Sometimes the changes are so insidious, I'm not aware of them unless I think back to a prior time and do a comparison. As we get ready to head to Florida, the comparison to last year's trip is pretty interesting. There is more confusion and the language changes are profound. As Jim's dementia progresses, the more convinced I am that it is Primary Progressive Aphasia, either Semantic or the Logopenic subtype. I guess it really doesn't matter, but I do have a clinical curiosity.
I'm getting better at preventing upsets. There will always be moments of upset that catch me off-guard. And I am working on improving my emotional response to these moments. But the key to prevention seems to be:
1) When I hear him speak, I drop what I am doing, go to him, and give him my full attention. It used to really annoy me that I would hear him speaking to me 3 rooms away. (Why can't he walk over to me?) This doesn't annoy me anymore. I realize that he is doing the best he can, and I need to accommodate the deficits he has in communicating with me.
2) Body language and tone of voice are critical. Both should reflect full attention, calm, and a loving presence.
3) A hug, hand holding, sweet kiss on the cheek all do wonders to calm the waters. They send a message: "You are safe, loved, and adored. I'm here for you and we will figure this out."
4) Avoiding TMI. Too much information is absolutely counterproductive. Short, to the point answers are the best. Long explanations simply cause profound confusion.
5) Proactively create an environment that will be calming. This means avoiding large crowds and organizing social situations in a way that will minimize the stress. When we are with friends, family, my focus and attention needs to be on Jim. If I get too wrapped up in a conversation with another person, my guard is down, and all of the things I mentioned above do not happen. Not good.
I'm very happy that I have come to this place of understanding in my relationship with Jim. It really boils down to my acceptance as Jim's caregiver. I'm embracing it, and running with it. I'm no longer fighting it. I'm far from perfect, but I'm definitely getting better at it.
We are in the process of packing, getting ready to head South for 3 months. There has been a lot of confusion the last couple of days, but fortunately no real upsets. The following conversation illustrates how I am getting better at all of this.
Me: " Do you want to pack your favorite short sleeve gray t-shirts?" (This is his staple in the summer.)
Jim: "No!!! I don't need that !!!"
Me: "OK"
The old me would have gone to great lengths to explain why he would regret it if he didn't pack his favorite shirts. An hour later he came to me and suggested that I pack the gray t-shirts for him. If he hadn't done that, my plan was to put them in my luggage surreptitiously.
I read an article the other day from the Alzheimers Reading Room. It described the fear that folks with dementia have, and that the fear often gets manifested as anger/anxiety. This makes sense to me. As I try to put myself in Jim's shoes, I can't imagine what it must be like to live in a world of confusion, a world where things do not make sense. Of course he is fearful! Who wouldn't be? I always want Jim to see me as someone who will help and protect him.
Jim's confusion about things is definitely worsening. This morning he wanted to know "whose house is this?" and "who owns this house?" I think this stems from the fact that we will be renting a condo for 3 months. Sometimes he transposes facts from one situation to another. I reassured him that we owned this house, that this is indeed our house.
He wondered about our furniture. "We shouldn't leave it here, should we?"
I know that by leaving for 3 months there is a greater likelihood of confusion for Jim. I've considered the possibility of not going, but that would have it's own set of consequences. Jim has been talking about escaping the winter and so looking forward to the warmer weather.
I imagine that over the next several years I will be faced with a lot of decisions where the best answer for Jim is not always clear. So, I'll continue to move forward knowing that I have an escape hatch. If things become too much for Jim, I'll simply say that our lease is up and it is time to go home. I don't think he would know the difference.
We leave Friday, and will do two overnights to reach FL. Jim almost never wants to drive now, so I expect this will not present itself as an issue. It will be reassuring to both of us that our friends (whom we socialize with locally) will already be there.
Thanks for stopping by. As always, it helps me to put my thoughts into words. Wishing all of my readers a Happy New Year.
Wednesday, December 28, 2016
Thursday, December 22, 2016
I Went to Wegmans by Myself
Well, I know it is a silly title for a post, but it sums up the joyful moments I had yesterday. Jim went to his Wednesday lunch with the guys. I ended up going to Wegmans to do some last minute grocery shopping for the holiday. I walked into Wegmans with my cart, and immediately realized I felt free! Free to shop, free from worry about Jim. I could take my time admiring the giant Honey Crisp organic apples that I love so much. I could gaze at the wonderful in-store whole grain breads, carefully picking and savoring my choice.
I immediately sent a quick text to my friend Amy "I am at Wegmans ALONE!" followed by a smiley face. She knew exactly what I meant. The experience probably sounds trivial to most, but it is a reminder to me of the "high alert" status I am in most of the time. That is not a complaint, simply an observation. It actually is a good thing. I believe that by staying in "high alert", I'm avoiding the pitfalls of letting my guard down when I am with Jim. It helps to prevent anxious moments and keeps things on an even keel.
The times when I must be most on guard are the times when other people are present. When others are present, it is a bit of a distraction for me, and therefore I am not as focused on what Jim might be thinking or feeling. Hence, the likelihood of an upset.
We are scaling back on our Christmas celebration. Jim and I no longer exchange gifts. Removing that expectation was the right thing to do. He no longer remembers birthdays, anniversary etc. For Christmas day we will have an open house between 1 - 4. Family is welcome to stop by. The focus will be on time together, not on presents. It all feels right.
