Last post Sat, Jul 19 2008 10:51 AM by Norma Carroll. 5 replies.
My husband had a severe ischemic stroke just short of his 50th birthday last June. It's been a very slow recovery, but we continue to see improvement every day, 9 months after the fact. It's a little, no, very sad, that friends who were there in the beginning started to wane away from us. This is not a contagious disease and it hurts me to have these so-called friends just abandon us the way they have. I know everyone has got their own thing to do, but a phone call once a week or a visit once a month would make a lot of difference. I feel alone. My family, with the exception of my son, doesn't offer any support or even visit unless it's a holiday (which I am expected to prepare dinner for!)
His recovery has been accomplished through therapy, which has now ended, and the home care I have provided. Did I mention that this is done while I work a full-time job? I'm not looking for sympathy. I'm not doing this for any other reason but that I love him and I know he would do it for me. I'm just curious if anyone else out there is experiencing the same behavior from others. I would really like your input.
DebZ
It's so hard to understand why this happens I have 2 children my husband has progressive MS no one comes to visit or even tries to help my children In anyway I thought I could handle this by myself but i'm loseing myself, along with my sanity and I am so mad at everyone and everything, we had so many plans to make life better for our children, I'm can't even have a normal conversation with my husband/bf because this disease has taken him away from me, it's like nobody understands I feel like my husband is gone and all that's left is a shell of what he used to be.nobody visit's anymore not even the members of his church!
I read both posts and I'm where both of you are. My husband was born with CP. Three years ago, from his spinal cord being pinched in his neck area, he ended up in a wheelchair. We have an eleven year old son. All kinds of people were there in the beginning of this process. They have sinced faded away. Part of it may be my fault, I have the worst time asking people for help. When people did ask how they could help, a response didn't come very easy. There is a home health care agency that comes in and helps with his daily cares. I work fulltime on second shift. People will tell me I need to take time for myself. In my mind I'm thinking, how can I, I feel so responsible for both my husband and my son. I don't always think I do enough for both of them. How can I take time for myself. Okay, I'm rambling. I tend to do that. I would say people are right there in the beginning, but they gradually pull away. It's not as easy to communicate with my husband as it once was. His speech is affected by the CP and now with his weaker muscles, it's diffucult for him to get his words out. A one-on-one conversation is next to impossible. I have to be there to interpret what he's saying. I get lost in caring for them.
You all are my strength, I too care for my husband, although I have his mind for conversation his body is having trouble catching up. New to a leg amputation and already in the wheelchair for 5 mos we are close to him getting his leg. We do not have children and this may sound bad but right now I am thankful we don't, we made the decision 11 years ago not to. After I was in a MVA with 5 herniated discs and told I could not carry them and after having a miscarriage while on birth control we figured it was not in the cards for us. We have 17 niece and nephews so if we get the need for kids we just spend time with them. What I identify with the most in your posts is that family friends and other don't come around. I just don't understand it. What is so hard to call up your brother and say how are you do you need anything or ask me if there is anything they can do. I will never understand it, in fact we moved away from his family and to the same town as mine as they are very supportive. Working through my mother understanding pain and what his limitations are, but we are working on it.
What I find the hardest is before we moved and if I needed to go to the store, what do I do if he needs something while I am gone. What if he needs the bathroom or their is an emergency in the house. I at least don't have that worry now. But do know it was a very real feeling, it is very hard but you have to take time for yourself. It is much harder with children but maybe if you can sit with family or church and explain the situation there may be help.
One thing to keep in mind as being the caregiver and I speak for myself here is I can get a god complex that no one else can take care of him like I can. You have to give up the control which can be scary but it is OK to have someone watch or sit with your spouse.
I find a coloring book and new crayons is a great way to be with my spouse but be able to go to another place and relax.
Jennifer
Deb,
As you have found out, and possibly already knew/suspected, you are far from being alone. I am the disabled one and from my perspective, I cherish any visitor as a true miracle. The thing, of course, that you want to avoid is putting a "guilt trip" on anybody. Now when you put all of this in a tumbler, shake it up and let it come out again; you'll have completely different scenarios, questions and answers. Yes, it is hard to gauge what will happen in any scenario but I would venture to say that regardless of the situation the top two reasons that the visitors are few:
a) We live in a very busy world where folks hardly have time for anything. (catch 22)
b) Friends, on a subsequent visit, do not know what to say because they remember how awkward/uneasy the first visit was and they'd rather not get into that situation again.
Now, the best thing to do is to help educate your/his friends. First, invite them over rather that waiting for them to invite themselves. During the visit, go above and beyond anything that you can do to eliminate any uneasiness on your visitor. Anytime you are exposed to something you've never done before you are going to be anxious/nervous. So will be the second and third times as well for the visitor. But over time, that hesitation slowly wears away. But remember, you have to be the teacher and don't expect miracles on the first go-around. Eventually, the true friends will be weeded out from others and they will surprise you and start coming to visit more often.
Been there, done that, many times. LOL
My best to you all,
Dave
