hi, so my husband had sca in Jan 2017 resulting in severe hypoxia brain injury. He has no memory of his life and his short term memory is very very poor. He was in hospital /brain injury rehabilitation for 18 months before we brought him home. He needs 24 hour care which I provide with help of carers.
Last six months he has been showing signs of deterioration. He has a movement disorder, type 2 diabetes, and his mobility has recently declined, to the point where some days he cannot weight bear, which makes looking after him very difficult for me. His balance is bad so needs constant supervision.
I have been really suffering with my mental health over this. We have been married 44 years, I know he is not the same man I married now but I still love him dearly, I have been thinking of having him put into nursing home. My family feel it’s the right time and to give myself some kind of life.
Any advice would be welcome.
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lbuxton
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I can relate to your post. My husband had a severe haemorrhagic stroke in 2018 that left him with right sided paralysis and aphasia (very little speech, inability to spell and only able to read simple sentences). Despite all this his personality is unchanged. The inability to communicate is frustrating for both of us.
Recently his mobility became a lot worse. He was referred for neuro physio which got him back to the original level. We also saw a rehab consultant who said this decline was very common and almost to be expected she has increased his baclofen.
It really is hard on the carer as their life is so compromised also. Luckily once my husband is in bed for the night he doesn’t need me until the next morning. I would find it very difficult if it was 24 hour. Even so I think the underlying stress and frustration has had a negative affect on my own health. I understand how conflicted you feel about whether the time has come to find a nursing home. I wish you well.
Do not put him in a nursing home. I am a severe hypoxic injury survivor. I spent a year in a home. This home stole from me, over a grand in compact discs. It had bugs and hair in the food. I had another resident check the fire detectors out of curiosity. No batteries. I witnessed a person put into a full Nelson once. This individual also later confessed to me of sexual assault. I sent a letter to state officials of the problems. They were inspected and fined 5 Grand. I told the wrong person I had sent the letter, and recieved an eviction notice. My family who had power of attorney were not contacted. They lived 8 hours away, and I couldn’t make long distant phone calls. If I hadn’t of known of a local volunteer, I would have been made homeless. Although my injury was severe physically, my cognition was always fairly sharp. It is what got me into trouble, but then probably saved my life. The home was a north eàstern state near Canada. If I hadn’t of made friends in the one year, I had lived in the city, I probably would have ended up freezing to death. Which ironically is how I suffered my hypoxia in the first place.
Hi IbuxtonMy husband had a massive stroke following surgery for an aneurysm in 2020. Similarly to yourselves after hospital and rehabilitation, he came home. He had left side paralysis,little vision,poor short term memory, incontinent with no mobility at all. I was his carer with the help of carers coming in. He passed away in June this year. I loved him dearly, we had been together for 33 years but those last few years were very very hard. I can completely understand your feelings.i became very isolated with no life of my own and your relationship cant help but be affected.
I would say, a nursing home could give you some breathing space, a chance for some life for yourself and time to just spend it with your husband rather than exhausting yourself running around doing everything.
My husband is requiring more care over time. I am not at the juncture of having to make the decision facing you. I have thought ahead a bit and here are a few thoughts.
He will continue to need both emotional support as well as physical care for the foreseeable future. If the physical care requirement becomes overwhelming, then my ability to give emotional support will diminish.
I have no illusions that a nursing home setting can provide the same level of care that I give at home. Nevertheless, I suspect that there may come time when others will be able to provide the basic level of physical care in a way that will leave me both free and able to provide emotional connection/support AND also the level of care supervision needed AND the supplemental personalized care that institutions are not staffed to provide.
It may take time for you to find the right balance that meets both of your needs. Best wishes.
My husband had a traumatic brain injury last year and has been in hospital an rehab since, I have been told it is unlikely he will come home due to the severity of the injury he’s not been home since his accident,
I have been looking at new rehab / long term care for him if I can’t have him home I want the very best for him,
I have been looking around some care homes, my advice would be to just turn up don’t make an appointment, I have gone with my gut instinct when looking around them,
We have been together 20 years and married for 3 years he is my best friend my soulmate, but I have to do what is best for him, we also have a 9 year old son who keeps me going too.
Please think of your mental health, the care homes have a lot more carers and are trained to care for people,
I would get in touch with your local authority social services and as for a needs assessments,
I take my hat off to you!! A doing a very draining stressful job for the Man U love! Made harder because he’s not the Man U married? My husband divorced me for that very reason, times look very dire for you, just know- helps little- we all admire y for what y doing for him!! Only suggestion I have is to sit with a coffee, put y feet up and breathe deeply, SMILE to spite y frustration! Please come and share your progress, vent y frustrations?!!