I'll have some prepared food, nothing fancy. Mostly prepared by Costco or Wegmans. It just feels so much easier this year. In years past it was a formal dining experience, lots of homemade food, extra tables and chairs set up etc. With an open house, it will be much more casual, fewer people staying for shorter periods of time. Jim is actually looking forward to it.
The decline in his ability to speak conversationally still catches me a bit off guard. Before it was almost always pretty easy to figure out what he was referencing. It is getting harder to do so. Simple conversations are fine. But if he is trying to convey something to me, he often struggles mightily. He gets a little frustrated by this, but not as frustrated as one would expect.
Jim: "You know...." (long silence; I try to give him plenty of time to formulate what he is saying.)
Me: "Are you wondering about lunch with Mike?"
Jim: "No........." (Another long silence. I try to keep my body language quiet and comforting.)
Jim: "I don't know.....I don't remember what I was going to say...."
Me: "That's OK, you'll think of it later."
Jim: "Yeah..."
This blog and all the wonderful readers who stop by are a source of comfort, kindness and inspiration. And so as the holiday unfolds before us, I am sending lots of love and warm wishes to all my blogging friends.
I immediately sent a quick text to my friend Amy "I am at Wegmans ALONE!" followed by a smiley face. She knew exactly what I meant. The experience probably sounds trivial to most, but it is a reminder to me of the "high alert" status I am in most of the time. That is not a complaint, simply an observation. It actually is a good thing. I believe that by staying in "high alert", I'm avoiding the pitfalls of letting my guard down when I am with Jim. It helps to prevent anxious moments and keeps things on an even keel.
The times when I must be most on guard are the times when other people are present. When others are present, it is a bit of a distraction for me, and therefore I am not as focused on what Jim might be thinking or feeling. Hence, the likelihood of an upset.
We are scaling back on our Christmas celebration. Jim and I no longer exchange gifts. Removing that expectation was the right thing to do. He no longer remembers birthdays, anniversary etc. For Christmas day we will have an open house between 1 - 4. Family is welcome to stop by. The focus will be on time together, not on presents. It all feels right.
I'll have some prepared food, nothing fancy. Mostly prepared by Costco or Wegmans. It just feels so much easier this year. In years past it was a formal dining experience, lots of homemade food, extra tables and chairs set up etc. With an open house, it will be much more casual, fewer people staying for shorter periods of time. Jim is actually looking forward to it.
The decline in his ability to speak conversationally still catches me a bit off guard. Before it was almost always pretty easy to figure out what he was referencing. It is getting harder to do so. Simple conversations are fine. But if he is trying to convey something to me, he often struggles mightily. He gets a little frustrated by this, but not as frustrated as one would expect.
Jim: "You know...." (long silence; I try to give him plenty of time to formulate what he is saying.)
Me: "Are you wondering about lunch with Mike?"
Jim: "No........." (Another long silence. I try to keep my body language quiet and comforting.)
Jim: "I don't know.....I don't remember what I was going to say...."
Me: "That's OK, you'll think of it later."
Jim: "Yeah..."
This blog and all the wonderful readers who stop by are a source of comfort, kindness and inspiration. And so as the holiday unfolds before us, I am sending lots of love and warm wishes to all my blogging friends.
Thursday, December 15, 2016
Emotional Closeness versus Distance
Today is typically "mom day", but I saw the forecast and decided to help her yesterday instead of today. We live in an area with some brutal winter weather. Our metropolitan area averages between 110 - 120 inches of snow each winter. The plows and sanders keep up pretty well with the snow covered roads, but the wind, visibility, ice, and the occasional reckless driver make driving this time of year hazardous to our health. North of us, it is more like 300 inches each winter; it is a rural area with lots of small towns and villages. I don't know how they manage. For the young and hardy, I guess.
It is only 12 degrees Fahrenheit today, with a low of Zero! Wind chill will make it feel much colder. A good day to stay inside and keep warm.
My materials arrived for the Leaf Study. It includes an 8 inch tablet for video conferencing and a workbook with reading material and activities to be done on a weekly basis. Each week, there is a video conference with the assigned facilitator. I'm very hopeful and really looking forward to these sessions. The goal of the intervention is to provide the caregiver with coping skills to deal with the stress of caregiving.
I continue to learn as I go along. I seem to be doing better at preventing and minimizing upsets for Jim. It's not always preventable. Sometimes I just don't see it coming. When that happens, it is up to me to choose how to respond. The hardest part for me is not personalizing the hurtful things that are said.
Years ago, fresh out of college I took a job as an aide at a developmental center. I worked on a unit with fairly high functioning folks, but who because of their behaviors were institutionalized. (As a side note, the developmental center was closed about 15 years ago. All services are now provided in smaller, community based setting. Win-win for everyone involved.)
Anyway, I remember the challenges I faced working as an aid. I actually got quite good at preventing negative behaviors, calming techniques etc. I never personalized what was happening, simply viewed it as a function of their developmental disability.
Why can't I do that with Jim? I know why..... Not personalizing an interaction requires an emotional distance from the person. How do you do that when this is someone you have loved your whole life? These are just rhetorical questions, I know there are no real answers.
There are still plenty of good times, silly times and fun times. I think part of my survival will be to focus and remember these good times, and try to compartmentalize the bad times.
There continues to be a decline in language. Almost always, I am able to figure out what he is trying to say by paying attention to the context, prior conversations etc. Once in a while I get stumped. He usually doesn't get too bothered by it, just says something like "I'll think of it later."
