I’ve been caring for my husband for 5 years now. The last 6 months things are getting much worse. Some mild swallowing issues, speech very slurred. He was almost in a wheelchair as walking was really risky. Fell last Monday night and now has a partial fracture in his left leg.Hospital transferred him to a nursing home yesterday for “rehab”.
I don’t think I can handle him at home anymore.Im a retired RN and i do everything in my power to make his life better.My own health is being compromised.I stress eat have gained a lot of weight and now have high blood pressure.Somewhere in this journey I’ve lost my own life. He is essentially non ambulatory and weighs 260 pounds. I hate the thought of him in a home but I think it would be very unrealistic to care for him at home at this point.We have no family assist.
I’m overcome with guilt about placing him in a home. He is the sweetest man and I love him so much. But it seems like the best thing to do at this point. He is now on palliative care.....He is fortunate enough to have long term care insurance....After much deliberation I’ve realized that due to his size and lack of mobility that this is not realistic at home...
Why on earth do I feel like a failure???
Warm hugs to you all....
Betty
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Bettina545
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You are not alone in what you are facing and the struggle you are waging to care and to survive both physically and emotionally.
Simply put caring for a loved one at home knocks six bells out of one on every front.
I have been there on the failure / guilt thing. Many of us here have. "If only I was a better carer my loved one would still be enjoying our home." "There must be something wrong with me that I couldn't keep going." All of that and more!
The truth of the matter is that traditionally home care would have been spread out between a wider family. Now the pressure is really on for everyone with employment etc and even relatives who live close by often have little time to give both practically and emotionally. Carers are often isolated and trapped in what is quite often an unbearable task.
When we finally have to let go and let a nursing home step in we are often exhausted and emotionally frazzled and stressed seemingly to the point of no recovery. Any physical weaknesses naturally come to the fore at such times. Double whamy indeed!
The feelings of guilt are deeply programmed into us. For some more than others. That is the way we are. Without going into too much psychology all emotions have a functional role in preserving the viability and survival of primate groups. Guilt serves the function of making us do the best for our loved ones. It is deeply programmed in to our limbic system.
Please just recognise that and dump it. Yes, though programmed into us it is 'dumpable'.
You might try this:
Every time it surfaces just recognise it is there and that it is unwanted. Sit still for a moment taking slow steady breaths using your diaphragm. Breath in through your nose and out through your mouth. As you breath in feel the cool air in your nose, then throat and down into your lungs and as you breath out try to imagine exhaling the feelings of guilt. As you do this remember that you still provide care, but in a different way now. That you still love him and will be there for him. Feel free to alter the way you use this technique to make it work for you. For some just mentally affirming the italicised part above is enough.
Hi Kevin. Your advices warms my heart. My sister falls more than 3 times a day. I am now firmely trying to found a nurse home for her. She is in greaqt risk to have a bad fall and a bad seisure, pushing her care to a worsest condition. For sure guilt is always present, and we need to process these filings in order to be operative and found out a solution. The primitive filings of the horde mus be instrumental, operative, succesfull. If not. the paciente and the carer will died, who knows who will be the first to died?
SP evolution is always negative and we need this forum to help each other to carry such a weight. Thanks for your help
Dearest Betty, one thing you are NOT is a failure. You have looked after your husband for five years with this evil disease. It is not possible for one person, on their own to cope with PSP, especially now with a broken leg.
Of course you still love him, he is your husband. Perhaps now you can go back to being his wife. Anyone can do the practical side of life, but only you can do the most important job in the world, that's be his wife again and showing that you do love him.
My husband died 2 1/2 years ago, the only guilt left is, I wasn't a wife to him during his journey, just a carer, only for the last three precious days of his life, did I have this luxury, for that I will forever grateful. Please make the most of this time and not waste it with unnecessary guilt feelings.
Me too. I was a carer and couldn’t be the wife. I railed about that but in the end it worked out. But I’m still having a hard time.
You always have the best sage advice. Bless you.
