I have a similar problem in the fact my family (wife and 2 kids) don't understand why I have changed so much well not so much but I have trouble in concentrating when they are talking to me. If its something I'm not interested in I tell them as such and it likes the conversation and hurts them. I used to take great interest in conversation but at the moment I'm not. Im sure it will pass but I do need to educate them in whats happening to me even if it isn't life threatening or really serious but it needs to be addressed. You DO need to make time for yourself though and remember don't feel sorry for writing what you have as its better out on here then people can help. N
Hi, no you are not being selfish. This is an incredibly difficult time for the spouses, family and friends when the person you know has survived but is nothing like the person you knew before.
My hubby has a sub arachnoid haemorrhage 3 years ago and it was months before he recognised me and only now are we somewhere approximating where we were before.
At one point my husband called me by my mothers name, he sort of knew the face but could place the name, or our relationship, I don't think I had cried so much as I had that night. I nearly lost him days before and was very confused at my relief that he was alive and my upset that he didn't know who I was.
I researched his injury every night back in the hotel, I sent for leaflets and books, mainly from the Headway web site. I had a couple of amazing friends who were so supportive by phone and one who dropped everything to join me for 24 hours.
Eventually I realised that John communicated wi me by look, and the fact that if he was aggressive he calmed down when I walked in, even though he could tell me who I was he knew somehow that I was significant to him.
I carried on with the routine of comments, hugs and kisses but supplemented it with a small photo album with photos of the family with names written below. We discovered he could read but couldn't make too much sense of the words initially, but the book meant he could keep looking at it. I included a couple of photos of great times we had had together, anything that might jog his memory.
Can I suggest that you need a couple of days for you, or just a few hours. Take a walk, a long bath, something that is done just for you. Write your feelings down, the notebook I kept John has read since and says it fills in the blanks for him. Accept that family and friends can be great in the first few days, but as time rolls on they go back to their own lives and you are left on your own.
Contact Headway, they are so supportive, helpful and amazing. Also contact your local carers centre. You are now what is considered to be an unpaid family carer and can get support just for you. Try the Carers Trust web site or do a Google search then give them a ring. It's ok to scream, cry and dispair, the one thing no one tells you is that it will be a seriously long journey, but little things improve every step of the way. Some are so tiny you don't notice them until weeks later.
Hang in there, sorry that this is so long but I really felt for you this morning, and I have been exactly where you are at the moment. Hugs xxx
Hi Debbie I wrote a long reply to you but it has disappeared into the ether, this happened with a reply I wrote yesterday and I haven't the wherewithal to write it again.
Suffice it to say, you are not being selfish, you have to protect yourself on this journey too.
I am the one with the BI and I am 3 years into recovery, at times in the beginning, I knew I was being selfish and expecting a lot from my loved ones, but I had to do it to help my recovery, luckily I have come back, mostly like me, but I am still aware of the changes that we make to our life as a couple.
Write yourself a daily diary, and get all your feelings out on there too, believe me they help.
I feel I am still being selfish because if I need to go to bed or can't function one day then we have to accommodate it I can't just get on with things.
It is life changing, but good outcomes can happen, you just have to hang on in there, just remember we are here as is Headway.
That was the gist of it, let's hope this doesn't disappear now.
no you are most certainly not selifsh! when hubby first came home from hospitail i had no idea who had come home,it wasnot my hubby! i was frightned and worried.he looked blank and was prone to mood swings,but now i have my man back,we still have bad days but i know its him and not someone else! if you havenot done so contact headway and get in touch with support local to you they have really really helped us! i do hope you get youre man back soon,blessed be x
Bless you, Debbie. You are exhausted, and missing your Mark, love, that is all, and that is to be expected after what you have both been through.
As others have said, get as much information and support as you can. Keep talking to the other spouses on here who can empathise with your situation to the full and give you advice based on experience.
And forget being selfish after all your selfless love and compassion, and instead get yourself off to the nearest health spa for a day, or if that feels too big a leap, to your hairdresser and then a nail bar for a morning. Time to treat yourself, because Mark would understand that you need some 'me'time in order to continue to fight for him and give you both the best chance of having your best future together.
Every hug you give him, even if not yet reciprocated, is another brick in the foundation for your future together. And one day he will reach out and lay a brick next to yours, you know he will. It is just that he doesn't have the strength to help you do this yet.
And you say you are praying for Mark...may just be a figure of speech, but if not, please pray for yourself too. It isn't selfish, it is expected. In fact it is ok to be banging on the door in the middle of the night asking for help when help is needed.
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