Sometimes his perception of an event is quite off. And usually the perception is a negative one. We had a conversation the other day with someone we both know. The conversation was light hearted, a few laughs, very pleasant. The following day he commented that the person was rude and mean to him! I have to be very careful how I respond to something like this. If I say that I remember it differently, he is likely to become angry. It's always a balancing act, and in the end, it has to be what is best for Jim, keeping him safe, happy and content.
I had a great phone conversation with a very good friend of mine recently. I call it friendship therapy! We managed to minimize talking about Jim, and instead I was able to hear about what is going on in her life, and latest news about people we mutually know. It was wonderful. The friend and family connections keep me going.
Being able to write what is on my mind is also very helpful to me. Just organizing my thoughts, typing the words, helps me to process and work through some of the tougher issues. So thanks for stopping by. I so appreciate each one of you!
It is only 12 degrees Fahrenheit today, with a low of Zero! Wind chill will make it feel much colder. A good day to stay inside and keep warm.
My materials arrived for the Leaf Study. It includes an 8 inch tablet for video conferencing and a workbook with reading material and activities to be done on a weekly basis. Each week, there is a video conference with the assigned facilitator. I'm very hopeful and really looking forward to these sessions. The goal of the intervention is to provide the caregiver with coping skills to deal with the stress of caregiving.
I continue to learn as I go along. I seem to be doing better at preventing and minimizing upsets for Jim. It's not always preventable. Sometimes I just don't see it coming. When that happens, it is up to me to choose how to respond. The hardest part for me is not personalizing the hurtful things that are said.
Years ago, fresh out of college I took a job as an aide at a developmental center. I worked on a unit with fairly high functioning folks, but who because of their behaviors were institutionalized. (As a side note, the developmental center was closed about 15 years ago. All services are now provided in smaller, community based setting. Win-win for everyone involved.)
Anyway, I remember the challenges I faced working as an aid. I actually got quite good at preventing negative behaviors, calming techniques etc. I never personalized what was happening, simply viewed it as a function of their developmental disability.
Why can't I do that with Jim? I know why..... Not personalizing an interaction requires an emotional distance from the person. How do you do that when this is someone you have loved your whole life? These are just rhetorical questions, I know there are no real answers.
There are still plenty of good times, silly times and fun times. I think part of my survival will be to focus and remember these good times, and try to compartmentalize the bad times.
There continues to be a decline in language. Almost always, I am able to figure out what he is trying to say by paying attention to the context, prior conversations etc. Once in a while I get stumped. He usually doesn't get too bothered by it, just says something like "I'll think of it later."
Sometimes his perception of an event is quite off. And usually the perception is a negative one. We had a conversation the other day with someone we both know. The conversation was light hearted, a few laughs, very pleasant. The following day he commented that the person was rude and mean to him! I have to be very careful how I respond to something like this. If I say that I remember it differently, he is likely to become angry. It's always a balancing act, and in the end, it has to be what is best for Jim, keeping him safe, happy and content.
I had a great phone conversation with a very good friend of mine recently. I call it friendship therapy! We managed to minimize talking about Jim, and instead I was able to hear about what is going on in her life, and latest news about people we mutually know. It was wonderful. The friend and family connections keep me going.
Being able to write what is on my mind is also very helpful to me. Just organizing my thoughts, typing the words, helps me to process and work through some of the tougher issues. So thanks for stopping by. I so appreciate each one of you!
Thursday, December 8, 2016
Competing Needs
I've written before about my elderly mom who lives about 40 minutes north of me. She is mentally very sharp, but pretty limited with her mobility. She has chosen to stay in her handicapped accessible apartment in a small rural town that she proudly calls home. All well and good, but it has been a balancing act to make sure her needs are met, and to make sure she is safe.
She gave up driving quite some time ago, so she is totally dependent on the help of others for groceries, doctor visits, banking etc. Once a week I faithfully spend the day with her and help her with all of these tasks, including lunch out. She so enjoys it. The socialization is as important as the errands that we take care of. When I leave for FL, my brother arranges to have every Thursday off from work so that he is able to make the 90 minute drive to help her with all of these things.
Thursdays are never easy for Jim, as he doesn't quite know what to do with himself. He also tends to worry the whole time I am away. I've thought about bringing him along, but it really would not work out. He is not patient with waiting, boredom, delays etc. which pretty much describes my day with mom. So far, I have made this work by calling him every hour or so just to check in. He looks forward to the calls and it is reassurance to me that all is well at home.
Today was mom day, but wouldn't you know it, lake effect snow is coming our way. I started out early this morning, and the further north I went, the worse the visibility became. It just didn't seem safe to me, especially since our days our long (5 - 6 hours), and I knew the lake effect would just get worse. I pulled off the highway to call her and tell her that due to the weather we would need to reschedule our trip. Fortunately she has plenty of food, with a well stocked pantry. Her response to me:
"Well, it's up to you. You're the driver. It's not snowing much here. But it's up to you. You decide."
I knew she was terribly disappointed that we couldn't go today. But I also knew I was making the best decision for everyone involved. Including Jim.
Where we live, snow storms are inevitable during the winter. This is one of the reasons we are so happy to escape for 3 months. I remember that the last two years that I worked (prior to my retiring) Jim was especially anxious with my travel back and forth to work. Even just a few snowflakes would have him worrying and calling me frequently at work, telling me I needed to get home. At the time, I didn't fully appreciate what Jim was going through. I know now that his anxiety was getting the best of him as he worried about me traveling back and forth to work.
