Nancy Reagan said it best when she coined the phrase "the Long Goodbye". We've begun to realize the little things that are gone. My brother has been single for 50 years and has now met someone he really cares about. Both my parents prayed for him to find someone to share his life with and to bring him happiness. He made the comment a few weeks ago that if he introduces his lady friend to my parents, she will never get to know the real Mom. The person of grand debates and witty come backs is gone. And there isn't a way to get her back. What a loss to not be able to show the person you love, the person who helped make you who you are today.
I am feeling that loss this week too. I've had a lot of stress with a traumatic relationship of my youngest son's. My heart breaks for him. Wanting to be a good mom, I want to be strong for him, to keep myself together so he can have that strong support. I really want to talk to my mommy and get that support for myself. But that is no longer an option for me as well. She is able to grasp the big picture. She asks me about 5 times during our weekly phone conversations how he is doing and how angry she is with his now ex-wife. But I know a true conversation with support and understanding is just not possible. I miss that and I grieve the loss of that possibility.
Some Bible teachers talk about how God gives us challenges and trials to bring us closer to Him. I am thankful I am a believer. I really don't know how people who don't have faith can cope. I think back to several families from the assisted living and my nursing home days. How they talked about how they got to the place they were caring for and doing the right thing for a person who had become a stranger. The strength to do that just boggles my mind. At the time, I nodded my head, understanding in the logic part of my brain. But to feel what they must have felt brings me a whole new admiration for the tremendous people God has placed in my path. Thank God for them. Thank God for His strength when I have none.
Saturday, February 22, 2014
Saturday, February 15, 2014
Love and a Progressive Illness
This week my topic is not necessarily about dementia. I am so thankful for the deep and long lasting love my parents have that prompts my dad to be a devoted caregiver. Some times that is frustrating because I think they should move closer to me. But I know he is committed to "taking care of our own".
This week I watched a couple in our bowling league. In years past, the husband's mother would come to the bowling. I could tell she had some kind of neurological disease. She walked with a walker and had a tremor. I don't know them well enough to know exactly what the illness is. From my experience at the assisted living, I would guess maybe Huntington's disease. She must have progressed because she no longer comes with them to bowling. I look at the husband and I am guessing he has inherited the gene for whatever his mother has. The wife is crazy competitive when it comes to bowling. They played against our team this week. They didn't do so well and the wife gets so angry when they don't do well. In fact I had one person who used to be on their team say one of the reasons she quit the league bowling was because this gal is so crazy competitive.
So I heard the husband make the comment he was not doing well because he just didn't have the strength to throw the ball so it would hit right. It was kind of a lightening bolt for me. I got to thinking, here is a man with an illness that is going to make it almost impossible for him to continue to bowl well. The wife is so extremely competitive. At what point will she or will she ever, give up the competitiveness realizing he is just not going to be able to keep it up. Certainly I'm sure he can continue to bowl and enjoy it and try to keep what muscle mass he has currently. But it appears to be a progressive illness. Do you suppose she realizes what kind of emotional damage her competitiveness can do to her husband?
On this day after Valentine's Day, I'm reminded that true love is so much more than the movies and greeting cards proclaim. Here's to the couples, unknown out there, putting their love into action day after day. That is true love.
This week I watched a couple in our bowling league. In years past, the husband's mother would come to the bowling. I could tell she had some kind of neurological disease. She walked with a walker and had a tremor. I don't know them well enough to know exactly what the illness is. From my experience at the assisted living, I would guess maybe Huntington's disease. She must have progressed because she no longer comes with them to bowling. I look at the husband and I am guessing he has inherited the gene for whatever his mother has. The wife is crazy competitive when it comes to bowling. They played against our team this week. They didn't do so well and the wife gets so angry when they don't do well. In fact I had one person who used to be on their team say one of the reasons she quit the league bowling was because this gal is so crazy competitive.
So I heard the husband make the comment he was not doing well because he just didn't have the strength to throw the ball so it would hit right. It was kind of a lightening bolt for me. I got to thinking, here is a man with an illness that is going to make it almost impossible for him to continue to bowl well. The wife is so extremely competitive. At what point will she or will she ever, give up the competitiveness realizing he is just not going to be able to keep it up. Certainly I'm sure he can continue to bowl and enjoy it and try to keep what muscle mass he has currently. But it appears to be a progressive illness. Do you suppose she realizes what kind of emotional damage her competitiveness can do to her husband?
On this day after Valentine's Day, I'm reminded that true love is so much more than the movies and greeting cards proclaim. Here's to the couples, unknown out there, putting their love into action day after day. That is true love.
Saturday, February 8, 2014
Observation about Long Term Memory
We all know that one of hallmarks of dementia is the loss of short term memory, but the long term memory remains through out most of the disease. I've seen it a hundred times. The resident that begins to be agitated in the afternoon because they need to go get the kids from the bus stop. The resident that wants to know who that old person in the window (mirror) is. I've never really thought about it much, it's just one of those facts.
