Is anyone else helping someone with a degenerative illness?

[Colecock]

Without going into too much detail, yes. We don’t know what the cause is, and my wife is bedridden. She needs to be transferred via Hoyer lift to a wheelchair. Complete head to toe care. There is no cognitive decline. So she does all of her business on her own, watches TV, scrolls her phone, able to make decisions.

 

[Series 6]

I got to spend the day with my husband and his treatment team. They’re changing his meds, and he’s officially been classified as Huntingtons disease stage 3.. or maybe it’s Stage 3 Huntingtons.

It’s breaking my heart watching him struggle.

I'm going back to college for Human Services / Psychology. One of the things I want to do after graduation is caregiver counseling/support.

 

[Scareltt]

I'm going back to college for Human Services / Psychology. One of the things I want to do after graduation is caregiver counseling/support.

I think it’s great that you’re doing it.

 

[Series 6]

I think it’s great that you’re doing it.

Thanks, do you see a real demand for counseling for caregivers? What do you think would be more successful/popular - group counseling for caregivers or one on one counseling?

I'd like to do counseling for people who are caregivers for an aging parent or partner who s dealing with dementia/Parkinson's disease. Huntington's and ALS would would also be part of that.

I'd also like to do counseling for parents who have a child with intellectual disabilities, especially if their child would require life-long care.

 

[luckylegsat60]

Thanks, do you see a real demand for counseling for caregivers? What do you think would be more successful/popular - group counseling for caregivers or one on one counseling?

I'd like to do counseling for people who are caregivers for an aging parent or partner who s dealing with dementia/Parkinson's disease. Huntington's and ALS would would also be part of that.

I'd also like to do counseling for parents who have a child with intellectual disabilities, especially if their child would require life-long care.

There is definitely a need. In addition to seeing a psychologist, I attended a monthly group meeting especially for caregivers. It was a great group, I learned so much and especially nice being with and knowing others struggled with the same things I did. However, it was the one on one that helped me the most and that is what got me through the especially difficult last 7 years of his life.

I hope you continue to pursue your desire to counsel caregivers and I wish you the best.

 

[Series 6]

There is definitely a need. In addition to seeing a psychologist, I attended a monthly group meeting especially for caregivers. It was a great group, I learned so much and especially nice being with and knowing others struggled with the same things I did. However, it was the one on one that helped me the most and that is what got me through the especially difficult last 7 years of his life.

I hope you continue to pursue your desire to counsel caregivers and I wish you the best.

Thank you for both your encouragement and sharing your experience. It was very helpful and I really appreciate it.

 

[jerfer]

No, but i know that caring for someone with a degenerative illness can be emotionally and physically taxing. It requires immense patience, understanding, and resilience. Seeking support from organizations like Online Pharmacy, which offers resources and medications for managing symptoms, can alleviate some of the burdens. Additionally, ensuring you prioritize self-care is crucial; take breaks, seek respite care, and don't hesitate to ask for help when needed.

 

[luckylegsat60]

No, but i know that caring for someone with a degenerative illness can be emotionally and physically taxing.

Very true. I lost myself somewhere along the line, I was just a caregiver. It took me a couple of years to reinvent myself after my husband died.

 

[likitisplit]

glen campbell was an awesome musician, songwriter and guitarist who never got full recognition he deserved, but he's the only one i know of at least who wrote and sang his own swan song. he wrote and sang "I'm Not Gonna Miss You" before he died. it says it all. if you never heard it below is a link...you'll enjoy this.

 

[Lilianna23]

I got to spend the day with my husband and his treatment team. They’re changing his meds, and he’s officially been classified as Huntingtons disease stage 3.. or maybe it’s Stage 3 Huntingtons.

It’s breaking my heart watching him struggle.

I'm so very sorry, Scarlet. I know how hard it is for you both. I'm a nurse. Please feel free to reach out if there's anything I can help you with. Even a hug.

 

[aliencardigan]

Hey Scarlet, so sorry to hear of another family suffering through HD. My in-law family has multiple cases throughout and it's a heartbreaking devastating hereditary condition. Take care of yourself too while supporting your husband.