When we return in the spring, my plan is to ask my older (retired) brother to help more with my mom. I'm sure he'll be happy to help. He lives quite a distance from her. Selfishly, I'd love to see my mom in an assisted living situation. It would make things so much easier for everyone, but I know that she is not ready yet to give up what independence she has left.
There is this saying, maybe you have heard of it before...."Everyone listens to the same radio station. WII-FM. What's In It For Me." I know it sounds cynical, and of course it is not true all of the time. But this perspective has helped me to better understand and to be more sensitive to folks who find themselves in the middle of a WII-FM moment.
Competing needs: Jim's, my mom's, and my brother who has some disabilities. They are all just trying to get by, trying to survive, trying to maintain an equilibrium in their life that can keep them happy, safe and content. And then there are my needs too. I'm looking at 2017 as a time to find a better balance.
My trip early this morning inspired this post. I was having a hard time disappointing my mom, but thankfully was able to put it all into the proper perspective. I'm just doing the best I can given the circumstances.
Thanks for stopping by. I so appreciate each and every one of my readers.
She gave up driving quite some time ago, so she is totally dependent on the help of others for groceries, doctor visits, banking etc. Once a week I faithfully spend the day with her and help her with all of these tasks, including lunch out. She so enjoys it. The socialization is as important as the errands that we take care of. When I leave for FL, my brother arranges to have every Thursday off from work so that he is able to make the 90 minute drive to help her with all of these things.
Thursdays are never easy for Jim, as he doesn't quite know what to do with himself. He also tends to worry the whole time I am away. I've thought about bringing him along, but it really would not work out. He is not patient with waiting, boredom, delays etc. which pretty much describes my day with mom. So far, I have made this work by calling him every hour or so just to check in. He looks forward to the calls and it is reassurance to me that all is well at home.
Today was mom day, but wouldn't you know it, lake effect snow is coming our way. I started out early this morning, and the further north I went, the worse the visibility became. It just didn't seem safe to me, especially since our days our long (5 - 6 hours), and I knew the lake effect would just get worse. I pulled off the highway to call her and tell her that due to the weather we would need to reschedule our trip. Fortunately she has plenty of food, with a well stocked pantry. Her response to me:
"Well, it's up to you. You're the driver. It's not snowing much here. But it's up to you. You decide."
I knew she was terribly disappointed that we couldn't go today. But I also knew I was making the best decision for everyone involved. Including Jim.
Where we live, snow storms are inevitable during the winter. This is one of the reasons we are so happy to escape for 3 months. I remember that the last two years that I worked (prior to my retiring) Jim was especially anxious with my travel back and forth to work. Even just a few snowflakes would have him worrying and calling me frequently at work, telling me I needed to get home. At the time, I didn't fully appreciate what Jim was going through. I know now that his anxiety was getting the best of him as he worried about me traveling back and forth to work.
When we return in the spring, my plan is to ask my older (retired) brother to help more with my mom. I'm sure he'll be happy to help. He lives quite a distance from her. Selfishly, I'd love to see my mom in an assisted living situation. It would make things so much easier for everyone, but I know that she is not ready yet to give up what independence she has left.
There is this saying, maybe you have heard of it before...."Everyone listens to the same radio station. WII-FM. What's In It For Me." I know it sounds cynical, and of course it is not true all of the time. But this perspective has helped me to better understand and to be more sensitive to folks who find themselves in the middle of a WII-FM moment.
Competing needs: Jim's, my mom's, and my brother who has some disabilities. They are all just trying to get by, trying to survive, trying to maintain an equilibrium in their life that can keep them happy, safe and content. And then there are my needs too. I'm looking at 2017 as a time to find a better balance.
My trip early this morning inspired this post. I was having a hard time disappointing my mom, but thankfully was able to put it all into the proper perspective. I'm just doing the best I can given the circumstances.
Thanks for stopping by. I so appreciate each and every one of my readers.
Wednesday, November 30, 2016
Some Hope for the Future
Jim and I are in the process of changing our health care provider to a local gerontologist. Jim has been followed by the same doctor for more than 35 years. The doctor is in his early 70's, and I'm guessing close to retirement. My personal physician was actually part of the same medical group as the gerontologist, so the transition for me was easy. All my records were accessible electronically, and I was able to get a "new patient" appointment fairly quickly.
For Jim, because his transfer of care is coming from a different medical group, it is taking much longer to get him in to be seen. It just was not possible for this to be done before we leave for 3 months. Jim has one more appointment with his physician in a couple of weeks, and then when we return in early April he will transition to the care of the gerontologist.
At first it bothered me that I couldn't get Jim transferred before we left. But I'm realizing that it really works out better this way. Jim is easily upset and anxious by any changes. To start a formal geriatric evaluation with a new doctor, just before leaving for 3 months just didn't make sense. Especially since I anticipate testing, evaluation and likely new medications. All of this will be much easier to handle once we are back home; not under the pressure of the holidays and preparing to leave for FL.
I had my initial "new patient" evaluation with Dr. S. I love her! She is just as I remember her from about 10 years ago when she evaluated my dad and diagnosed him with Lewy Body Dementia. She said she remembered me, which surprised me too.
