Good morning, @alone! My caregiving experience is for my husband who was diagnosed almost 4 years ago with Lewy Body Disease (dementia). He is not incontinent yet. He's unable to dress himself, read, retrieve words, understand the concept of time, or do most anything. It's heartbreaking to (in reality) watch your loved one slowly die. Caregiving is journey that can only be accomplished in my opinion through love, praying for patience, and little (I mean LITTLE) breaks. Often if I can take a 10-minute break and talk to someone to hear a clear sentence spoken to me, I am good for another day. I rely on God to be by my side and give me strength. I also try to find the humor in our situation and laugh. Going to my support group once a month, gives me a perspective that is helpful. I can lay my feelings on the table, hear helpful hints from others, and realize that I am in better shape than most. Stay connected with groups like this and ask lots of questions. Over the years, I can see a huge change in myself. For one, I am more patient now. However, the goal line of ENOUGH patience keeps moving further away! I believe that my husband is providing me an opportunity to become a better person. Just continue to love. I will keep you in my thoughts and prayers. Hugs!
I like your mention of patience especially. I’ve always been a patient person but it wears thin more quickly now. You are absolutely correct that the goal line keeps moving. This is a very helpful post. Thank you for it!
Good morning, @alone! My caregiving experience is for my husband who was diagnosed almost 4 years ago with Lewy Body Disease (dementia). He is not incontinent yet. He's unable to dress himself, read, retrieve words, understand the concept of time, or do most anything. It's heartbreaking to (in reality) watch your loved one slowly die. Caregiving is journey that can only be accomplished in my opinion through love, praying for patience, and little (I mean LITTLE) breaks. Often if I can take a 10-minute break and talk to someone to hear a clear sentence spoken to me, I am good for another day. I rely on God to be by my side and give me strength. I also try to find the humor in our situation and laugh. Going to my support group once a month, gives me a perspective that is helpful. I can lay my feelings on the table, hear helpful hints from others, and realize that I am in better shape than most. Stay connected with groups like this and ask lots of questions. Over the years, I can see a huge change in myself. For one, I am more patient now. However, the goal line of ENOUGH patience keeps moving further away! I believe that my husband is providing me an opportunity to become a better person. Just continue to love. I will keep you in my thoughts and prayers. Hugs!
In 2022, my husband was diagnosed with LBD, our newfound companion. His battle with this condition has led to a loss of balance and a significant decline in executive and spatial reasoning abilities. He's always been one of the brightest individuals I've known and my closest friend for nearly four decades. Witnessing his decline breaks my heart.
Adding to our challenges, my mother, who also suffers from dementia, resides with us. This past year has been a whirlwind: losing my father, selling a house in Arizona, and relocating to Washington to be closer to family. It's been a profound learning curve.
One of the most valuable resources for me has been a virtual caregiving class through the University of Washington tailored for those caring for individuals with LBD. This course helped prepare me for moments like my husband's first delusion and the heartbreaking instance when he didn't recognize me. Sometimes, leaning on my husband's shoulder and shedding tears provides a sense of relief, perhaps even a touch of catharsis for both of us.
I extend my best wishes to everyone on their respective journeys. May we find solace in the collective companionship and support, lessening the weight of loneliness along our paths.
Here are some things that have profoundly helped me:
1. Dementia Books:
- The 36-hour day
- contented dementia
- a caregiver’s guide to Lewy Body Dementia
2. Virtual classes thru the Alzheimer’s Association, the University of WA, and groups like this one
3. Taking time for short calls with family and friends
4. Being aware of my stress and taking daily short breaks to breathe, mediate, do sound therapy and/or exercise. I find short breaks work better for me and my loved ones.
5. Rest! I’ve learned how to unwind better at the end of the day by eliminating electronics, turning down the lights, light reading, drinking a calming tea, etc.
6. Asking for help when I really need it. Having my husband’s friends come to visit and doing my best to make it fun for them.
7. Creating an opportunity in my home for caregivers and their loved ones to gather for singing and music.
8. Giving my husband easy tasks he can still do. He can still sweep the floor with some help and load the dishwasher for example. He doesn’t do it “well” but it gives him a sense of well-being, feeling that he has helped.
9. Use community resources for classes, daycare, informational brochures, etc
Hope something in there gives you hope and support.
Just looking into services that Medicare will cover & have found they will
send a PO & an OT for s mall # of sessions, but just that let me leave for
awhile & be alone. After reading the responses, I will look into caregiver
support groups as I think our retirement community might have one.
Thank you all!!
