caring for my husband

[Hay2210]

my husband suffered a traumatic brain injury a year ago , he was in hospital for a year he had a craniotomy because of a bleed he was starting to talk and eat food himself after 6 months, but then he went to have a titanium plate fitted and he had a blood clot and then the site got infected so they had to remove the plate , after that he is bedridden, peg fed he sleeps most of the time and doesn’t talk or show his emotions I am now caring for him and I just felt I needed some advice from anyone in a similar situation.

[TaIaV]

Hay, I do not have experience with this. I care for my husband, who still has many capabilities. I will simply offer you my admiration and encouragement. I do hope you find a set of people who have similar situations. It makes such a difference to communicate with people who fully understand your situation.

I am sure that the daily routine is onerous. It must be very hard to maintain a fresh outlook and the patience needed. I will say that as our loved ones lose capabilities, I find it more and more important to pay attention to the tone, intent, emotional content of what we say to that person. It is always the main thing that people of all capabilities remember about a communication: In a caregiving relationship it is even more important. A jovial, loving, optimistic or otherwise positive tone makes both us, the givers, and them, the recipients of the communication and care, feel better.

Wishing you strength and support.

[Hay2210 in reply to TaIaV]

thanks for replying and your kind words.

[pozza40]

Hi hay, I am in a very similar situation to you. My husband suffered a bleed following an operation for an aneurysm.this was in 2020. He had a craniotomy too, his plate also became infected and had to be removed.My husband has been home for 2 years now. He is hemiplegic,so has no use of his left arm and leg,he can talk but it's much slower and he is often confused about things. He acts, I would describe it as someone suffering from dementia. He sleeps a massive amount,like 18-20 hours a day. He is pretty much bedridden and incontinent too.

I'm not sure what advice I can offer, but I'm here if I can help.

[Hay2210 in reply to pozza40]

Thanks so much for replying it seems a very lonely place when you’re caring I love my husband but it’s as if I’m grieving for the person he was. He is incontinent too and has lost the use of his right arm and leg .

[pozza40 in reply to Hay2210]

I completely understand, it is a lonely place. Its very hard to explain to other people how it feels to be caring for someone who looks like your husband but who just doesn't seem to be in there anymore. Unfortunately I feel like I am becoming detached from him, I think it's like self preservation. I do agree,I think I'm still grieving for the man he was.I know it's heartbreaking what our husbands are going through but you do need to think and take care of yourself too. I know how hard this is, last summer I contacted adult social care to ask for a break.they arranged for my husband to go into a care home for 2 weeks, I felt so awful,really guilty.i almost said forget it. But we have a teenage daughter and I'd promised her a holiday so we went and it wasn't until after that I realised how much I'd needed it.

So I guess what I'm trying to say is, don't feel bad about doing something for yourself because this is probably the hardest thing we are ever going to go through x

[Hay2210 in reply to pozza40]

I can resonate with everything you have said I have lost my best friend and soul mate but he is still here laying in a hospital bed in the living room, I thought my life couldn’t get any worse as in 2005 we lost our 16 year old son to sudden adult death syndrome he collapsed playing football, now I don’t even know if he remembers him it’s a cruel thing any type of brain injury x

[guitarlady]

Hi, I am a carer for my friend who has a TBI from 4 yrs ago now. He's not in the same situation as your husband but I thought I'd tell you about a few routes to help I found which may be of help for you.

I contacted our local social services adult care who came and did a assessment with my friend.

Also I applied for Attendance allowance and Carers allowance online via the gov.uk link. I got this but the attendance allowance isn't paid until the person has the condition for 6 months so the earlier you apply the better. We still have this now.

Also there is the Headway support team too who might be able to provide information on any help which is available for you both.

I found the people on this site to be great when I've been pulling my hair out and feeling very stressed with helping my friend as I'm on my own too.

Still having difficult times now. My friend had a recent brain scan and the results showed scar tissue over the areas which control moods and personality which may account for the times he snaps at me and upsets me.

We have a letter saying he's got a appt soon with the neurologist at our hospital but at the moment he's in hospital with a bad knee he can't walk on.

I hope you might find some of this of help and stay on this site.

Take care, Brenda

[Hay2210 in reply to guitarlady]

thank you for your help I really appreciate you replying.

[Snowcloud]

There is a group on Facebook called Brain Injury Carers Support where you should be able to connect with others in the same situation.

[Hay2210 in reply to Snowcloud]

thanks I will have a look at that .

[Jessie1963]

My husband suffered serious brain injury due to the covid jab the doctor said he would not survive, it was two years today,he was my carer but I am his know,I feel very lonely all the time,he is like a different person,it is very hard,so perhaps we could help each other ,although he can do most thinks he needs supervision all the time his short term and long term memory was badly effected,he has know memory off what I was like or the children were like growing up

[Hay2210 in reply to Jessie1963]

I am sorry it’s hard to cope with everything that comes with brain injury the person is there physically but you don’t really know how much they know mentally and it gets frustrating sometimes because where as you used to discuss things together and do things together your just left doing it all on your own and your life changes as well , thanks for getting in touch