She is clinically very smart. And, she has the BEST bedside manner. So kind, thoughtful and patient. I am fortunate to have very good health. Because I have no acute health issues, the majority of my appointment I spent talking to her about Jim. It was a wonderful opportunity to set the stage and pave the way for his first meeting with her.
She will be evaluating him over two separate appointments. Blood work, imaging etc will be done. She expressed great sensitivity regarding the fact that Jim does not recognize that he has any limitations.
I cried on my drive home. They were tears of relief and hope. Relief that I was finally able to talk to Jim's (future) doctor about my concerns. And now I have hope that there will be some help for Jim and the challenges he will face during this next stage of his life.
Our Thanksgiving day went reasonably well. We enjoyed spending time with family. The next day, Jim asked me "When is Thanksgiving?" I gently reminded him that yesterday was thanksgiving and then gave him some details of the day. His reply: "Oh, yeah". What still surprises me is that this lapse in memory does not bother him at all. But that is a good thing, I think. Better for him to be oblivious about it as opposed to upset, depressed that he can't remember.
I've written before about how difficult it has been for me to leave the house without Jim. It's a combination of him wanting to be with me, and Jim feeling anxious if he is home alone. The detailed notes I leave help, but it still bothers him. Thursdays are especially problematic, as my mom needs my help for groceries, errands etc.
I'm thinking about hiring someone to spend time with Jim. I have a couple of guys in mind. One is the son of a friend of mine whom I could hire under the guise of helping with yard work etc. Jim could "supervise". The other guy is a good friend of Jim's. I could hire him to come over to hang out, or even to go out to lunch. I'll likely start this in April after we return home. This would provide me a couple of times a week when I could get out of the house without worry. It would free me for support group, helping my mom etc.
Well, thanks for stopping by. It always feels so good to put my thoughts into words. As always, thanks for listening.
For Jim, because his transfer of care is coming from a different medical group, it is taking much longer to get him in to be seen. It just was not possible for this to be done before we leave for 3 months. Jim has one more appointment with his physician in a couple of weeks, and then when we return in early April he will transition to the care of the gerontologist.
At first it bothered me that I couldn't get Jim transferred before we left. But I'm realizing that it really works out better this way. Jim is easily upset and anxious by any changes. To start a formal geriatric evaluation with a new doctor, just before leaving for 3 months just didn't make sense. Especially since I anticipate testing, evaluation and likely new medications. All of this will be much easier to handle once we are back home; not under the pressure of the holidays and preparing to leave for FL.
I had my initial "new patient" evaluation with Dr. S. I love her! She is just as I remember her from about 10 years ago when she evaluated my dad and diagnosed him with Lewy Body Dementia. She said she remembered me, which surprised me too.
She is clinically very smart. And, she has the BEST bedside manner. So kind, thoughtful and patient. I am fortunate to have very good health. Because I have no acute health issues, the majority of my appointment I spent talking to her about Jim. It was a wonderful opportunity to set the stage and pave the way for his first meeting with her.
She will be evaluating him over two separate appointments. Blood work, imaging etc will be done. She expressed great sensitivity regarding the fact that Jim does not recognize that he has any limitations.
I cried on my drive home. They were tears of relief and hope. Relief that I was finally able to talk to Jim's (future) doctor about my concerns. And now I have hope that there will be some help for Jim and the challenges he will face during this next stage of his life.
Our Thanksgiving day went reasonably well. We enjoyed spending time with family. The next day, Jim asked me "When is Thanksgiving?" I gently reminded him that yesterday was thanksgiving and then gave him some details of the day. His reply: "Oh, yeah". What still surprises me is that this lapse in memory does not bother him at all. But that is a good thing, I think. Better for him to be oblivious about it as opposed to upset, depressed that he can't remember.
I've written before about how difficult it has been for me to leave the house without Jim. It's a combination of him wanting to be with me, and Jim feeling anxious if he is home alone. The detailed notes I leave help, but it still bothers him. Thursdays are especially problematic, as my mom needs my help for groceries, errands etc.
I'm thinking about hiring someone to spend time with Jim. I have a couple of guys in mind. One is the son of a friend of mine whom I could hire under the guise of helping with yard work etc. Jim could "supervise". The other guy is a good friend of Jim's. I could hire him to come over to hang out, or even to go out to lunch. I'll likely start this in April after we return home. This would provide me a couple of times a week when I could get out of the house without worry. It would free me for support group, helping my mom etc.
Well, thanks for stopping by. It always feels so good to put my thoughts into words. As always, thanks for listening.
Saturday, November 19, 2016
What I Didn't Know
I'm still learning. I wish I knew everything there is to know about dementia and cognitive impairment, but of course I don't. I am grateful that I approach this journey with an open heart and an open mind. I truly believe that it is the only way that I can be of help to Jim as we travel this dementia road together.
Jim has been going to the same dentist for many years. The dental practice was about a 40 minute drive from our home. In addition, Jim was becoming less happy with the practice. I don't know the basis for his dissatisfaction, as he had a hard time clearly articulating his concerns. He drove to his last appointment 6 months ago.
Given the issues with driving and his increasing unhappiness with his dentist, I suggested he switch to my dentist. Much closer, and her practice is great. She specializes in gentle dentistry. The appointment was made. I called ahead of time to make certain that the dentist, hygienist, and office staff knew about Jim's dementia. I thanked them ahead of time for their patience and understanding.