Cuttercat
Oh, Betty, my heart goes out to you! I can tell you are not a failure... l think you are an Earth Angel. You are thinking of the best treatment for your husband and it is one of the hardest gut wrenching decisions. I felt like you with my son & then my mom, so l know first hand we are not failures & guilt doesn't help us or our loved ones. Get as much rest as you can & tackle this new stage of life with as much grace & love as you can. Sending hugs... Granni B
After 4+ years of doing it all myself I well understand your feeling. You do have the option of using a nursing home until you feel recovered enough to bring him home again. If you don’t think that is a possibility he is in the home already. Both of you can make the adjustment to the new normal.
I couldnt answer your post this morning i just sat here and sobbed. I think it was when I read
'Somewhere in this journey I have lost my own life'
That really hit home.
You have been given really good advice already Use this time to rest and recharge your batteries then see how you feel. It must be hard having no family around to help.
Someone in this community once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”. This thinking keeps me going. I’m not ready to make the move to a nursing home for Mike yet, but even though he wants to stay at home, that might be the way to provide the best care for him. I am torn too, but if we (the carers) don’t take care of ourselves first; how can we provide care for our loved one? Like on a plane, put your oxygen mask on first then help those around you. Good luck with your decision and try to not let the guilt take over.
Hi Betty, I've been looking after my hubby coming up on 5 years and like you I have felt that I've lost my life too. So you are not on your own. I hope you lose the guilt of your husband needing to be in a nursing home and that you get back to being you and a loving wife. Lots of love, Nanny857xx
Hi Betty, I am sooooooo sorry for all you are going through. I understand and relate to your statement, "My own health is being compromised...........Somewhere in this journey I have lost my own life".
I live in Los Angeles, CA, USA. My son was a Kaiser Permanente client. First thro his employment and then thro ACA (when he lost his health insurance). He was receiving DISABILITY from both CalStrs and Social Security.
My son died of PSP, May 4, 2017. He was barely 55 years old. He had never married. He had his own home 10 minutes away from mine. He did NOT have LTC insurance (I do). His wish was to remain at home and die at home. I was 77 years old when he died, and frankly I felt like you. The havoc to my health came later, AFTER his death, AFTER house was sold, AFTER his three favorite basses were sold, AFTER the memorial. Whether I was sleeping at my home or at his home, I never got a good night's sleep. At home I was worried about what possibly be happening at his home. At his home, I heard every tiny noise of his and/or the paid caretaker. The last 3-4 months of my son's life he had a 24 hour paid caretaker, 5 days a week. I came in on the weekends. During the week I would come by for a visit a couple of times a day. The caretaker was paid from my son's savings.
MY EXPERIENCE is that GUILT is part of the package....of PSP, of losing patience while caring for your loved one (a consequence of not understanding or accepting the erraticness/unpredicatability of PSP), and definitely of the GRIEVING PROCESS. I share that because you have already expressed disappointment with your "guilt".
What ever choices you make, or your husband makes, with it WILL come guilt. Now or later. Looking back we always feel we could have done better.....even if we humanly couldn't have.
Hindsight is NO sight, but here is mine for you to take or to leave. GIVE THANKS THAT HE HAS LTC because it presents options. 1) You can have care in the home, which brings its own disruptions, because you will be aware of all that is happening with him.....especially in the night ( a good night's sleep for you will be rare). 2) you can place him in a skilled nursing facility. This will allow you to get there as early as you like and stay until he is put to bed (sleep), BUT while there, you will be able to call for the help that he requires. Your job will be there to comfort him, to be his companion, to tell him how much you love him, and how grateful you are that he was YOUR husband.......not to do the physical care-taking. I would suggest that You can start with AT SKILLED FACILITY CARE, especially because he is in rehab recovering from a broken leg, you can extend it...for him to remain.
Please remember that If you have a heart attack or stroke or hurt your back or drop him while transferring, YOU and HE will both suffer the guilt, and possibly harm. In addition, making a decision (or change) under CRISIS is not as healthy as making the change before CRISIS.
Changing a decision is almost usually possible. If you keep him at home and it becomes difficult, you can place him in facility. If he is in a facility and you are racked with guilt, you can bring him home.
I find that CHANGE is always difficult. It takes awhile to get adjusted. He will need to adjust and so will you. So, that said, what ever you decide, give it 3 months so that you both have a chance to adjust to the CHANGE.
