Guest danibart Posted September 8, 2007 Share Posted September 8, 2007 My husband had a stroke 3 years ago. Our son was two years old then, he was 56, I was 32. His stroke was massive, left him walking with a cane but with global aphasia and apraxia (he cannot say a single word, cannor read or write) and he is now also showing some symthoms of dementia. He has seizures (now controlled with nedication) and is totaly dependend on me. To make things worse, his own family, his own MOTHER sued us over the house my husband purchased 30 years ago. After two years of legal battle (I was the one fighting, of cource, he couldn't) we eventually won but it cost us most of my husband's savings and emotially totaly drained me. His family has abandoned us, I have no family in US at all to help me. I have to do all the work around the house, raise a child, work and take care of him. I am frustrated, exhausted, we have no money but do not qualify for any financial help. My husband's dementia is driving me crazy, he is very hostile towards strangers, makes faces at people in passing cars or starts to sing in a restaurant and makes inapropriate gestures to people etc. We live in a very nice community that belongs to our church so I do get emotional support and occassional help from my neighbors but that is sporadic. I have tried to make peace with myself accepting the challenge from God but I feel I cannot go on like this. I do not like my life. We do not live like a family, do not go anywhere often because I am embarrased of his behaviour, we cannot even get away because it is financially impossible, I just feel like a trapped animal. Lately, I feel that I do not love him anymore because he has changes so much, he is not the guy I married. I feel like it is my duty to take care of him but I am not enjoying it, I see no light in the tunel. I did not mind doing this when he was "just" disabled but now with his dementia, it is becoming unbearable. I think I should stay with him because he has nowhere to go but I will pay the price for it with my own sanity. Any ideas? :Sob: Link to comment Share on other sites More sharing options...
preluki Posted September 8, 2007 Share Posted September 8, 2007 Dear Danibart, I wish I had some advice for you, but you found the right place for the support you need. You are not alone, I have conflicts with my family as does others here. Fourtnatly, we are all here for support for you and your family. You are not alone. I will keep you and your husband in my thoughts and prayers. Doug Link to comment Share on other sites More sharing options...
dstraugh Posted September 8, 2007 Share Posted September 8, 2007 Danibart, I am a survivor also. I can tell you that we have several Caregivers who are experiencing the same with their Survivors. arogers, hostsue, and jriva are a few. You can pm them if they by chance do not respond to your topic. arogers (Ann) has reported that her husband has been on medications that have greatly helped him. Caregiving is a tough job - Caregivers are Angels here on earth in my book. Bless you for what you are doing as well as enduring. You are not alone. Is your hubby receiving any therapy at this time? You can check with your local colleges - many times one can enroll in one of the speech programs where the students are therapists. They are well-supervised from what has been reported and very affordable. You also stated you get some help from your church - call on them as needed to assist you. Please return often to see what others post. You are all in my thoughts and prayers. (((hugs)))) Link to comment Share on other sites More sharing options...
arogers Posted September 8, 2007 Share Posted September 8, 2007 Danibart, Good Morning. I am a caregiver to my husband who is a stroke survivor of nearly 3 years post his first massive stroke. He has been experiencing Vascular dementia for a little over one year. His emotions are "flat", meaning he has very little sense of humor since he has extreme difficulty grasping the intent of a conversation. He has experienced emotional lability with tears. He has taken Aricept and Namenda for about a year and until this last Thursday was in pretty good control. He has bottomed out, however, and sporaically is cognisent of things around him - though he forgets within a very few minutes things that have gone on around or involving him. I am sure your husband is a medicare recipient and a recipient of Social Security Disability. I would encourage you, at this stage in the progression of dementia to contact your husband's physician or neurologist, make an appointment and review the situation with them. I have come to realize caregiving DOES come in different forms. The way you may now need to care for your husband is by selecting a skilled nursing facility and rehab center that might provide the care he needs. I know this is a very difficult time for you, and it has been for me. I've felt I could care for him at home better than anyone else. In many ways that is true - however, I have had to remind myself that if something happens to me my husband would be in a terrible place. So, there is help for you. No doctor in his/her right mind would not acknowledge that you need a rest. You love your husband, you want to take care of him an you can do that. It is very difficult to accept that YOU are in charge now, but that is the fact of the matter. Your decisions will take care of all of you. Please keep in touch, Link to comment Share on other sites More sharing options...
