little, or sometimes quite rapidly, how difficult it must be to maintain a cheerful and encouraging demeanor.
Even as a visitor, as I am, you develop a fondness for the residents, an understanding of their quirks, a camaraderie and community with their friends and relatives. And then, suddenly, they're gone. Gone gone. He won't be grabbing my hand and holding it tight as I walk by anymore. She won't be returning my greeting with a sweet smile. It's sad from our angle. But from their point of view, I'm sure it's glorious to be free!
As my husband and I walked and swayed to the music coming through our headphones today, I held him more closely. I gave him extra smiles and plenty of kisses. I stroked his cheek gently and gazed tenderly into his eyes. I showered him with words of love and admiration. I savored every moment.
Would that we all could remember that life is a gift, a fleeting vapor. Some things really matter. And some things really don't.
Two more residents have passed away, one yesterday and one today. That makes a total of six since my husband moved in last June. I can't say either one of these two was a surprise, exactly, except that death always is surprising, even when it's expected.
It is very hard on the caregivers, who do such a fine job of nursing and changing and feeding and showing affection to each and every one. To be the ones responsible for each resident's best possible life, at the very end of life, must be both a privilege and a curse. As each person declines little by little, or sometimes quite rapidly, how difficult it must be to maintain a cheerful and encouraging demeanor.
Even as a visitor, as I am, you develop a fondness for the residents, an understanding of their quirks, a camaraderie and community with their friends and relatives. And then, suddenly, they're gone. Gone gone. He won't be grabbing my hand and holding it tight as I walk by anymore. She won't be returning my greeting with a sweet smile. It's sad from our angle. But from their point of view, I'm sure it's glorious to be free!
As my husband and I walked and swayed to the music coming through our headphones today, I held him more closely. I gave him extra smiles and plenty of kisses. I stroked his cheek gently and gazed tenderly into his eyes. I showered him with words of love and admiration. I savored every moment.
Would that we all could remember that life is a gift, a fleeting vapor. Some things really matter. And some things really don't.
Friday, April 26, 2019
Hospice Renewal
April 22, 2019
It's hard to believe, but it's been just a couple of days shy of six months since my husband was placed in hospice care. Time flies, whether or not you're having a good time.
I've been very pleased with the care and services my husband is receiving through hospice. For those of you who don't know, a hospice contract must be renewed every six months. Sometimes a person "graduates" from hospice back into regular care and then back into hospice again, over and over. That is a disquieting scenario, so even the possibility is nerve-making in the extreme.
Knowing the contract was about to expire, I was a little apprehensive over the past couple of weeks. Of course I shouldn't have been. It isn't as though my husband's condition is dramatically improving or expected to. And if an absolute creative miracle is going to happen, this would be a good time for it to do so.
When I came back home after our visit today, there was a message on the answering machine from the home health coordinator. She wanted to let me know right away that the request for renewal of hospice has been approved.
That's a relief. But it's also an indication.
It's hard to believe, but it's been just a couple of days shy of six months since my husband was placed in hospice care. Time flies, whether or not you're having a good time.
I've been very pleased with the care and services my husband is receiving through hospice. For those of you who don't know, a hospice contract must be renewed every six months. Sometimes a person "graduates" from hospice back into regular care and then back into hospice again, over and over. That is a disquieting scenario, so even the possibility is nerve-making in the extreme.
Knowing the contract was about to expire, I was a little apprehensive over the past couple of weeks. Of course I shouldn't have been. It isn't as though my husband's condition is dramatically improving or expected to. And if an absolute creative miracle is going to happen, this would be a good time for it to do so.
When I came back home after our visit today, there was a message on the answering machine from the home health coordinator. She wanted to let me know right away that the request for renewal of hospice has been approved.
That's a relief. But it's also an indication.
Friday, April 19, 2019
It's a Good Friday
April 19, 2019
Today is Good Friday. Lord, I am grateful for your willingness to come be among us, showing us how to live. Especially since You knew this day would come. And it wouldn't be pretty, but it would make a way for us to be reconciled to the Father. Thank you! Hallelujah, what a Savior!
It's hard to explain how or why, but my husband and I had an excellent visit today. When I arrived, he was doing battle royale with the caregivers who were trying to usher him into the bathroom for a change of everything and a shower. Bless them! They are so patient and kind, and they do a great job. But I thought, "Oh, boy. This is gonna be wonderful..."
When he walked back out, he was all cleaned up, smelled good, and looked handsome with his hair combed and tamed. He was still confused and agitated, so I greeted him with a big smile and my very best "calm and soothing" voice. He responded with a big smile and -- I thought -- recognition. He was smiling at ME, not just at some woman saying hello. He took my hand, looked into my eyes, smiled again, and gave me a kiss. Wow! My heart was so filled with joy.
