Oh lena0820! We are nearly twins! My LO and I always rant at our new family member, Lewy, too. He wasn't invited, doesn't pay rent, disturbs our precious sleep, and is a generally annoying intruder! My Lo lost 60 pounds and is just now starting to struggle with dressing. Otherwise, he is fairly capable of performing his ADLs. My son and his family are in Newton (Waban) and often spend summers in Cape Cod. It is beautiful! I will keep you in my daily prayers. By the way, I have a T-shirt that reads "My Patience Were Tested...I'm Negative!" I think all caregivers should have two or three of them!! Good luck with your move to Cape Cod.
WOW --- I'm originally from Worcester & the Cape. My LO from Salem. Family all over Eastern MA. I am trying to write a daily journal (too busy lately) entitled "The Uninvited Companion - Journeying with Lewy". Maybe I'll try to get it published someday.
I keep telling people that I had my patience tested-- and I'm negative. Never did have much patience, but I'm working really hard on it now--as I'm sure you are.
I will keep you in my prayers as well. As a friend told me earlier in the year, our LOs are in God's hands. It helps to remember that & that we caregivers can't fix this. You might enjoy the book "Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief". I found it invaluable.
Hi. I share your challenge with incontinence care for my husband. Oddly, one thing that has helped me is letting go of the expectation that he would try to help with the problem—-like stopping drinking fluids two hours before bedtime, like sitting on the toilet rather than standing up and missing the toilet. I’ve come to accept that the incontinence isn’t going to change and that has helped me not feel so frustrated. Lonely? Yes. Sad? YES. Wishing for just a few minutes a day “off duty?” Yes! I don’t have answers for those. I hope you find a path to peacefulness. Hugs.
I’m new to forum. Caregiver 24/7 for friend with Parkinson’s. He constantly wets his pull-ups and his brain cannot hold back after the he urge hits.
Knowing it’s the brain. I remind him with assistance to take quick shower. In addition, I set an alarm every 2 hrs during the day prior to 7:00pm for him to urinate.
That’s all we can do.
I also reach out and have maid service monthly to scrub bathrooms etc.
as caregiver I made stipulations whether married or Friends:
1. Put in assisted living facility; or
2. I receive a small amount of cash if the house is used to pay for assisted living.
In addition, I make the house as it’s my house to decorate. Married or not.
Last but least, I have joined activity groups like wine tours of gardens, kayak paddler beginners, and computer security groups who meet monthly.
In order to decrease the mortality rate of caregivers, it is necessary to “pay for sitters” to get away rather than “control” everything!
We need our own time and BOT be isolated!
I’m new to forum. Caregiver 24/7 for friend with Parkinson’s. He constantly wets his pull-ups and his brain cannot hold back after the he urge hits.
Knowing it’s the brain. I remind him with assistance to take quick shower. In addition, I set an alarm every 2 hrs during the day prior to 7:00pm for him to urinate.
That’s all we can do.
I also reach out and have maid service monthly to scrub bathrooms etc.
as caregiver I made stipulations whether married or Friends:
1. Put in assisted living facility; or
2. I receive a small amount of cash if the house is used to pay for assisted living.
In addition, I make the house as it’s my house to decorate. Married or not.
Last but least, I have joined activity groups like wine tours of gardens, kayak paddler beginners, and computer security groups who meet monthly.
In order to decrease the mortality rate of caregivers, it is necessary to “pay for sitters” to get away rather than “control” everything!
We need our own time and BOT be isolated!
@rocketmom I like your idea of being paid for your work. Think of the hundreds of unpaid caregivers! I have a friend who is paid by a county agency to provide 24/7 care for a man with Parkinson’s.
How do people react when you tell them of pay requirement and home decorating?
Hello,
I'm no longer a caregiver but l think l can at least imagine what you're going through. Wish you strenght, tons of patience and perseverance, hoping you'll have a better time and support in Cape Code. Actually, l just wanted to say that l have the same t-shirt, don't even wear it...