Difficult decision to make. I am in the same situation as you. Husband at home not walking with a catheter and a RIG. 24 hour care provided by carers and myself. My mental health has suffered. It’s very hard but if you find the right nursing home it would be easier on you. I find that the few good days are worth all the bad days…..some of the time. You could join Carers first and see if the would help. It’s a charity especially for unpaid carers . All the nest
I wanted to bring my partner home after his severe SAH. I had plans drawn up and got planning permission to convert my house and started sourcing a live in carer. During this time he was in rehab then a temporary nursing home place for assessment and whilst I had the building work done. Gradually I realised the huge commitment and likely lack of support I would have and with awful guilt decided he would need to stay in the home,which fortunately is quite good. I visit him 4 times a week and am constantly advocating with medics for him to improve his condition and pain but he has deteriorated . The financial cost is horrific. CHC funding was refused. My life isn’t great, I’m either with him or on the phone or emailing or sorting his finances. I worry about him much of the time but he has 3 nurses on tap,all the time, very competent and caring staff ( not 100% but you have to accept that’s going to be so and pick your battles) I have a bit of a life. I’d have none if he was home. So it’s not all plain sailing but I’m sure it’s better than the alternative. There’s no easy options in this situation. Try and find a good home and take it from there. Wishing you huge luck and a big hug. X
My partner had a similar dilemma with his mum after she developed Dementia. He lives 70 miles away from her home but drove over regularly to spend three or four days with her.
Sadly, she became disorientated, wanting to 'Go home' and questioning the identity of he and his sister (who spent most days with her). As carers struggled to keep her safe and a care home was recommended by doctors & carers, a care home was eventually decided on, but with really heavy hearts.
It was a troubling few years trying to keep her at home, but she soon adopted fellow residents at the care home as 'family' and welcomed the visits from her own family (she thought they were 'Kind strangers') knowing she wouldn't be alone after they left. She passed away aged 98.
The care home option is always a gut wrenching one but, so long as it's a reputable and fit-for-purpose one, it's a choice which can keep loved ones safe and where family can visit frequently without the ongoing stress & exhaustion.
A guilt trip for you m'love for sure, but you have a duty to yourself and other family. And maybe your man needs you fit and well ; not as a frazzled carer, but loving wife & soulmate ?
I hope you'll find the best way forward dear lady. I feel for you...
I am so sorry to read about how difficult life must be for all you . Such a dramatic change for all of your lives and something that nobody will ever think would happen to them .. from experiences I have had though my life in person and with the work I used to do I totally understand the need for you to have some time not being your husband carer . Your love for him hasn’t gone and that’s is so nice to hear ,but with the help you will receive by being able to still live your life and still spend precious time with him . I so hope you get support from all who are close to you .. sue x
Have you had any input from health care providers about this? I understand your feelings. Is there a social worker or mental health provider that help? I wore myself out being a codependent- meeting other people's expectations. I am a retirednurse- was rn. I held my firsts husband's hand through his last breath. He was in a nursing home on hospice. My point here is I got bacterial meningitis of my brain. May 2014. Had access left temporal lobe. I almost died. I got my health back.
I know now I need to take care of me. After I put first husband in nursing home he died 6 weeks later. I am not telling you what to do. Just giving insight into what I experienced
Hi Ibuxton, it’s a difficult decision to make, but at the end of the day it’s got to be what’s best for your husband. Having worked in nursing and care homes prior to my stroke, there are good and bad ones , go on social services on line and look at the reports for inspections for your local homes, and then go visit, just turn up, try not to go at meal times, as most decent homes will protect their residents, to a settled nice meal without people wandering round looking at them,and the same at bedtime. Try mid afternoon, do they do any activities, are all residents included, are relatives welcome and included, hope all goes well,and you can become a wife instead of a carer. Take care love Alice xx
Hi,my husband acquired a hypoxic brain injury in Jan 2017 after a cardiac arrest.After spending time in a coma then nearly 6 months in rehab he came home,where I care for him,24/7.He has no memory of our life before,but still has his sense of humour.He can be left for a short period in the morning once I have him settled listening to music while I walk the dogs.This last year his mobility is not as good as it was.I worked in care homes until the day of his accident,both elderly and younger adult..I don't have carers in and manage on my own,but everyone is different.If I couldn't cope,then he would have to go into care..We have been married 26 years..He keeps telling me he doesn't want to go into a home.Its a hard decision,but if your husband needs more specialist care and its affecting your health,then that is a decision only you can make..I wish you luck..Hugs.
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