After several hours of relative wonderfulness, he decided to lie down on his bed. I pulled up his covers as he gazed at me. I took his hand and asked him if he wanted to pray. He nodded his head and folded his hands, and I said the Lord's Prayer. Then I asked if he wanted to pray for our children. Again, he nodded his head. I took his hand, and I prayed. I felt as though he was praying with me, though of course he didn't utter a syllable. It has been a very long time since we have had such a cognitive connection.
So, on this Easter weekend, I thought it would be good to share this miraculous day -- this Resurrection story -- with you. Our prayers don't have to be loud to be heard. The Lord knows our hearts, and He knows how much today meant to me in so many ways. What a gift!
Speaking of Resurrection, Sunday's coming! All around the globe, Christians will proclaim, "The Lord is Risen! He is Risen indeed!" Happy Easter to you all.
Today is Good Friday. Lord, I am grateful for your willingness to come be among us, showing us how to live. Especially since You knew this day would come. And it wouldn't be pretty, but it would make a way for us to be reconciled to the Father. Thank you! Hallelujah, what a Savior!
It's hard to explain how or why, but my husband and I had an excellent visit today. When I arrived, he was doing battle royale with the caregivers who were trying to usher him into the bathroom for a change of everything and a shower. Bless them! They are so patient and kind, and they do a great job. But I thought, "Oh, boy. This is gonna be wonderful..."
When he walked back out, he was all cleaned up, smelled good, and looked handsome with his hair combed and tamed. He was still confused and agitated, so I greeted him with a big smile and my very best "calm and soothing" voice. He responded with a big smile and -- I thought -- recognition. He was smiling at ME, not just at some woman saying hello. He took my hand, looked into my eyes, smiled again, and gave me a kiss. Wow! My heart was so filled with joy.
After several hours of relative wonderfulness, he decided to lie down on his bed. I pulled up his covers as he gazed at me. I took his hand and asked him if he wanted to pray. He nodded his head and folded his hands, and I said the Lord's Prayer. Then I asked if he wanted to pray for our children. Again, he nodded his head. I took his hand, and I prayed. I felt as though he was praying with me, though of course he didn't utter a syllable. It has been a very long time since we have had such a cognitive connection.
So, on this Easter weekend, I thought it would be good to share this miraculous day -- this Resurrection story -- with you. Our prayers don't have to be loud to be heard. The Lord knows our hearts, and He knows how much today meant to me in so many ways. What a gift!
Speaking of Resurrection, Sunday's coming! All around the globe, Christians will proclaim, "The Lord is Risen! He is Risen indeed!" Happy Easter to you all.
Friday, April 12, 2019
Pins and Needles, Part 3
April 5, 2019
The first week of each month rolls around, and I anxiously await the weigh-in. Will it be higher? Lower? The same? The hospice nurse is at the facility when I arrive. I look at her; she looks at me. We both know there's "A Question" hanging in the air.
Frankly, he doesn't appear to have lost weight to me. But he doesn't appear to have gained any, either. And that's probably not a big deal. The caregivers continue to feed him double portions plus Ensure. I would be packing on the pounds, but he is restless and only sits, exhausted, for a minute or two before resuming his endless pacing. This reportedly goes on all day, but he is often sitting briefly somewhere or other when I arrive, rather than wandering around. He's apparently burning a lot of calories, though that's hard to imagine, especially given the snail's pace at which he walks.
The nurse opens her binder and smiles at me. That's my cue to approach her. She looks at his chart. She compares his weight to previous entries. He seems to have lost half a pound. It could be a minor blip, or last month's weight might have been off a bit, or the weigh-in wasn't exactly accurate. She looks up at me reassuringly. Nothing to worry about, no need to be concerned.
I should be breathing a sigh of relief, but I'm not. I'm not even sure I remember what that's like, exactly. We'll see what Pins and Needles, Part 4, brings.
The first week of each month rolls around, and I anxiously await the weigh-in. Will it be higher? Lower? The same? The hospice nurse is at the facility when I arrive. I look at her; she looks at me. We both know there's "A Question" hanging in the air.
Frankly, he doesn't appear to have lost weight to me. But he doesn't appear to have gained any, either. And that's probably not a big deal. The caregivers continue to feed him double portions plus Ensure. I would be packing on the pounds, but he is restless and only sits, exhausted, for a minute or two before resuming his endless pacing. This reportedly goes on all day, but he is often sitting briefly somewhere or other when I arrive, rather than wandering around. He's apparently burning a lot of calories, though that's hard to imagine, especially given the snail's pace at which he walks.
The nurse opens her binder and smiles at me. That's my cue to approach her. She looks at his chart. She compares his weight to previous entries. He seems to have lost half a pound. It could be a minor blip, or last month's weight might have been off a bit, or the weigh-in wasn't exactly accurate. She looks up at me reassuringly. Nothing to worry about, no need to be concerned.