All the best💐🙏
@rocketmom I like your idea of being paid for your work. Think of the hundreds of unpaid caregivers! I have a friend who is paid by a county agency to provide 24/7 care for a man with Parkinson’s.
How do people react when you tell them of pay requirement and home decorating?
I always receive positive replies because the individual wants to remain in their homes rather than go to assisted living or nursing homes.
This choice depletes everything they’ve worked for. Loss of savings and home if one cannot afford payments. If loss of all, he would be forced to a Medicaid facility.
I am trying to keep him in his home with care.
I’m new to forum. Caregiver 24/7 for friend with Parkinson’s. He constantly wets his pull-ups and his brain cannot hold back after the he urge hits.
Knowing it’s the brain. I remind him with assistance to take quick shower. In addition, I set an alarm every 2 hrs during the day prior to 7:00pm for him to urinate.
That’s all we can do.
I also reach out and have maid service monthly to scrub bathrooms etc.
as caregiver I made stipulations whether married or Friends:
1. Put in assisted living facility; or
2. I receive a small amount of cash if the house is used to pay for assisted living.
In addition, I make the house as it’s my house to decorate. Married or not.
Last but least, I have joined activity groups like wine tours of gardens, kayak paddler beginners, and computer security groups who meet monthly.
In order to decrease the mortality rate of caregivers, it is necessary to “pay for sitters” to get away rather than “control” everything!
We need our own time and BOT be isolated!
Good morning, @alone I'm Scott, and I was my wife's caregiver for her 14+ year war with brain cancer. I came to Connect because I was feeling so incredibly overwhelmed and isolated by my caregiving.
Caregiving, at least for me, was a constantly changing scenario. Often those changes occurred literally overnight. You mentioned toileting and memory. What questions do you have about those?
I'm happy to share my experiences and what I learned during our journey.
Hi Scott (@IndianaScott). I'm 79 yo husband caring for 75 yo wife who struggles with a host of serious health issues. I haven't heard of Lewy Body Disease till today. She hasn't been diagnosed with that. I'm disabled with cerebellar ataxia but I push myself to exercise as much as I can. Dealing with depression (lifelong) I see a mental health counselor and receive Transcranial Magnetic Stimulation (TMS) to help me cope with increasing isolation and discouragement. She refuses to go to an assisted living facility. She wavers between mentally sharp and mentally adrift. She's in constant pain. A major concern is her COPD. Another is PTSD from spending two weeks in a dreadful rehab facility after more than a week in the hospital. I'm doing the best I can but it's a real struggle. I have no intention of leaving my dear wife, but I wonder if you have any thoughts about what I might do.
Hi Scott (@IndianaScott). I'm 79 yo husband caring for 75 yo wife who struggles with a host of serious health issues. I haven't heard of Lewy Body Disease till today. She hasn't been diagnosed with that. I'm disabled with cerebellar ataxia but I push myself to exercise as much as I can. Dealing with depression (lifelong) I see a mental health counselor and receive Transcranial Magnetic Stimulation (TMS) to help me cope with increasing isolation and discouragement. She refuses to go to an assisted living facility. She wavers between mentally sharp and mentally adrift. She's in constant pain. A major concern is her COPD. Another is PTSD from spending two weeks in a dreadful rehab facility after more than a week in the hospital. I'm doing the best I can but it's a real struggle. I have no intention of leaving my dear wife, but I wonder if you have any thoughts about what I might do.
Good morning, @srhappy I'm sorry for your circumstances but pleased you found this community! I found Connect when I was searching for something, anything, to help me cope with the intense isolation that comes with primary caregiving.
Caregiving is a tough load to haul in life and I wish I had some stellar advice for you. I've not found any magic potion to help, but here are a few things we did that helped my wife and me.
We found home hospice care to be a godsend for us and was truly the first patient-centered care we found for my wife. They were especially adept at her pain and anxiety management needs. Neither of these was managed as well for her prior to our use of home hospice.