Jim takes very good care of his teeth. We didn't expect much at the appointment, other than some x-rays that were due, routine cleaning, and check up by the dentist. Jim asked me to come into the exam room with him, which I was glad to do.
It was just short of a disaster.
The x-rays were "painful" (his word) as he held the x-ray apparatus in his mouth. The cleaning caused additional pain for him, and he was quite vocal about it. I felt bad for the hygienist. She was on pins and needles from the moment Jim started insulting her. This of course made it worse, as her hands were shaking and she was having difficulty manipulating her instruments because of her nervousness.
Jim called for her to be fired. He complained loudly to everyone who could hear about how she hurt him badly. Once home, he insisted that I call the office and demand our money back. And, he started talking about a lawsuit against the hygienist! Oh my.
I fibbed, and told him that we were reimbursed for the cost of the visit. Regarding the lawsuit, I started talking about the thousands of dollars we would need to pay, for a lawsuit with an uncertain outcome. He let that drop. But he was still so angry about the hygienist. I appeased him by telling him that I was certain she would be fired.
I know that sounds crazy, but what else could I do? My goal became one of helping him to get to a place of calm. We're still not there yet, but it's better.
Here's what I didn't know: dementia alters a persons perception of pain. They experience pain at a higher level than those without dementia. MRI's have verified this with areas of the brain that light up when someone experiences pain. The research showed that someone with dementia is much more sensitive to painful stimuli. You can check out a very interesting article from Science Daily here.
If I had known this, I would have asked for pre-treatment pain medication. He somehow made it through the appointment, albeit very unhappy and pretty angry. His teeth are perfect, and he needs no additional work, thank goodness.
And it's not over yet. Apparently the hygienist slightly nicked an area close to the gum line. I'm guessing it occurred when he was moving around in the chair, combined with her shaking hands. He complained mightily for 2 days. I honestly couldn't see it. I called the office and arranged for the dentist to look at it. She showed me with the magnified mirror the tiny nick that was causing him so much pain. She compared it to a nick you might get from a sharp potato chip. She reassured him, advised tylenol, bland diet and warm salt water rinses for the next few days. Every day, he has me look in his mouth to check on the progress, and this of course triggers another rant about the hygienist.
There was a silver lining in this experience. The dentist and all of her staff were wonderful. I was of course mortified at the cruel things he was saying to the hygienist. But in spite of his melt down, everyone treated him with the utmost kindness and respect. I will always remember and be grateful for that. I have written a thank you note to the staff that will go out in tomorrow's mail.
The other day I had my own doctor's appointment. It was for 3:30 in the afternoon. I did my usual note, stating where I was, when I would be home, and wrote down my cell number for him to call if he needed me. It is now getting dark here pretty early. I actually got home at 4:50 (10 minutes earlier than I wrote on the note). He was pacing and a nervous wreck.
"It's dark out! Something could have happened! I almost called the police!"
To his credit, he did call my cell phone, but I did not hear it! It was in my purse, and there must have been competing noise that prevented me from hearing it.
So, it has been a rough week for Jim. But it has been a week of learning for me, and for that I am grateful. The last couple of years his response to minor discomfort has always seemed overblown to me. I guess I just chalked it up to a psychological exaggeration, perhaps fueled by anxiety. And maybe anxiety is a part of it, but now I know that the pain is real and is experienced at a higher level for Jim, than it would for me.
I did not make it to the support group this week. After the rough week for Jim, I just didn't dare leave him again, especially since it was an evening group. I don't know what I am going to do about that, but I will figure it out.
On the lighter side, I was experiencing a very strong hot flash (yes, still having them after all these years!) and I told Jim I was going to step outside to cool off for a couple of minutes. Next thing I know, he opens the door
"Are you all right??!!"
"Yes, I'll be back inside in another 2 or 3 minutes, once this hot flash passes."
This gets repeated at least 3 more times in the time span of less than 2 minutes. Next thing I know, he has joined me outside with his down jacket on and says "I thought I would keep you company."
Kind of like the young mom who locks herself in the bathroom for 5 minutes, just to have her toddlers banging on the door for her :-)
Well, another challenging week has passed. I'm learning! And I like that. One of the more interesting observations that I had with the dental experience is that while I was embarrassed for the cruel things he said, the other (stronger) emotion I experienced was compassion for Jim in his very real struggle to get through what was a very difficult experience for him. Another step forward in my transition as a caregiver. For that I am grateful.
Once again, thank you dear readers for stopping by. You are all such great listeners, and I am grateful for each one of you.
Jim has been going to the same dentist for many years. The dental practice was about a 40 minute drive from our home. In addition, Jim was becoming less happy with the practice. I don't know the basis for his dissatisfaction, as he had a hard time clearly articulating his concerns. He drove to his last appointment 6 months ago.
Given the issues with driving and his increasing unhappiness with his dentist, I suggested he switch to my dentist. Much closer, and her practice is great. She specializes in gentle dentistry. The appointment was made. I called ahead of time to make certain that the dentist, hygienist, and office staff knew about Jim's dementia. I thanked them ahead of time for their patience and understanding.
Jim takes very good care of his teeth. We didn't expect much at the appointment, other than some x-rays that were due, routine cleaning, and check up by the dentist. Jim asked me to come into the exam room with him, which I was glad to do.
It was just short of a disaster.