I should be breathing a sigh of relief, but I'm not. I'm not even sure I remember what that's like, exactly. We'll see what Pins and Needles, Part 4, brings.
Sunday, April 7, 2019
The Best Years of Our Lives
In follow-up to "Decennium Atrocius," I was thinking about something the other day that I probably should share. I'm just not sure how to do that without having a pity party, but I'll try:
Alzheimer's is an "awful, terrible, no good, very bad" disease (hat tip to Judith Viorst's excellent Alexander and the Terrible, Horrible, No Good, Very Bad Day). I think most everyone would agree with that statement. Most people who get Alzheimer's are elderly. But not all. My husband is in the second category.
As I look back on the past decade (plus), it occurs to me that probably the very best years of our lives have been stolen by this enemy. Our kids are out of school, planning and developing their careers, and establishing their own families. We worked hard and were looking forward to saving hard for the retirement we'd be enjoying in a few short years.
We'd thought about perhaps taking six months to travel from town to town and state to state (we live in the United States), renewing friendships with old friends who have moved away, seeing the beautiful sights along the way, enjoying each other's company, relaxing together, perhaps seeing again the places we'd particularly loved over the years. It was going to be wonderful, and I had even bigger dreams for us. Dreams where we walked along the coast in Ireland and visited ancestral villages in England and sat, hand-in-hand, at a little cafe in Paris while contemplating a trip to New Zealand or Bora Bora or other exotic locations. Just the two of us.
But, as you well know, our retirement doesn't look like that at all. In fact, it is "a perfect graveyard of buried hopes" (Anne Shirley in Anne of Green Gables, by Lucy Maude Montgomery). I haven't spent a lot of time feeling sorry for myself during this trial by fire. Truly. Life is not fair, so why should it be fairer to me -- to us -- than to the next person? Every once in a while -- let's be real -- it does hit me like a ton of bricks. Even if, at some point, I were to be able to travel to every fantastic place in the world, do all sorts of phenomenal things, take thousands of photos, and write hundreds of blog posts, it just wouldn't be the same without my beloved.
And so my dreams have gotten smaller. They consist of hoping he will smile at me and recognize me when I enter the room. Perhaps he will even say something to me. I dream of being able to bring him home to care for him, but that is currently completely out of the question. I dream that I will walk into his room, and he will say, having packed all his things, "There you are! I feel so much better now. Where would you like to go? What would you like to do? Let's go home first, though, okay?"
It would be such a small thing for my God, Who created the universe by speaking it into being, to perform this miracle. But it would be such a big thing for me. It would be the biggest thing ever.
Alzheimer's is an "awful, terrible, no good, very bad" disease (hat tip to Judith Viorst's excellent Alexander and the Terrible, Horrible, No Good, Very Bad Day). I think most everyone would agree with that statement. Most people who get Alzheimer's are elderly. But not all. My husband is in the second category.
As I look back on the past decade (plus), it occurs to me that probably the very best years of our lives have been stolen by this enemy. Our kids are out of school, planning and developing their careers, and establishing their own families. We worked hard and were looking forward to saving hard for the retirement we'd be enjoying in a few short years.
We'd thought about perhaps taking six months to travel from town to town and state to state (we live in the United States), renewing friendships with old friends who have moved away, seeing the beautiful sights along the way, enjoying each other's company, relaxing together, perhaps seeing again the places we'd particularly loved over the years. It was going to be wonderful, and I had even bigger dreams for us. Dreams where we walked along the coast in Ireland and visited ancestral villages in England and sat, hand-in-hand, at a little cafe in Paris while contemplating a trip to New Zealand or Bora Bora or other exotic locations. Just the two of us.
But, as you well know, our retirement doesn't look like that at all. In fact, it is "a perfect graveyard of buried hopes" (Anne Shirley in Anne of Green Gables, by Lucy Maude Montgomery). I haven't spent a lot of time feeling sorry for myself during this trial by fire. Truly. Life is not fair, so why should it be fairer to me -- to us -- than to the next person? Every once in a while -- let's be real -- it does hit me like a ton of bricks. Even if, at some point, I were to be able to travel to every fantastic place in the world, do all sorts of phenomenal things, take thousands of photos, and write hundreds of blog posts, it just wouldn't be the same without my beloved.
And so my dreams have gotten smaller. They consist of hoping he will smile at me and recognize me when I enter the room. Perhaps he will even say something to me. I dream of being able to bring him home to care for him, but that is currently completely out of the question. I dream that I will walk into his room, and he will say, having packed all his things, "There you are! I feel so much better now. Where would you like to go? What would you like to do? Let's go home first, though, okay?"
It would be such a small thing for my God, Who created the universe by speaking it into being, to perform this miracle. But it would be such a big thing for me. It would be the biggest thing ever.
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