 

[STrent]

Very sad to read and wish you all the best, those of you struggling. I did this a couple of years ago with my wife, was GIST cancer and it was hell for both of us. Peace came, with heavy hearts.

 

[Wageslave]

I got to spend the day with my husband and his treatment team. They’re changing his meds, and he’s officially been classified as Huntingtons disease stage 3.. or maybe it’s Stage 3 Huntingtons.

It’s breaking my heart watching him struggle.

Sending best wishes to you . I cared for my mother when she had Alzheimers.
You are one of so many unsung heroes.
Take care

 

[NormalMarriedWhiteGuy]

Yep. Going through it right now with my wife and my mother. Friends are important and this (for me) recently discovered site is a great outlet and helps me cope because it gets my mind off things for a bit. Even an hour break helps.

 

[lit_ch3]

Wishing everyone the best here. It's a hard, hard road.

 

[LarryTee50]

Just beginning the marathon....a loved one dx with Parkinson's a little over a year ago.........

 

[LLCox]

I got to spend the day with my husband and his treatment team. They’re changing his meds, and he’s officially been classified as Huntingtons disease stage 3.. or maybe it’s Stage 3 Huntingtons.

It’s breaking my heart watching him struggle.

My wife will have passed away from Cancer and Alzheimer's two years ago in May. At least she was here at home with me. I miss her.

 

[Scareltt]

On a lighter note (it doesn’t have to be doom and gloom all the time)

Short story (promise)

My husband started grinding his teeth. So of course they had a ridiculously expensive mouth guard from his doctor, his dentist also had an option.

There was like a two or three week wait for the thing. I jokingly said. “Maybe a penis gage would work in the meantime.”

My husband took my suggestion literally and purchased a relatively good quality one with a “quick release” strap.

The first night was awful, a d after like 10 minutes he took it off.

The problem was the lack of air he couldn’t breathe with it in his mouth. So he drilled a hole through it.

Bingo!

No more grinding his teeth, and no more snoring! Because it holds his tongue in place… wow!

Please don’t take any of my ideas as good advice.. I sat up several nights because I was worried he might choke himself..

Consult a Doctor before trying it.

 

[CuriousRick]

On a lighter note (it doesn’t have to be doom and gloom all the time)

Short story (promise)

My husband started grinding his teeth. So of course they had a ridiculously expensive mouth guard from his doctor, his dentist also had an option.

There was like a two or three week wait for the thing. I jokingly said. “Maybe a penis gage would work in the meantime.”

My husband took my suggestion literally and purchased a relatively good quality one with a “quick release” strap.

The first night was awful, a d after like 10 minutes he took it off.

The problem was the lack of air he couldn’t breathe with it in his mouth. So he drilled a hole through it.

Bingo!

No more grinding his teeth, and no more snoring! Because it holds his tongue in place… wow!

Please don’t take any of my ideas as good advice.. I sat up several nights because I was worried he might choke himself..

Consult a Doctor before trying it.

That’s great you found a simple solution

 

[Wat_Tyler]

On a lighter note (it doesn’t have to be doom and gloom all the time)

Short story (promise)

My husband started grinding his teeth. So of course they had a ridiculously expensive mouth guard from his doctor, his dentist also had an option.

There was like a two or three week wait for the thing. I jokingly said. “Maybe a penis gage would work in the meantime.”

My husband took my suggestion literally and purchased a relatively good quality one with a “quick release” strap.

The first night was awful, a d after like 10 minutes he took it off.

The problem was the lack of air he couldn’t breathe with it in his mouth. So he drilled a hole through it.

Bingo!

No more grinding his teeth, and no more snoring! Because it holds his tongue in place… wow!

Please don’t take any of my ideas as good advice.. I sat up several nights because I was worried he might choke himself..

Consult a Doctor before trying it.

Congratulations for thinking out of the box and for having the guts to experiment. Sometimes (oftentimes, actually), simple is best. Effective, too.

 

[aliencardigan]

On a lighter note (it doesn’t have to be doom and gloom all the time)

Short story (promise)

My husband started grinding his teeth. So of course they had a ridiculously expensive mouth guard from his doctor, his dentist also had an option.