The x-rays were "painful" (his word) as he held the x-ray apparatus in his mouth. The cleaning caused additional pain for him, and he was quite vocal about it. I felt bad for the hygienist. She was on pins and needles from the moment Jim started insulting her. This of course made it worse, as her hands were shaking and she was having difficulty manipulating her instruments because of her nervousness.
Jim called for her to be fired. He complained loudly to everyone who could hear about how she hurt him badly. Once home, he insisted that I call the office and demand our money back. And, he started talking about a lawsuit against the hygienist! Oh my.
I fibbed, and told him that we were reimbursed for the cost of the visit. Regarding the lawsuit, I started talking about the thousands of dollars we would need to pay, for a lawsuit with an uncertain outcome. He let that drop. But he was still so angry about the hygienist. I appeased him by telling him that I was certain she would be fired.
I know that sounds crazy, but what else could I do? My goal became one of helping him to get to a place of calm. We're still not there yet, but it's better.
Here's what I didn't know: dementia alters a persons perception of pain. They experience pain at a higher level than those without dementia. MRI's have verified this with areas of the brain that light up when someone experiences pain. The research showed that someone with dementia is much more sensitive to painful stimuli. You can check out a very interesting article from Science Daily here.
If I had known this, I would have asked for pre-treatment pain medication. He somehow made it through the appointment, albeit very unhappy and pretty angry. His teeth are perfect, and he needs no additional work, thank goodness.
And it's not over yet. Apparently the hygienist slightly nicked an area close to the gum line. I'm guessing it occurred when he was moving around in the chair, combined with her shaking hands. He complained mightily for 2 days. I honestly couldn't see it. I called the office and arranged for the dentist to look at it. She showed me with the magnified mirror the tiny nick that was causing him so much pain. She compared it to a nick you might get from a sharp potato chip. She reassured him, advised tylenol, bland diet and warm salt water rinses for the next few days. Every day, he has me look in his mouth to check on the progress, and this of course triggers another rant about the hygienist.
There was a silver lining in this experience. The dentist and all of her staff were wonderful. I was of course mortified at the cruel things he was saying to the hygienist. But in spite of his melt down, everyone treated him with the utmost kindness and respect. I will always remember and be grateful for that. I have written a thank you note to the staff that will go out in tomorrow's mail.
The other day I had my own doctor's appointment. It was for 3:30 in the afternoon. I did my usual note, stating where I was, when I would be home, and wrote down my cell number for him to call if he needed me. It is now getting dark here pretty early. I actually got home at 4:50 (10 minutes earlier than I wrote on the note). He was pacing and a nervous wreck.
"It's dark out! Something could have happened! I almost called the police!"
To his credit, he did call my cell phone, but I did not hear it! It was in my purse, and there must have been competing noise that prevented me from hearing it.
So, it has been a rough week for Jim. But it has been a week of learning for me, and for that I am grateful. The last couple of years his response to minor discomfort has always seemed overblown to me. I guess I just chalked it up to a psychological exaggeration, perhaps fueled by anxiety. And maybe anxiety is a part of it, but now I know that the pain is real and is experienced at a higher level for Jim, than it would for me.
I did not make it to the support group this week. After the rough week for Jim, I just didn't dare leave him again, especially since it was an evening group. I don't know what I am going to do about that, but I will figure it out.
On the lighter side, I was experiencing a very strong hot flash (yes, still having them after all these years!) and I told Jim I was going to step outside to cool off for a couple of minutes. Next thing I know, he opens the door
"Are you all right??!!"
"Yes, I'll be back inside in another 2 or 3 minutes, once this hot flash passes."
This gets repeated at least 3 more times in the time span of less than 2 minutes. Next thing I know, he has joined me outside with his down jacket on and says "I thought I would keep you company."
Kind of like the young mom who locks herself in the bathroom for 5 minutes, just to have her toddlers banging on the door for her :-)
Well, another challenging week has passed. I'm learning! And I like that. One of the more interesting observations that I had with the dental experience is that while I was embarrassed for the cruel things he said, the other (stronger) emotion I experienced was compassion for Jim in his very real struggle to get through what was a very difficult experience for him. Another step forward in my transition as a caregiver. For that I am grateful.
Once again, thank you dear readers for stopping by. You are all such great listeners, and I am grateful for each one of you.
Saturday, November 12, 2016
No Days Off for Dementia
Every day. Yes, it is every day. Dementia does not offer any days off. Not for Jim, and not for me. But, I feel like I am emotionally starting the transition that will help me to find peace and contentment with this altered life of ours.
One of my fellow dementia bloggers and I have been corresponding a bit my email. She has been "in the game" for a longer period of time than I have been. Her gracious and helpful emails have just been a breath of fresh air for me. She observed that once she accepted that caregiving is her life, things started to flow a little easier. This, as opposed to trying to maintain what was a "normal" life, and working in the caregiving around life as she knew it.
So there you have it. Sounds simple enough, but I know that this transition is psychological and emotional. It is a journey that every caregiver must go through. I've been doing a lot of reading lately related to dementia caregiving. As I read about others' experiences it helps me. It helps me feel less alone, it gives me hope that I can do this, and it gives me some guidance for this journey.
Jim has some compulsions that are difficult for both of us. It causes him anxiety, and in turn causes me anxiety as I try so hard to make things right. He is very compulsive about clothing. He always was a very snappy dresser. With the progression of his dementia, this has turned into an obsession over the minutiae of his clothing articles. Almost every day, we are headed to one store or another in search of t-shirts, blue jeans, socks, long sleeve shirts, the list goes on. NONE are acceptable. He will focus on imperceptible imperfections, as he sees them, and then rules out any purchases. He gets so frustrated.
