I was so saddened by your posting. How are you coping? What you have gone through this year has just got to be one of the most heartbreaking of times for you and your dear husband. Please know that our thoughts and prayers are with you...
I have never dealt with a serious disability as you are now. I care for my nearly ninety year-old father who has gone through some difficult times in the past five plus years. He was a victim of a home invasion situation in 2001 when I came to care for him. Then he had a mini-stroke and there we found he had cancer. He has a degenerated knee and now cannot walk much at all. I am looking into getting him a wheelchair this next week.
But, that has all been gradual compared to what you have gone through just this year... I can hardly express the heartache that I feel for you. I hope we can support you here... Just know that this is a safe place to share what you are going through and know that we are here for you...
How awful for you both. To be going along with your life one minute and the next.... your entire world changes and you don't know where you are. My husband had a stroke 2/27/06 and has lost use of his right side so maybe I understand a little (half as much?) of what you're trying to deal with. What are your ages? Do you have children at home? Family close? What resources do you have available as far as financial and medical assistance, etc? All those things that eat up your time and energy. What activities did your husband do before the accident? What were his feeling right after the accident? And now? You must spend a good deal of your time in a panic, wondering HOW you're going to make it through this and,at times, IF you're going to make it through this. Personally, I have given up on my husband, on myself and on the rest of the world more than once since February. But somehow, you just keep on going on. My salvation has been this site which has been the only place I could say how I really feel at any given moment without fear of criticism. I continually go back and re-read old posting just to remind me of all the help that's out there when I feel like I'm all alone in this.
Thanks for your encouraging words. We have four children and the youngest one moved out last June. We are empty nesters. We have excellent accident and disability coverage and cannot complain where finances are concerned. The insurance also provides for homecare services for Gilbert 7 days a week. What is hardest is getting up for him several times a night. Sometimes I feel so tired and that saps away at my courage. My husband is having a very difficult time adjusting to his new situation. He has panic attacks and a lot of bouts of depression. That means that I have to be strong for the both of us. I'm all out of sympathetic feelings for him. I try to remember that hard times will pass, that they are never permanent. I'm tired of being on bat all the time. I'm ultimately responsible for everything. It's a lot of pressure for one person. The children live too far away to be coming over on week nights.
Today is my birthday. I'm 47 and my husband is 49. This kids will be coming on the weekend and I told them I want to be off duty for the whole day. They will stay with their father.
Happy Birthday! Try to take a moment today to do something nice for yourself. Even if you just order in chinese food for dinner or a pizza, do something for yourself. Take a break from the daily chores and fix yourself a cup of hot chocolate. Celebrate in some small way - this is your day!
Hang in there and remember to breathe... You are under a lot of pressure and that is not good for you! Many here understand how that can be carrying the whole load every day. It is wearing... I am so glad to hear that you are getting a break this weekend! Meanwhile, take some time out for yourself today and know that we are here for you Birthday Girl!
I don't know what the homecare that you have is about....but....is it possible to switch the people from day care to night care a couple of times a week? That way you could have two days a week where you would have an entire day and night of relief? I do so know what you're saying about getting up in the night all the time. It takes everything out of you and still the daylight comes and you have to be the day nurse too. I only had to deal with that for about 6 weeks and then Dick could get up by himself. I realize those are not possibilities for you but you know you can't keep this up and remain healthy. See what you can find out about someone for the nights on a semi-regular basis. Yes, we are resposible for everything now, no husband to handle their share. No husband to even really discuss it with or lean on. I don't always cope. I've found that I let more and more things fall by the wayside and pretty much have narrowed it down to what is absolutely necessary to keep Dick functioning and what I need to keep me going. So many adjustments. And no time to prepare for them. Just, BOOM, in one second of one day the whole world you knew is gone. I spent many months trying to make that old world come back and hoping for a miracle. That was fruitless. Now I'm just trying to find another world I can survive in. Are your kids willing to pitch in 100%? I mean, will they let you go away for the weekend and take complete responsibility for their father? Maybe you could go to their place and them stay at yours? You cannot do it all yourself, no one can. You just have to admit it, accept it and learn what you can do and still retain your sanity. The people here will help and , believe me, it's a wonderful place to come and dump all your fears and frustrations.
HAU'OLI LA HANAU !!!!!!! (Happy Birthday in Hawaiian)
Birthdays and other holidays are hard I know (our 40th wedding anniversary was 10/2). Remembering past ones is sad because you know they'll never be the same again and the husband you used to celebrate with is not even the same man anymore. Caregiving is the hardest job I've even had. No raises, no pat's on the back for a job well done, no compliments, no vacations. You have to pat yourself on the back and know that you're doing the best you can. Don't expect too much from yourself. You have to remain strong and have the courage to do what is necessary for you to function. If you can get help, use it ! If you can't, then you have to learn to let more things go. I can't really imagine what you're dealing with as my husband is able to do a lot for himself and I'm still struggling. Your situation is truly beyond my comprehension. You're on a long and lonely journey girl......hang on as best you can. Judi
I am married to a C3-C4 quad; also paralyzed in an auto accident. It has been 4 years now and you are correct, the caregiving job is very exhausting with a quad. My husband has no arm function at all, so he is 100% dependant for everything. We have 2 children ages 10 and 12, so they also keep me very busy. It is like single parenting but with the added responsibility of caring for a quad. I too have some homecare but not 7 days a week. I mostly have the homecare when I go to my other job, but I always tell people that my real work is at home. I have a part-time job mostly for a break from caregiving. I found I just couldn't stay here 24/7. Gradually over the years the physical aspects of caring for a quad day and night have taken a toll. I decided that I need help at least one night a week. I have a nurse that comes one night a week and stays overnight and cares for my husband. On those nights, I go upstairs to our old bedroom and attempt to sleep undisturbed. I get very tired and frustrated too. The job of caring for a quad is just never ending. I sent you an e-mail a few days ago. Please feel free to e-mail anytime. I totally understand what you are going through. Happy Birthday. My birthday is in a few days too, but I try not to think about it. There are no breaks or special days for me. I have too many responsibilities, and there is no time to take a moment off. Thinking about you and wishing you strength.
