Looking for some advise. In August of this year, my 42 year old husband suffered 2 ruptured brain aneurysms, resulting in a stroke in the front left brain. After spending 31 days in a neurosurgical ICU, 30 days in an LTAC, he is currently in a skilled nursing facility. His recovery is slow, but consistent. He cannot walk, talk, etc… but he can move his extremities, chew and swallow (though he still has his PEG as his main source of nutrition), and is aware and responds appropriately to family, friends, and staff (smiles, laughs, smirks, etc). Therapy continues to work with his daily.
My issue - I’m having a hard time separating my role as care giver and my role as his spouse. I spend early mornings with him, go to my full time job, take my lunch to help with his therapy, then back to work until 5. Afterwards, I head back to the facility and stay until around 7 - when I go pickup our 10 year old daughter from her sitter and head home of dinner. This goes on 5 days a week, and we spend the weekends with his at the facility, I help out all I can, but I find myself getting frustrated and depressed. I miss our talks and time together as a couple and as a family. I know things will never be the same again, but will it get any easier? I wish I could go back to just being his spouse.
I’m so sorry that you and your family have been so affected by a brain aneurysm. Your husband is lucky indeed to have a spouse who is so devoted to his care and rehabilitation.
There are some wonderful people with very similar experiences to yours in this community. This is, though, a very busy time for many of them, so please be patient and give them a little time to reach out to you.
Meanwhile, all the best to you and your family as you try to make the best that you can of the holiday season. Please stay in touch over the holidays.
Hi Maryann1, I am so sorry what you are going through. My husband had a ruptured aneurysm in March 2015. It is a long road, a marathon, not a sprint, for sure. So pace yourself. I have learned I can’t be everything, and it sounds like you also have to be Mom to your child. My kids have grown and left home. Yes, it can get lonely when your spouse can not process thoughts and communicate like he used to. I am still split between wife and caregiver. My husband still does not drive so I use my day off from work to drive him to therapy. I watched a video, maybe it was on this website, about a young army wife, whose husband had a tbi from combat. She said that she has learned that as she waits for him, sometimes it is okay if he waits for her while she shops, works out etc. I found that helpful in that it gave me permission to take a little time for myself. You can’t give what you don’t have, so take care of you, that is okay. The other helpful advice I got was to take one day at a time. Watch the trees and ignore the forest. I get hope from looking back and seeing the progress my husband has made. Celebrate every improvement no matter how small. When there are multiple problems, there are multiple areas for healing to happen. If you want to be in touch more, ‘friend’ me and we can email. May you find peace and hope this holiday season.
Hi Maryann1. You have been in my thoughts and prayers over Christmas. I do hope there were moments of relief and respite for you yesterday. I have been mulling over your concern about the division between spouse and caregiver. My sister is a social worker who helps families in situations like ours. Her advice to me was that as a spouse, I should be my husband’s care manager/co-ordinator, not his caregiver and to resist efforts by the system to take on caregiving. This seems to me to be wise, because as spouse we also need to have the energy to confront the system on behalf of our loved one on occasion and advocate for them. This becomes all the more important when you eventually get home. In the hospital, I helped with my husband’s speech and OT homework, because he did not remember he had any if I didn’t remind him and he needed help. Once home, I decided that what I could do, was help my husband with his physio regime, since I was going to the Y four times a week on my own anyway. Taking my husband meant I didn’t have to pay a sitter for him and someone else to help him at home. The Y made up a program based on our physio’s recommdnations and we worked on recumbent bikes etc together. I did not have the patience for some of the speech therapy and OT exercises so I had the PSW’s take that on. I did what worked for me, and we each have to do what suits our situation. Work with your strengths, you have them, you have hung in for so long. It does get better.
Your husband had two SAHs and an ischemic stroke? He must have a great love for you and your daughter and awesome will power.
Judy is right, this takes time. I ruptured. My journey not so extensive - 26 days ICU, 2 days Neuro floor and was able to come home. Eventually I found my own therapists to help me as my neurosurgeon is nowhere near the county I live in.
I had to eventually tell my better half to do things away from me. It was stifling to be surrounded by all the worry and concern.
More importantly its not healthy for the person who has the responsibility for caring and the family. So tell your husband that you love him. Explain that you want x amount of days for yourself, x amount of days for your daughter, x amount of days for him. Work out a plan that is healthy for the family unit.
You are his spouse first. The convalescent hospital should be doing the caregiving. It always helps to be proactive, and visit lots so you can see what’s going on. They should have a SW and perhaps a chaplain that you can speak with to come up with a healthy family plan. Take two or three days for you and your daughter to do things together. If you don’t take care of yourself first, you will not be able to care for him when he comes home.
Also the folks at Bens Friends started a Facebook Caregiver sight. I don’t do Facebook, but my partner found it helpful. You may want to Google it. Also try the American Stroke/Heart Association for lots of ideas on caregiving at different phases and please don’t forget the BAF site which also has information for caregivers.
Things have been crazy. We are getting ready to bring him home this weekend. He still needs round the clock care but I think he will do better at home in a familiar environment. He’s still not speaking but he responds appropriately with laughter, smiles, eye rolls, etc. He can feed himself finger foods and we are using the peg for overnight feedings and meds.
As for me, I have my good days and bad days. I have a wonderful support system of friends and my family - but I still feel overwhelmed at times. I’m back to work full time and my daughter is getting ready to start softball soon so it’s pretty crazy most days. I know we will fall into our own routine soon, but for now I’m flying by the seat of my pants.