KayMat
Dear Lena0820, Where strength comes from to deal with the list of challenges we all have amazes me. Recently, I said to my LO that I was depressed as if he could come up with a solution. The response was, "But why? Life is wonderful." And, so it is for him because I keep him happy, clean, fed, entertained, and have taken on all the responsibilities to keep us in the home that provides him stability. We have been at this for over ten years, which included a colostomy that required five weeks in the hospital and a month in a nursing home. By now, I could give lessons to the nurses at our hospital on how to change a colostomy. What I can't do is make him remember how to clean it properly which he insists on doing himself. If anyone needs info on cleaning products, just ask me. As I write this, I realize that one of my strategies to survive is humor, even if it is black humor. The only way this ends for us is if one of us ends. I am 86, and he is 94. The tough part is he has longevity on his side. His father lived to 103. After I recently had to start taking anti-depressants, I decided to change my perspective. My needs must come first for both our sakes as I have now become the person who does not want to shower. That means putting an app on my laptop so that I can shop online and pick up at the store and making my prescription app on my phone work for me. (This required help.) Also, our cleaning woman's daughter has agreed to give us four hours once a month with the possibility of more time. And I am putting up as many reminder notes as it takes to make taking care of myself a daily habit. Using this forum to fight isolation is also part of the plan. I don't know if it will work, but what I do know is that doing nothing is not an option.
We have relied on Meals-on-Wheels and ladies who do minor house cleaning because I use a walker for my back and knees, which are painful and make the simplest tasks an effort. This month, I have been fortunate to find reliable assistance for four hours a month. I'm not sure what I need from her, but we will figure it out together. I hope this litany of ills helps you realize there is more strength in us than we realize. Use some of that patience you have developed for your LO's care for yourself. @gloro
Dear Lena0820, Where strength comes from to deal with the list of challenges we all have amazes me. Recently, I said to my LO that I was depressed as if he could come up with a solution. The response was, "But why? Life is wonderful." And, so it is for him because I keep him happy, clean, fed, entertained, and have taken on all the responsibilities to keep us in the home that provides him stability. We have been at this for over ten years, which included a colostomy that required five weeks in the hospital and a month in a nursing home. By now, I could give lessons to the nurses at our hospital on how to change a colostomy. What I can't do is make him remember how to clean it properly which he insists on doing himself. If anyone needs info on cleaning products, just ask me. As I write this, I realize that one of my strategies to survive is humor, even if it is black humor. The only way this ends for us is if one of us ends. I am 86, and he is 94. The tough part is he has longevity on his side. His father lived to 103. After I recently had to start taking anti-depressants, I decided to change my perspective. My needs must come first for both our sakes as I have now become the person who does not want to shower. That means putting an app on my laptop so that I can shop online and pick up at the store and making my prescription app on my phone work for me. (This required help.) Also, our cleaning woman's daughter has agreed to give us four hours once a month with the possibility of more time. And I am putting up as many reminder notes as it takes to make taking care of myself a daily habit. Using this forum to fight isolation is also part of the plan. I don't know if it will work, but what I do know is that doing nothing is not an option.
We have relied on Meals-on-Wheels and ladies who do minor house cleaning because I use a walker for my back and knees, which are painful and make the simplest tasks an effort. This month, I have been fortunate to find reliable assistance for four hours a month. I'm not sure what I need from her, but we will figure it out together. I hope this litany of ills helps you realize there is more strength in us than we realize. Use some of that patience you have developed for your LO's care for yourself. @gloro
@gloro, what a wonderful post. I appreciate knowing that you are someone who can offer experience and tips about living with a colostomy or, more specifically, caring for someone with a colostomy. There is a forum specific to ostomy on Mayo Clinic Connect that you may wish to follow (time and energy permitting):
- Ostomy Support Group https://connect.mayoclinic.org/group/ostomy/
You mentioned that you've found someone to offer assistance for a few hours a month. Have you found a good way to use her assistance that gives you respite?
I would be interested in communicating with others as well. I’ve been a caregiver for 7 years. It gets lonely and it would be nice to be able to express things to people who understand without judgement. Im not sure how to connect with people here but I would be willing to chat with you.
I'm scared every day. My husband was dx'd with pancreatic cancer last April and I wake up every day waiting for the nightmare to go away but this nightmare doesn't
I pray every day for lots more days with him🙏🏽
I would be interested in communicating with others as well. I’ve been a caregiver for 7 years. It gets lonely and it would be nice to be able to express things to people who understand without judgement. Im not sure how to connect with people here but I would be willing to chat with you.
@msberen This is a very good group. Everyone is more than willing to help each other. Have you checked in your area for a caregivers support group?
Can you tell us who you are providing care for and how it has been for you?
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April 15! I was born in Riverside,CA. Haven't ever lived there. My dad was in the service and was killed at the end of the war, so my mother moved.
I like your mention of patience especially. I’ve always been a patient person but it wears thin more quickly now. You are absolutely correct that the goal line keeps moving. This is a very helpful post. Thank you for it!
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Hug
5 ReactionsIn 2022, my husband was diagnosed with LBD, our newfound companion. His battle with this condition has led to a loss of balance and a significant decline in executive and spatial reasoning abilities. He's always been one of the brightest individuals I've known and my closest friend for nearly four decades. Witnessing his decline breaks my heart.
Adding to our challenges, my mother, who also suffers from dementia, resides with us. This past year has been a whirlwind: losing my father, selling a house in Arizona, and relocating to Washington to be closer to family. It's been a profound learning curve.
