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Many of us are carers now and so this category is for carers to share their thoughts and experiences

TOPIC: Looking for others who are/were caregivers for spouses

Looking for others who are/were caregivers for spouses 6 months 2 weeks ago #3168122

  • jeffreybbb
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Maybe now is a good time to get back to trying to support others who are/were caregivers, in whatever way we can
The following user(s) said Well Said: JennieR62

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Looking for others who are/were caregivers for spouses 6 months 1 week ago #3173686

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I was my husband's 24/7 home carer for 15years before the health authorities decided he was no longer able to live in his own home with me plus sadly he was making me very ill, so it was with a heavy heart and much soul searching And crying, I agreed he needed much more specialist nursing care in a nursing home that I alone could not give.
It has been almost a year now that I made that decision, and the guilt is slowly easing but he is very well looked after in the home I have no complaint but it's still sad to see him just laying there with no quality of life and just tired all the time.
He has the two worst two mental health diseases - Parkinson's and dementia.
I found buzz to be a lifesaver for me and still do, it's a way of connecting to other people whether they be in the same situation as you or for other reasons they find themselves housebound and cut off from the outside world.
The following user(s) said Well Said: Bonnie12, Kay59

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We are all stars, and we deserve to twinkle

Looking for others who are/were caregivers for spouses 6 months 6 days ago #3175124

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jennilin wrote: Your goals are admirable well done and working for free in your desire to help is amazing thank goodness for people like you ... I can see why you would be unsure of the point I am trying to make because I am a mere mortal and like lots of others struggle with the system .. I'm so glad you don't struggle... obviously it's my fault I am inept x


Read the last few posts and was stunned to see someone describe themselves as "inept". Whilst there are plenty of suggestions on how carers can fight the system there is no easy/straightforward solution as no 2 situations are identical. Social services appear to have been supplied with a "one size fits all" set of guidelines and until there's more flexibility in the system we will all continue to struggle.

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Looking for others who are/were caregivers for spouses 4 months 3 weeks ago #3203127

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I have just entered a phase where I am a caregiver for my wife. For the last two months, I did everthing around the house but dress and undress and bathe her. She became severly ill three weeks ago and I thought she would make her transition but she didn't. She is now in a nursing home/rehab center. I don't know how much she will improve but she is definitely improving.

One of my frustrations is how to deal with putting my/our dreams of moving out west on hold. They had already been postponed when she started a new chemotherapy regimen several months ago.

One of my key learnings is to write a very specific advanced care directive. I really don't want to live in a bed, if that was to be the expected outcome of any treatment for me, then I would ask to be let go of this body. I don't want to have to live a life where I would deprive someone of their dreams and goals to care for me.
The following user(s) said Well Said: Bonnie12

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Blessings,
Harry

Looking for others who are/were caregivers for spouses 4 months 3 weeks ago #3203184

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hcf3sf
You need to speak to a solicitor/Lawyer stating your requirement.

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Looking for others who are/were caregivers for spouses 4 months 3 weeks ago #3203471

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Thank you.

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Blessings,
Harry

Looking for others who are/were caregivers for spouses 3 months 3 weeks ago #3222684

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I was a caregiver for my husband for the last 9 years of his life. He suffered from M.S. also, but that was not what did him in. He was wheelchair bound when I met him, and fell in love with him, and married him. But it was a broken leg and lack of doctors willing to do what needed to be done that cause him to suffer infections for 9 years, in and out of hospital from sepsis.
PLEASE don't let anyone tell you that your loved one has NO QUALITY OF LIFE. I learned so many told me that and I resented it so much I demanded they were not allowed around my husband. HE is the only one to decide his quality of life. I too would give everything to have him back, me taking care of him 24/7, even just one more day. He I know would gladly suffer the pain to see his son go to College, get married, see his grandkids grow up - even if it's from a hospital bed. To know he was in the next room is so much better than staring in the dark at night, not able to sleep, or crying during the day because he's not here with me.