If he is in a facility there are several people to help him.....less possibility of losing patience, or not having enough hands for the task at hand.
I know whatever you decide will be the correct choice...even if later you experience guilt for not having taken the other choice.
Because all of us feel that way. I too feel that I have lost my life. To be honest I am not sure I care anymore. I don't know if this ever leaves you. Maybe eventually you get over it but after two and a half years since my husband died I feel just as awful now. Yes I tell myself what a failure I was so I have to work on it to get out of that destructive place. What you have done is the right thing for you both.
You aren't able to care for your lovely husband at home. Now he has broken his leg it would be even worse for you both. He is in the right place. Just become his wife again. Go and visit him and make sure he knows you love him. That is the greatest gift you can give him right now.
Take care of yourself and rest as you must be so tired?
My Darling I am in exactly the same position. YOU ARE NIT A FAILURE! You have done the best you can. I have had to put my husband into care after 5 years and the guilt is awful. No family close by to assist and pressure from them to move him interstate. People tell you that you have to get over the guilt but it is not easy. You need good friends to support you. He has been in care now for 7 weeks and believe me you will have days and nights when your heart breaks and you will cry yourself to sleep. It is like they have already died but they are still here. You miss the person that they were but sadly they are gone. My husband is still quite cognitive, but starting to get forgetful, which makes it very hard for him as well. He told me that it is like being jail but that is to make me feel guilty too. I try to see him everyday but I am told that I shouldn’t go every day as he still relies on me and not them. Also I have to start a new life for myself. It seems so selfish trying to enjoy yourself while he has had all his independence taken away. I know he is in good hands and is being well cared for. No one knows how long they have to live so it is up to us to make the best of it. My prayers are for you to be at peace with your decision. I am always ready to talk. ❤️❤️
Please do not think you are a failure, you are a star.
One of the best pieces of advice I was given following my husband's diagnosis was from our family GP. He had recognised the symptoms having cared for a previous PSP sufferer. He asked me what I did, and told me, no matter what was thrown at me in the coming years to keep on doing my things. To accept that I might not be able to look after my husband on my own and not to try to be superwoman.
I suspect our better halves are at similar stages, with the exception of the broken leg. Chris can barely speak, he can still stand to transfer from chair to wheelchair and is on a soft diet. We are blessed to have a team of wonderful carers who come in twice a day, but that still leaves 22.25 hours a day which can be unpredictable.
So my dear fellow carer, do not feel guilty, keep on keeping on and return to being a wife and relinquish the carer xx
Please don’t blame yourself for an outcome that keeps you both in the best care you can. You cannot help him if you are unable to keep well yourself.
Every meeting we’ve taken Dad to has inevitably included a conversation about how we are doing, because professionals know what the care toll is. They don’t think it’s sustainable despite our efforts, and it’s all about the level of care needed. What’s best for Dad isn’t what we think, it’s what he needs. I wish it were different.
You are not to blame for this insidious disease and the impact it has had on both your lives. The worst aspect is the constant difficult decisions we make that are almost as bad as the first getting the news.
Please treat yourself kindly at this difficult time. x
Do what's best for you. Your health matters too. We we're lucky Myself and my sister's husband did it together so my brother in law was still able to play golf. You take care x
I can only echo great words others have replied to you.
You are simply one human being and the needs of PSP exceed that of one person.
Your health will be compromised and then who will be there for him to chat, hold hands and make him feel loved. Carers can manage physical care but it is partners who are there to love and cherish.
Dear Betty. You are not a failure. You have been doing a wonderful job but there is a time when more help is needed. If he goes into a home you will have time to spend quality time with him as his wife and not as his carer and you can spend time together and do things like making up a memory scrapbook/photo album and maybe reading to him or taking him out in the wheelchair. Good things to do.
You’ve done the best thing you ever can in getting professional care for your man
We’ve been down this road with mum insisting on doing everything for a long as she could. Finally accepted by all of us that she’s not superwoman and at last she’s now able to simply be his wife again and it’s given her the chance to have some peaceful quality time with him in his final days.
The carers have taken of of our shoulders as a family the huge burden that this horrid disease creates
Accept the help and don’t ever ever feel guilty. It’s the toughest decision to make but once it’s made you will realise it’s the right one
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