There was like a two or three week wait for the thing. I jokingly said. “Maybe a penis gage would work in the meantime.”

My husband took my suggestion literally and purchased a relatively good quality one with a “quick release” strap.

The first night was awful, a d after like 10 minutes he took it off.

The problem was the lack of air he couldn’t breathe with it in his mouth. So he drilled a hole through it.

Bingo!

No more grinding his teeth, and no more snoring! Because it holds his tongue in place… wow!

Please don’t take any of my ideas as good advice.. I sat up several nights because I was worried he might choke himself..

Consult a Doctor before trying it.

I got a chuckle out of this! So glad you can find some amusing things to bring a smile although I'm not sure anyone would actually ask their doctor first! We all need to smile at the lighter moments and make them memories. My BIL has come up with a few zingers to describe some of his challenges and movements.
Take care Scareltt

 

[Lovethefox]

On a lighter note (it doesn’t have to be doom and gloom all the time)

Short story (promise)

My husband started grinding his teeth. So of course they had a ridiculously expensive mouth guard from his doctor, his dentist also had an option.

There was like a two or three week wait for the thing. I jokingly said. “Maybe a penis gage would work in the meantime.”

My husband took my suggestion literally and purchased a relatively good quality one with a “quick release” strap.

The first night was awful, a d after like 10 minutes he took it off.

The problem was the lack of air he couldn’t breathe with it in his mouth. So he drilled a hole through it.

Bingo!

No more grinding his teeth, and no more snoring! Because it holds his tongue in place… wow!

Please don’t take any of my ideas as good advice.. I sat up several nights because I was worried he might choke himself..

Consult a Doctor before trying it.

On a lighter note (it doesn’t have to be doom and gloom all the time)

Short story (promise)

My husband started grinding his teeth. So of course they had a ridiculously expensive mouth guard from his doctor, his dentist also had an option.

There was like a two or three week wait for the thing. I jokingly said. “Maybe a penis gage would work in the meantime.”

My husband took my suggestion literally and purchased a relatively good quality one with a “quick release” strap.

The first night was awful, a d after like 10 minutes he took it off.

The problem was the lack of air he couldn’t breathe with it in his mouth. So he drilled a hole through it.

Bingo!

No more grinding his teeth, and no more snoring! Because it holds his tongue in place… wow!

Please don’t take any of my ideas as good advice.. I sat up several nights because I was worried he might choke himself..

Consult a Doctor before trying it.

That’s great you were able to find some humor in it.
I’m well aware that those sleepless nights can take their toll.
Hang in there Scarlett.

 

[sallysparrow23]

Hi Scareltt, I just read through your thread and I'm so sorry to hear about your husband and this situation that you're both going through. I'm not experiencing anything like this personally, but have been helping a friend who's father has early onset dementia. It's progressed rather quickly and there are a lot of mixed feelings about care and what comes next. He still wants to be so independent but has put himself into situations where he's almost caught the house on fire, wandered off etc. Dark humor is something their family and I identify with so getting a laugh at any point always helps even a little. I hope you're able to find time to take care of yourself as well.

 

[Scareltt]

Hi Scareltt, I just read through your thread and I'm so sorry to hear about your husband and this situation that you're both going through. I'm not experiencing anything like this personally, but have been helping a friend who's father has early onset dementia. It's progressed rather quickly and there are a lot of mixed feelings about care and what comes next. He still wants to be so independent but has put himself into situations where he's almost caught the house on fire, wandered off etc. Dark humor is something their family and I identify with so getting a laugh at any point always helps even a little. I hope you're able to find time to take care of yourself as well.

The gallows humor is something, I have a difficult time with..

Sadly I’ve been with 3 friends, 1 parent, and 4 grandparents final stages. Plus all of Matty’s family…

I remember fighting back tears as some of them planned their funerals.. it’s a selfless thing to say. “I don’t want this to be (whatever adjective) for my friends and family. Make sure everyone has good food, and booze..”

 

[lit_ch3]

That's a load to bear...8 plus the other side? Best wishes....