Sorry, didn't mean to go on. But I do know the pain, and JOY of caring for a loved one.

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Looking for others who are/were caregivers for spouses 3 months 3 weeks ago #3223961

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Kay59 wrote: I was a caregiver for my husband for the last 9 years of his life. He suffered from M.S. also, but that was not what did him in. He was wheelchair bound when I met him, and fell in love with him, and married him. But it was a broken leg and lack of doctors willing to do what needed to be done that cause him to suffer infections for 9 years, in and out of hospital from sepsis.
PLEASE don't let anyone tell you that your loved one has NO QUALITY OF LIFE. I learned so many told me that and I resented it so much I demanded they were not allowed around my husband. HE is the only one to decide his quality of life. I too would give everything to have him back, me taking care of him 24/7, even just one more day. He I know would gladly suffer the pain to see his son go to College, get married, see his grandkids grow up - even if it's from a hospital bed. To know he was in the next room is so much better than staring in the dark at night, not able to sleep, or crying during the day because he's not here with me.

Sorry, didn't mean to go on. But I do know the pain, and JOY of caring for a loved one.










Kay,
No apology necessary, you are more than welcome to open up and talk,if it helps you,
Really sorry for your loss.

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No home is complete without the pitter patter of kitty feet.

Looking for others who are/were caregivers for spouses 3 months 3 weeks ago #3224389

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"JOY of caring for a loved one."

I get a lot of joy caring about people, especially those in need. I don't get any joy in caring at home though because I never feel appreciated. I think if they truly are a "loved one" there must be a lot of joy caring for them though because of the love that would be felt mutually.
The following user(s) said Well Said: Bonnie12

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Looking for others who are/were caregivers for spouses 3 months 3 weeks ago #3224462

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My husband and I discussed his wishes years ago, but when the time came, he changed his mind and the things he did not want, he wanted. If it only gave him more time to see our son graduate high school. Doctors for the last 2 years of his life would always tell me he had "no quality of life" and I would get furious. Who were they to decide his quality of life? He may have been bed ridden, but he was able to enjoy visits from our grandchildren, watch our son grow up, and attend his graduation. One nurse had the nerve to tell me I needed to let him go, her brother was in a paralyzed state, and could only move his eyes, so they pulled the plug on him. That bothered me greatly, as well as my husband. He had his sense about him. He was in a wheelchair when I met and married him. Quality of life is not necessarily what they can do, but what they can enjoy. I believe to this day my husband would have preferred to still be alive and around me and our children an grandchildren, and I would gladly continue to take care of him 24/7 - it's much better than the pain I am going thru today. Which I was able to use on my mother who felt she was a burden on everyone, so she told the dr to let her die if her heart stopped - infuriating my dad who wanted them to do whatever to keep her alive. After I explained to her a loved one is not a burden to take care of (she knows all I did for my husband), and how much I miss him, so she told the dr the next day, at least try to revive her, but don't go to extreme. I had to learn the hard way that DNR means that if you are choking, they let you choke to death, if you are having a heart attack, they let you die from it - DNR means don't bother going to the hospital cause they wont do anything. Full code means they at least try to revive you, and if you are put on machines to keep you breathing or whatever, then you or your family can decide when to stop that. My husband was conscious and although earlier conversation he did not want a breathing machine or feeding tube, he was in his right mind that I let him make that decision. I got stuck with making the hardest one of when to stop them after the hospital gave him and incurable infection. So please be careful what you decide to do. Just as suicide hurts the ones left behind, so does a living directive. I used to work in a nursing home also, and knew I would not put my husband in one. I did wound care, breathing treatments, oxygen settings, IV's, feeding tubes, catheters..... I did everything for him. One time I had to call an ambulance out and I was giving them all the information about his ventilator and trach, and one of the paramedics looked at me and asked if I was a nurse, cause I was saying things she didn't know. I loved my husband, so I made it my job to learn all I needed to make him comfortable and take care of him. And I'd gladly give up all I own today just for another 2 hours with him. OK, sorry to have ranted on.

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