Welcome to the boards! Your caring support is invaluable. The load you and Aline carry is so heavy... You are both really the super-heroes of caregiving.
It must be so hard to care for a spouse that is still so really young. It is a different emotional situation caring for an elderly loved one. Such as, in my case, a father who is nearly ninety... It doesn't make it any easier, but somehow it makes more sense that our days are numbered... It could be a month or it could be another year or ten.
It is never easy at any rate... Isn't it funny how a part-time job can seem like a break? Most people wouldn't understand that a job could be almost a vacation some days... I go to school and find that it has saved my sanity on many occasions. It is good to have a life outside the caregiving role.
Trish, it sounds like you have it pretty much together now. I think we can all learn a lot from you. Aline, hang in there dear heart. Life has a plan which we never seem to make sense of. My thoughts and prayers are with you both...
Welcome. I'm so glad to hear you're communicating with Aline. You have been through so much that she is facing that you can help her and know what she's dealing with. Bless you for that. I can't imagine the millions of difficulties you face every day. You must be a very strong person and have an enormous amount of courage, dealing with two little ones on top of everything else. You are truly an amazing woman.
Thank you for all your kinds words and thank you Trish for your email. I will check out the web site you mentioned.
I get homecare for Gilbert 7 days a week : 7am to 12:30, the from 2pm to 5 pm and from 10pm to 11pm. I work three days a week, Monday, Wednesday and Friday. The night before I work someone stays the night and attends to my husband. I go into my mental health room and sleep the whole night! What a joy! Now I appreciate all the little things that I didn't take notice of before.
One of the homecare workers gave me a birthday card that was very touching. This is what was written in it: "In reaching out to help others we heal ourselves, in giving happiness we receive our peace, in rising above our sorrows we find our joy"
How touching and encouraging. She also gave me two passes for the local pool.
I'm finding out that I have to let go mentally and emotionally and not try to fix everything. I have to take things as they come and relax.
My husband is struggling a lot with depression and cries a lot. I am tired of consoling him.
The children will be coming over for Thanksgiving, I hope he won't bring everybody down. We'll see.
I can so understand how you are feeling. I will say that things have gotten better for us over the last couple of years. The first 2 years were just horrible. My husband too is very depressed which I certainly understand, but after letting him wallow in his sorrow for a long while I sort of took the tough love approach. He expects me to do what before it took both of us to do in running our house and parenting our kids but with the additional responsibility of caring for him. He expects nothing of himself. I told him that yes I am so sorry for his injury but that it did not relieve him of his responsibility as a father or husband. I outlined certain things around here that I expect him to take care of. I know that he can not physically do these things, but I expected for him to arrange for them to be done and take responsibility. He is now in charge of all the weekly shopping. He is in charge of paying all the bills; he is in charge of getting the house cleaned, and helping the kids with homework. I gave him 2 months to figure out how to get this stuff done. He figured it out and has been doing it for the last 2 years now. He goes shopping with his nurses weekly while I work. He has a computer set up where he does all the bills and finances online and he works with a cleaning service to get our house cleaned every other week. I think that the more he can step outside himself and feel useful the better he feels about himself and the less depressed he is.
I remember the first year he was home; he didn�t even acknowledge my birthday; no happy birthday, no card, no gift, nothing. It made me so sad. He expects me to keep him up and console him, but he never thought of me or my feelings in all of this. I have lost a lot too with his injury. Things are beginning to change. He goes out with a nurse and gets me present, card, cake whatever, or orders flowers online, but now at least he acknowledges my day. I think it takes at least a couple of years to start back into some sort of new life. We are still working at it over here. You are doing a great job, and I pray that over time Gilbert will start to live again. Hang in there.
Thanks Trish, It's very helpful to get an idea of the time frame for recovery. I'll have to figure out how to get Gilbert more involved in homelife. A cognitive behavioral psychologist is coming to our home once a week (we live in a rural area and do not have transportation yet)to help him cope with his anxiety and depression. Gil was very anal and a perfectionist before and these traits make it so much harder for him to adapt.
In terms of the computer, I have ordered some voice recognition software called Dragon Naturally Speaking. I don't have it yet but am looking for to Gil using it.
I am very happy for the support I am getting from this forum.
Hi everyone, Just popping in to give everyone an update. We are still plugging along and my husband has been readmitted to a different hospital for more intensive therapy. He's going to come home for the weekends and I am going to get a break during the week. How nice! Making sure that I don't get overextended and overstressed is always a constant struggle. My counselor advised to set boundaries with my husband. This is difficult as he will find it difficult to be more independent and less demanding. I have to do it or I will go crazy. I am ready to give up things but not everything.
Yes setting boundries is a very good thing. Don't get caught up in caregiving and forget about you. Remember that you can only do your best when you feel your best. If not you will get burnt out. I was trying to please everyone and always put myself on the back burner and have suffered for it in many ways.
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