bstockman Posted September 8, 2007 Share Posted September 8, 2007 Well you certainly have your plate more than full with your husband and a young son. Was your husband ever in the military? If so contact your local Americal Legion. There is help for Veteran's with medical, prescriptions, and even often someone to come in and help you. You may have to put your husband in some type of nursing home. but as others have said, ... see a neurologist or psychiatrist who deals with stroke patients and or dementia. Will keep you in my thoghts and prayers. Link to comment Share on other sites More sharing options...
ksaul Posted September 8, 2007 Share Posted September 8, 2007 when i was reading your post i could feel your exhaustion and need to make some important decisions regarding your husband's care. the care and needs of caretakers are so often forgotten. i really feel that the replies you have gotten and the sugestions are excellent - you most certainly are not alone! i just wanted to suggest again that you speak to your church - so often people want to help but are unsure of what is needed - speak up and ask for the help you need. as others have said it may be the right time to let go of the 24/7 care of your husband and have him cared for by professionals. you have fully committed yourself to his care but it sounds as if his needs are growing and you must care for yourself and your child. i am sorry and sad that yourhusband's family have been so awful - but please don't give up - and please keep us posted as to how things are going. i will keep you and your family in my thoughts - kathy Link to comment Share on other sites More sharing options...
2ndChance Posted September 9, 2007 Share Posted September 9, 2007 DaniBart: If you tell us what state/metro area you are in, we might be able to give more specific referrals. And you are wrong if you think you do not qualify for financial assistance. If your husband was employed before his stroke, he is eligible for Social Security Disability Benefits - they are NOT dependent upon your current income. You can apply online here: http://www.ssa.gov/d&s1.htm 2ndChance Link to comment Share on other sites More sharing options...
lady k Posted September 10, 2007 Share Posted September 10, 2007 according to your info you are in california, here is a link to a we site to help you find out what benefits you qualify for, i would think at least medicad, social security disability, food stamps,tanf but check it out. california government assistance locator Link to comment Share on other sites More sharing options...
Louise1 Posted September 11, 2007 Share Posted September 11, 2007 Dear DaniBart, It's true! You are not alone. You will get so much advice and support from just this one website. There are survivors and caregivers who will give you all kinds of information. These are people who are in the same situation that you and I are in. My husband, Tony is 46 years old; he had his massive stroke 5 months ago, he is paralyzed on the right side and has global aphasia (the only word that comes out of his mouth is "no"), at this stage he is extremely angry and it seems to be directed towards me. I have asked many questions but mostly cried and vented on all these wonderful and compassionate people. You will come to realize that people here are more of "family" than just someone at the other end of a computer...There is financial help available as well. Tony is on SSDI and MassHealth. The paper trail is overwhelming (sometimes you feel like your personal and financial lives are under a microscope)! You'll hear this phrase often "God never gives us more than we can handle"--and others here have said this--"BUT I CAN'T TAKE ANYMORE"!!! You'll be surprised at just how much strength you have. I have been told over and over by so many people here and at work to take time for myself. Right now I have a difficult time doing this. I still feel that I have to do this all by myself. I have to ask for help from others and trust that they will be there for Tony and me. We will get through this!! God Bless You and your family. Louise Link to comment Share on other sites More sharing options...