But one of the repeated topics I hear from my mom every week is about how she can remember all kinds of things from her past. (also so typical, "I don't have any trouble with my memory. I remember things from my past as if they happened yesterday). To hear her explain, it seems that these memories float to the top of her awareness unbidden. It makes you wonder. The mind is such a marvelous creation. It is working all the time whether we know it or not. From the to do list that starts in your head when you are trying to go to sleep, to the rhythm of your breathing, to your dreams where they say you are trying to work out problems in your sleep. On and on the brain goes without our conscious thought. So it makes me wonder. This phenomenon of beginning to live in the past. Is it the brain working over time? Because the short term memory centers are damaged and the brain has to keep working, is that why these long term memories surface?
I'm sure I will never understand why. The more we learn, the more we realize we don't know about this disease. But I hope I can have some kind of take away to help not only my own family, but my assisted living residents. Meet them where they are, that is the philosophy. You just have to discover where that might be and try to join them.
But one of the repeated topics I hear from my mom every week is about how she can remember all kinds of things from her past. (also so typical, "I don't have any trouble with my memory. I remember things from my past as if they happened yesterday). To hear her explain, it seems that these memories float to the top of her awareness unbidden. It makes you wonder. The mind is such a marvelous creation. It is working all the time whether we know it or not. From the to do list that starts in your head when you are trying to go to sleep, to the rhythm of your breathing, to your dreams where they say you are trying to work out problems in your sleep. On and on the brain goes without our conscious thought. So it makes me wonder. This phenomenon of beginning to live in the past. Is it the brain working over time? Because the short term memory centers are damaged and the brain has to keep working, is that why these long term memories surface?
I'm sure I will never understand why. The more we learn, the more we realize we don't know about this disease. But I hope I can have some kind of take away to help not only my own family, but my assisted living residents. Meet them where they are, that is the philosophy. You just have to discover where that might be and try to join them.
Sunday, February 2, 2014
Scary Situations Out There
I had a lady come tour last week. She was referred to us by the sitter service she is currently using. Her family pays for a sitter 4 hours a day. She is in the mid stages of Alzheimer's probably about the same place as my mother, maybe a little further along. We toured one of our rooms, went next door to talk to the resident in that room and when we walked by the empty room we had just toured less than 10 minutes before, it was new to her.
The director of the sitter service says the lady cries when the sitters leave every day because she is scared. Her family lives out of town, like so many these days. I'm sure 4 hours a day at $15 an hour is what the family can afford. Yet I shudder to think of this lady home alone for 20 hours a day. Like so many situations, the family doesn't want to upset her by talking about assisted living. Unfortunately, the symptoms of dementia are such that there comes a time when the individual can no longer be the one to make those decisions.
I have one resident who stayed at home until she burned her house down and then had no where else to go. Luckily, she was not killed in the fire. A year or so ago, there was another fire in a town close by and the owner was not so lucky. The news talked about how she was known to have Alzheimer's disease. And these are just the situations I am aware of. Our nurse at assisted living also works in the emergency room of the local hospital. She sees a lot and tells me I just can't imagine what is out there in the community.
I know it's not easy to make an unpopular decision. But is it preferable to leave someone home alone who is not really able to care for themselves and who is scared on top of it? I can only imagine the situation is going to get worse. Skilled nursing paid for by Medicaid is going to get more difficult to qualify for as their budget gets overwhelmed by the age tsunami. People of this generation have mostly not purchased long term care insurance. Too many have relied on social security only for their retirement. People of my generation have to keep working until we die because we can't afford to quit working. I don't know the answer, but it is scary.
The director of the sitter service says the lady cries when the sitters leave every day because she is scared. Her family lives out of town, like so many these days. I'm sure 4 hours a day at $15 an hour is what the family can afford. Yet I shudder to think of this lady home alone for 20 hours a day. Like so many situations, the family doesn't want to upset her by talking about assisted living. Unfortunately, the symptoms of dementia are such that there comes a time when the individual can no longer be the one to make those decisions.
I have one resident who stayed at home until she burned her house down and then had no where else to go. Luckily, she was not killed in the fire. A year or so ago, there was another fire in a town close by and the owner was not so lucky. The news talked about how she was known to have Alzheimer's disease. And these are just the situations I am aware of. Our nurse at assisted living also works in the emergency room of the local hospital. She sees a lot and tells me I just can't imagine what is out there in the community.
I know it's not easy to make an unpopular decision. But is it preferable to leave someone home alone who is not really able to care for themselves and who is scared on top of it? I can only imagine the situation is going to get worse. Skilled nursing paid for by Medicaid is going to get more difficult to qualify for as their budget gets overwhelmed by the age tsunami. People of this generation have mostly not purchased long term care insurance. Too many have relied on social security only for their retirement. People of my generation have to keep working until we die because we can't afford to quit working. I don't know the answer, but it is scary.
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