One of the most valuable resources for me has been a virtual caregiving class through the University of Washington tailored for those caring for individuals with LBD. This course helped prepare me for moments like my husband's first delusion and the heartbreaking instance when he didn't recognize me. Sometimes, leaning on my husband's shoulder and shedding tears provides a sense of relief, perhaps even a touch of catharsis for both of us.
I extend my best wishes to everyone on their respective journeys. May we find solace in the collective companionship and support, lessening the weight of loneliness along our paths.
Warm regards,
Kim Possible
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10 ReactionsHere are some things that have profoundly helped me:
1. Dementia Books:
- The 36-hour day
- contented dementia
- a caregiver’s guide to Lewy Body Dementia
2. Virtual classes thru the Alzheimer’s Association, the University of WA, and groups like this one
3. Taking time for short calls with family and friends
4. Being aware of my stress and taking daily short breaks to breathe, mediate, do sound therapy and/or exercise. I find short breaks work better for me and my loved ones.
5. Rest! I’ve learned how to unwind better at the end of the day by eliminating electronics, turning down the lights, light reading, drinking a calming tea, etc.
6. Asking for help when I really need it. Having my husband’s friends come to visit and doing my best to make it fun for them.
7. Creating an opportunity in my home for caregivers and their loved ones to gather for singing and music.
8. Giving my husband easy tasks he can still do. He can still sweep the floor with some help and load the dishwasher for example. He doesn’t do it “well” but it gives him a sense of well-being, feeling that he has helped.
9. Use community resources for classes, daycare, informational brochures, etc
Hope something in there gives you hope and support.
My best to you on your journey.
-
Like -
Helpful -
Hug
13 ReactionsJust looking into services that Medicare will cover & have found they will
send a PO & an OT for s mall # of sessions, but just that let me leave for
awhile & be alone. After reading the responses, I will look into caregiver
support groups as I think our retirement community might have one.
Thank you all!!
KayMat
-
Like -
Helpful -
Hug
2 ReactionsDear Lena0820, Where strength comes from to deal with the list of challenges we all have amazes me. Recently, I said to my LO that I was depressed as if he could come up with a solution. The response was, "But why? Life is wonderful." And, so it is for him because I keep him happy, clean, fed, entertained, and have taken on all the responsibilities to keep us in the home that provides him stability. We have been at this for over ten years, which included a colostomy that required five weeks in the hospital and a month in a nursing home. By now, I could give lessons to the nurses at our hospital on how to change a colostomy. What I can't do is make him remember how to clean it properly which he insists on doing himself. If anyone needs info on cleaning products, just ask me. As I write this, I realize that one of my strategies to survive is humor, even if it is black humor. The only way this ends for us is if one of us ends. I am 86, and he is 94. The tough part is he has longevity on his side. His father lived to 103. After I recently had to start taking anti-depressants, I decided to change my perspective. My needs must come first for both our sakes as I have now become the person who does not want to shower. That means putting an app on my laptop so that I can shop online and pick up at the store and making my prescription app on my phone work for me. (This required help.) Also, our cleaning woman's daughter has agreed to give us four hours once a month with the possibility of more time. And I am putting up as many reminder notes as it takes to make taking care of myself a daily habit. Using this forum to fight isolation is also part of the plan. I don't know if it will work, but what I do know is that doing nothing is not an option.
We have relied on Meals-on-Wheels and ladies who do minor house cleaning because I use a walker for my back and knees, which are painful and make the simplest tasks an effort. This month, I have been fortunate to find reliable assistance for four hours a month. I'm not sure what I need from her, but we will figure it out together. I hope this litany of ills helps you realize there is more strength in us than we realize. Use some of that patience you have developed for your LO's care for yourself. @gloro
-
Like -
Helpful -
Hug
16 Reactions@gloro, what a wonderful post. I appreciate knowing that you are someone who can offer experience and tips about living with a colostomy or, more specifically, caring for someone with a colostomy. There is a forum specific to ostomy on Mayo Clinic Connect that you may wish to follow (time and energy permitting):
- Ostomy Support Group https://connect.mayoclinic.org/group/ostomy/
You mentioned that you've found someone to offer assistance for a few hours a month. Have you found a good way to use her assistance that gives you respite?
-
Like -
Helpful -
Hug
2 ReactionsI would be interested in communicating with others as well. I’ve been a caregiver for 7 years. It gets lonely and it would be nice to be able to express things to people who understand without judgement. Im not sure how to connect with people here but I would be willing to chat with you.
-
Like -
Helpful -
Hug
4 ReactionsI'm scared every day. My husband was dx'd with pancreatic cancer last April and I wake up every day waiting for the nightmare to go away but this nightmare doesn't
I pray every day for lots more days with him🙏🏽
-
Like -
Helpful -
Hug
4 Reactions@msberen This is a very good group. Everyone is more than willing to help each other. Have you checked in your area for a caregivers support group?
Can you tell us who you are providing care for and how it has been for you?