My wife's breathing was a constant concern so I worked to get her to keep her pulse-ox meter on her finger almost all the time. It really helped me with my monitoring of her.
Regarding my own struggles with my depression during my wife's journey, I tried (with varying levels of success) to take "minute vacations" where I'd ask Siri or Alexa to set a two-minute timer and I'd send that tiny bit of time trying to zone out and calm myself. I also tried to train myself to check in on Connect sometime each day. It helped me feel less alone and even if all I did was a quick vent, it did really help me.
One of the resources I found helpful was the Rosalynn Carter Institute for Caregivers site. You can find it at this link: https://rosalynncarter.org/ I like their approach to caregivers and not just caregiving.
Please feel free to let me know more of your thoughts and questions! We are all in this maelstrom of caregiving together, even though we so often feel alone!
Good morning, @srhappy I'm sorry for your circumstances but pleased you found this community! I found Connect when I was searching for something, anything, to help me cope with the intense isolation that comes with primary caregiving.
Caregiving is a tough load to haul in life and I wish I had some stellar advice for you. I've not found any magic potion to help, but here are a few things we did that helped my wife and me.
We found home hospice care to be a godsend for us and was truly the first patient-centered care we found for my wife. They were especially adept at her pain and anxiety management needs. Neither of these was managed as well for her prior to our use of home hospice.
My wife's breathing was a constant concern so I worked to get her to keep her pulse-ox meter on her finger almost all the time. It really helped me with my monitoring of her.
Regarding my own struggles with my depression during my wife's journey, I tried (with varying levels of success) to take "minute vacations" where I'd ask Siri or Alexa to set a two-minute timer and I'd send that tiny bit of time trying to zone out and calm myself. I also tried to train myself to check in on Connect sometime each day. It helped me feel less alone and even if all I did was a quick vent, it did really help me.
One of the resources I found helpful was the Rosalynn Carter Institute for Caregivers site. You can find it at this link: https://rosalynncarter.org/ I like their approach to caregivers and not just caregiving.
Please feel free to let me know more of your thoughts and questions! We are all in this maelstrom of caregiving together, even though we so often feel alone!
Thank you @IndianaScott for your thoughtful response and reference to the Rosalynn Carter Institute for Caregivers site. She and her husband set an example of living courageously in the real world where poverty invites housing construction and material support for the disadvantaged. We need such examples to show us a better way of being human. I will try to connect more regularly to the Mayo Clinic Connect caregiving group support. Even, as you wrote, just to vent.
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WOW --- I'm originally from Worcester & the Cape. My LO from Salem. Family all over Eastern MA. I am trying to write a daily journal (too busy lately) entitled "The Uninvited Companion - Journeying with Lewy". Maybe I'll try to get it published someday.
I keep telling people that I had my patience tested-- and I'm negative. Never did have much patience, but I'm working really hard on it now--as I'm sure you are.
I will keep you in my prayers as well. As a friend told me earlier in the year, our LOs are in God's hands. It helps to remember that & that we caregivers can't fix this. You might enjoy the book "Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief". I found it invaluable.
Let's hang in there together! Lena
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Hug
6 ReactionsI’m new to forum. Caregiver 24/7 for friend with Parkinson’s. He constantly wets his pull-ups and his brain cannot hold back after the he urge hits.
Knowing it’s the brain. I remind him with assistance to take quick shower. In addition, I set an alarm every 2 hrs during the day prior to 7:00pm for him to urinate.
That’s all we can do.
I also reach out and have maid service monthly to scrub bathrooms etc.
as caregiver I made stipulations whether married or Friends:
1. Put in assisted living facility; or
2. I receive a small amount of cash if the house is used to pay for assisted living.
In addition, I make the house as it’s my house to decorate. Married or not.
Last but least, I have joined activity groups like wine tours of gardens, kayak paddler beginners, and computer security groups who meet monthly.
In order to decrease the mortality rate of caregivers, it is necessary to “pay for sitters” to get away rather than “control” everything!
We need our own time and BOT be isolated!