I feel so sorry for him. I can't imagine how hard this must be for him. I'm getting better at just saying "let's go look in another store". At least it gives him a purpose, and something to do. And, it works much better than trying to talk him into buying something that he sees as imperfect. That just doesn't work, and makes him even more frustrated. When he sees the gerontologist I will make sure she is aware of this issue. A little medication to ease his anxiety would likely help a lot.
I recently discovered some new local resources through our county's Office of Aging. They operate separately from the Alzheimers Association. They offer courses, classes, consultations, and resources for the caregiver. In addition, I discovered a support group that is even closer to my home, with meetings every other Thursday. I'm looking forward to attending this support group. It is getting harder for me to leave Jim alone, even with all my reassuring notes I leave him when I have to leave. So I'm grateful to have a group so close to my home. Hopefully it is a good fit for me.
I drove him to his haircut appointment yesterday. It was interesting to me that as we travelled along the highway, he was uncertain which exit he should take. This is after many, many years of driving here to get his haircut. It just reinforces the decision I made that I need to be doing all the driving.
Holidays will look different this year. Usually family (30+) gathers at our house. This year, Jim and I, my disabled brother, and my brother whom I am very close to, and his family will take a Wegmans prepared T'giving dinner to my mom's. There will be 8 of us. Disposable dinnerware makes clean up very easy. I am so relieved to not have to think about a huge party at our house!
Today we went to Home Depot and purchased a very cute artificial Christmas tree that is is only 4 1/2 feet tall. I can carry it by myself up and down from the basement. The last couple of years we have struggled to get our 7 1/2 foot tree up and down the stairs. Last year was very shaky. Jim has definitely lost some of his dexterity and balance.
Downsizing holidays, a smaller Christmas tree, these are all signs of my transition to accepting that caregiving is my life. I'll continue to hope, plan and strive for the grace and understanding that comes with thoughtful caregiving.
Another post has been written, and as always, I find it therapeutic to be able to share my thoughts with my dear readers. So thanks for stopping by, for listening and for caring. And until next time....
One of my fellow dementia bloggers and I have been corresponding a bit my email. She has been "in the game" for a longer period of time than I have been. Her gracious and helpful emails have just been a breath of fresh air for me. She observed that once she accepted that caregiving is her life, things started to flow a little easier. This, as opposed to trying to maintain what was a "normal" life, and working in the caregiving around life as she knew it.
So there you have it. Sounds simple enough, but I know that this transition is psychological and emotional. It is a journey that every caregiver must go through. I've been doing a lot of reading lately related to dementia caregiving. As I read about others' experiences it helps me. It helps me feel less alone, it gives me hope that I can do this, and it gives me some guidance for this journey.
Jim has some compulsions that are difficult for both of us. It causes him anxiety, and in turn causes me anxiety as I try so hard to make things right. He is very compulsive about clothing. He always was a very snappy dresser. With the progression of his dementia, this has turned into an obsession over the minutiae of his clothing articles. Almost every day, we are headed to one store or another in search of t-shirts, blue jeans, socks, long sleeve shirts, the list goes on. NONE are acceptable. He will focus on imperceptible imperfections, as he sees them, and then rules out any purchases. He gets so frustrated.
I feel so sorry for him. I can't imagine how hard this must be for him. I'm getting better at just saying "let's go look in another store". At least it gives him a purpose, and something to do. And, it works much better than trying to talk him into buying something that he sees as imperfect. That just doesn't work, and makes him even more frustrated. When he sees the gerontologist I will make sure she is aware of this issue. A little medication to ease his anxiety would likely help a lot.
I recently discovered some new local resources through our county's Office of Aging. They operate separately from the Alzheimers Association. They offer courses, classes, consultations, and resources for the caregiver. In addition, I discovered a support group that is even closer to my home, with meetings every other Thursday. I'm looking forward to attending this support group. It is getting harder for me to leave Jim alone, even with all my reassuring notes I leave him when I have to leave. So I'm grateful to have a group so close to my home. Hopefully it is a good fit for me.
I drove him to his haircut appointment yesterday. It was interesting to me that as we travelled along the highway, he was uncertain which exit he should take. This is after many, many years of driving here to get his haircut. It just reinforces the decision I made that I need to be doing all the driving.
Holidays will look different this year. Usually family (30+) gathers at our house. This year, Jim and I, my disabled brother, and my brother whom I am very close to, and his family will take a Wegmans prepared T'giving dinner to my mom's. There will be 8 of us. Disposable dinnerware makes clean up very easy. I am so relieved to not have to think about a huge party at our house!
Today we went to Home Depot and purchased a very cute artificial Christmas tree that is is only 4 1/2 feet tall. I can carry it by myself up and down from the basement. The last couple of years we have struggled to get our 7 1/2 foot tree up and down the stairs. Last year was very shaky. Jim has definitely lost some of his dexterity and balance.
Downsizing holidays, a smaller Christmas tree, these are all signs of my transition to accepting that caregiving is my life. I'll continue to hope, plan and strive for the grace and understanding that comes with thoughtful caregiving.
Another post has been written, and as always, I find it therapeutic to be able to share my thoughts with my dear readers. So thanks for stopping by, for listening and for caring. And until next time....
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