fking Posted September 12, 2007 Share Posted September 12, 2007 Daniela, I welcome you again and wish I had ideas to your topic, "do not know how to go on." Your case closely reminds me of what I went through from the finance point. Years later I'm still in debt and my stroke condition has not been good lately. I'm the survivor but life with my care giver is not great at the moment due to her working, me trying to continue working while my physical condition seem to be going downhill. I've stopped trying to do all the cleaning and dusting around the house. I just change the filters in the refrig and the air conditioner unit, get the cars washed, oil changed and pay to get the yard kept up. I ask myself the same question about every week while being retired military, I'm used to things being very clean and in order. It was three years ago when I had my stroke and came home unable to walk so my wife had to quit her job. I think I about drove her crazy during the first two years. Again, I have no idea what to suggest to you in your case but I pray you find a solution soon. Link to comment Share on other sites More sharing options...
lmouat Posted September 12, 2007 Share Posted September 12, 2007 {{{{{{{{{{{{{{{{{{[Dani}}}}}}}}}}}}}}} My thoughts and prayers are with you. I hope you have a hobby you can vent your energy toward. My hubby is my caretaker and his golf is his salvation! I sometimes resent the golf but am glad he's got something besides taking care of me. Taking care of yourself is likely at the bottom of your list of "must dos," however, I know that if you will spend some time taking care of you, things won't look so dark and life will be more managable. My :Clap-Hands: applause to you for the care you've taken care of your spouse! Many turn away from trouble but you've chosen to face it. You aren't alone, new friend, you now have a great bit family right here! Coming here is a big step in taking care of yourself. Stay in touch, please. Miss Linnie Link to comment Share on other sites More sharing options...
lisas Posted September 13, 2007 Share Posted September 13, 2007 Dani :welcome: to a wonderful websight with lots of caring people. I'm sorry you're having a difficult time. Remember as a caregiver, you need to take a break and have "me" time. You deserve it. I too am a caregiver to my daughter Rachel. She is 23. She had her stroke last year. It's not always easy, but we take one day at a time. Do you have a stroke support group you can go to. That helped us out a lot. Do you have anyone from your church family who can sit with your husband while you get out?? I come here often for morale support and gobs of information. Glad you found us. :friends: Link to comment Share on other sites More sharing options...
Guest SMCaregiver Posted September 28, 2007 Share Posted September 28, 2007 Danibart - I know what you mean when you say that the "dementia" is much harder than anything physical. My husband has had serious medical problems for many years and we handled it beautifully. But since his stroke 5 years ago, he has "thinking" problems. He also cries at the drop of a hat. These kinds of problems do change a person drastically. It changes who you are. Are you sure it's dementia? Is that what the neurologist says it is? It might just be the damage to the brain from the stroke itself. I try to be around other people as much as possible. I need to talk to people who can think in a rational way. You do find out who your real friends are. Some people don't want to go out with us anymore. They only want to go out with me. Can you get your husband in a support group? Hang in there. Just talking to people on this web site is sooo very helpful. God Bless you. Link to comment Share on other sites More sharing options...
rabsparks Posted October 19, 2007 Share Posted October 19, 2007 I am a stroke survivor. I was single, but dating a girl when I had my stroke, the first of several massive strokes this past year. Jennifer had infinite patience. Patience when I wasn't sure if she still loved me, patience when I got angry when she told that she wouldn't leave along when she went to doctor, patience when I challenged what she was doing after I got home from the hospital, etc. Fortunately I got over the anger and she put all the stuff I did behind her. Forgetting about my behavior was very important to me, and I hope your husband does the same. I realize that you didn't bargain to be a caregiver. Please forgive your husband for the things that he does. It's pretty rough right now, and it's doubtful that he knows what's going on in his mind. rick Stoke happened January 29th Open heart surgery was 3/22 I married Jennifer 7/17/07 Link to comment Share on other sites More sharing options...
Merly Posted November 2, 2007 Share Posted November 2, 2007 Ohh my dear, I see there has been much good advice given already. I would like to add the following. Stop blaming yourself. Get some respite (ask your/his doctor, your church, anyone who will help) and take a few days just for you. Then think about how much you are able/willing to do. It is important that you take time out to get your head around what is happening now and whether or not you can deal with it. It is more important just to find some time for yourself. If a carer cannot care for him/herself, how can they take care of others? My thoughts and prayers are with you xxxxx Link to comment Share on other sites More sharing options...
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