-
Like -
Helpful -
Hug
5 Reactions@rocketmom I like your idea of being paid for your work. Think of the hundreds of unpaid caregivers! I have a friend who is paid by a county agency to provide 24/7 care for a man with Parkinson’s.
How do people react when you tell them of pay requirement and home decorating?
Hello,
I'm no longer a caregiver but l think l can at least imagine what you're going through. Wish you strenght, tons of patience and perseverance, hoping you'll have a better time and support in Cape Code. Actually, l just wanted to say that l have the same t-shirt, don't even wear it...
All the best💐🙏
-
Like -
Helpful -
Hug
2 ReactionsI always receive positive replies because the individual wants to remain in their homes rather than go to assisted living or nursing homes.
This choice depletes everything they’ve worked for. Loss of savings and home if one cannot afford payments. If loss of all, he would be forced to a Medicaid facility.
I am trying to keep him in his home with care.
-
Like -
Helpful -
Hug
4 Reactions@rocketmom, you may also wish to join other caregivers as well as patients living with PD in this support group:
- Parkinson's Disease Support Group https://connect.mayoclinic.org/group/parkinsons-disease/
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3 ReactionsSo am I. Thankfully, he is a sweetheart and needs are not overwhelming right now, but the worry consumes me at times.
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2 ReactionsHi Scott (@IndianaScott). I'm 79 yo husband caring for 75 yo wife who struggles with a host of serious health issues. I haven't heard of Lewy Body Disease till today. She hasn't been diagnosed with that. I'm disabled with cerebellar ataxia but I push myself to exercise as much as I can. Dealing with depression (lifelong) I see a mental health counselor and receive Transcranial Magnetic Stimulation (TMS) to help me cope with increasing isolation and discouragement. She refuses to go to an assisted living facility. She wavers between mentally sharp and mentally adrift. She's in constant pain. A major concern is her COPD. Another is PTSD from spending two weeks in a dreadful rehab facility after more than a week in the hospital. I'm doing the best I can but it's a real struggle. I have no intention of leaving my dear wife, but I wonder if you have any thoughts about what I might do.
-
Like -
Helpful -
Hug
6 ReactionsGood morning, @srhappy I'm sorry for your circumstances but pleased you found this community! I found Connect when I was searching for something, anything, to help me cope with the intense isolation that comes with primary caregiving.
Caregiving is a tough load to haul in life and I wish I had some stellar advice for you. I've not found any magic potion to help, but here are a few things we did that helped my wife and me.
We found home hospice care to be a godsend for us and was truly the first patient-centered care we found for my wife. They were especially adept at her pain and anxiety management needs. Neither of these was managed as well for her prior to our use of home hospice.
My wife's breathing was a constant concern so I worked to get her to keep her pulse-ox meter on her finger almost all the time. It really helped me with my monitoring of her.
Regarding my own struggles with my depression during my wife's journey, I tried (with varying levels of success) to take "minute vacations" where I'd ask Siri or Alexa to set a two-minute timer and I'd send that tiny bit of time trying to zone out and calm myself. I also tried to train myself to check in on Connect sometime each day. It helped me feel less alone and even if all I did was a quick vent, it did really help me.
One of the resources I found helpful was the Rosalynn Carter Institute for Caregivers site. You can find it at this link: https://rosalynncarter.org/ I like their approach to caregivers and not just caregiving.
Please feel free to let me know more of your thoughts and questions! We are all in this maelstrom of caregiving together, even though we so often feel alone!
Strength, Courage, & Peace
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Like -
Helpful -
Hug
6 ReactionsThank you @IndianaScott for your thoughtful response and reference to the Rosalynn Carter Institute for Caregivers site. She and her husband set an example of living courageously in the real world where poverty invites housing construction and material support for the disadvantaged. We need such examples to show us a better way of being human. I will try to connect more regularly to the Mayo Clinic Connect caregiving group support. Even, as you wrote, just to vent.
-
Like -
Helpful -
Hug
6 Reactions