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At the end of my rope
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Posted by bevinpa (My Page) on Wed, Jan 14, 09 at 22:44
| HI everyone I have been lurking on this board for almost a year and I just wanted to get some feed back on my situation. My husband had a stoke on the right front lobe of his brain almost 5 years ago at the time we lost our grandson in a car accident. Since then he has been going down hill but this last year it has been horrible. He thinks he has to go to the bathroom every 5-15 minutes, but that is only the beginning of this horrible disease. He can not dress himself now, he can not shower right he forgets to use soap, he will get in the shower but that is it. I keep his meds out of reach because he would take them all at one time. He eats constantly and doesn't sleep well at night, he will get up and eat anything whether it's ediable or not. I take him to daycare 3 times a week so he will have something to do, but they say I have to stay with him because they are under staffed and he has to be watch closely, which sure doesn't help me out at all. The day care is supposed to give me some down time LOL. The doctor up his meds to see if that would calm him down, he is very active and won't sit still. Within the last two weeks he has fallen 5 times because he shuffles his feet when he walks,but he still wants to go outside. I hide his shoes and coat but he hunts all day for them. The doctor said the next step is a nursing home, but I really don't want to do this. My children are very supportive and take him so I can work 1 day a week, but they have young children and I can't ask them to give time up from their small children. I am getting to the end of my ropes but the doctor says that my health is in danger, I guess I just want some advice as to whether I should put him in a nursing home or not. I forgot to say he is 74, and I can't believe how fast this is going downhill. I am 67 and very exhausted. Thanks for letting me blow off some steam Bevinpa |
Follow-Up Postings:
RE: At the end of my rope
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I suspect you already know the answer but Yes, you need to put him in a nursing home. The only other option is to hire in home care but the cost can become more than what you pay a nursing home. You need a little of your life and he needs more attention than you are able to give him. Ask yourself this, are you being fair to him by trying to take on all or would he get better care at a nursing home?
This is just my humble opinion..............
May the Power of God be with you and your husband, Linda J |
RE: At the end of my rope
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| It's always hard to advise someone to send a loved one to a nursing home, but often it is the only solution. It's impossible for you to keep your health and watch him 24 hrs a day. Then what happens when you get too ill? At this point, it is a matter of safety for the both of you. If you destroy your health, what kind of burden will your children have if they have to care for the both of you? At a NH, with all it's problems, he will be in a place that is designed to keep him as safe as possible. There is staff there to watch him 24/7. Take care of yourself. At this point, YOU are the most important one. |
RE: At the end of my rope
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| Agree with Linda and Agnes above. There's a time for everything. Sadness and/or disappointment don't alter reality. Suggest acknowledging your (and his) reality and taking appropriate action. From your post, it appears to me you're over your head and have been for a while. Looks like nursing home time to me. |
RE: At the end of my rope
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| I had two doctors tell me I had to get rid of the tension or i would die before my husband then who would take care of him. The symptom of my failing health showed up in my eyes. I saw colors and jagged line in my vision, the eye doc said they were caused by vascular problems in my brain which was caused by stress. I started looking for a care home shortly after that. i've only had one episode since then. |
RE: At the end of my rope
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| There's nothing "bad" about admitting that you can no longer keep up with caring for your husband. Placing him in a nursing home is NOT neglecting him. It's providing him with care and also providing you with care. You can visit him daily and oversee his care. But you'll also get a chance to revive your health -- mental & physical. It's a hard decision to make, but sometimes it needs to be done. You have to face the reality of your situation. You sound absolutely exhausted. As others have asked, what will happen to your husband if you become too weak to care for him? What if your children end up having to take care of both of you at the same time? A nursing home is not the perfect answer. But you're not Superwoman and you probably aren't as rich as Donald Trump. So you have to do what you are able to do. That's what nursing homes are for. |
RE: At the end of my rope
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| That is one of two reasons that I envy the rich. They can afford to hire someone or 3 someones to care for their loved ones at home and their time spent with the loved one would be quality time. |
RE: At the end of my rope
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| I am in the same spot you are and my DH is only 51. I think that you have to think of yourself because if you aren't here to take care of him who will. Don't know if you qualify for the medicaid waiver or not but they may be able to get someone for a few hours and few days a week. Sending him to day care and you have to be there defeats the purpose because you need the time to get things done or just relax. Even go to lunch with friends. |
RE: At the end of my rope
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| I am so sorry for your situation. As painful and difficult as it is, the reality is your husband needs to be in a nursing home. The right frontal lobe of the brain is the "secretary", so to speak, of the brain. It's what controls our social impulses, memory, gait, etc. I learned this when my mother had a brain tumor in the right frontal lobe. I tried to care for her at home, but it was not possible and I was exhausted and ready to snap. When it becomes a safety issue, then it's a serious thing. Start visiting some homes now, so you can make a decision without being under immediate pressure to place him. Stargazzer, it would indeed be nice to be able to afford to have 24/7 in-home care for our loved ones. But that, too, is fraught with stress. High turnover, managing/monitoring the caregivers, and worrying if someone does not show up for his/her shift are just a few of the concerns. There's no one perfect solution, unfortunately. |
RE: At the end of my rope
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| I just want to give you a hug ((((bevinpa))))) even if it is only a cyber hug. I am so glad you have the support and understanding of your children as you cope with what has happened to your husband. You have obviously done all you can for as long as you can and then some. I saw my Mom go through what you are with her second husband. For awhile we were concerned that she might die before he did because of the stress and lack of rest. He had Parkinson's. Near the end he couldn't even scratch his nose when he needed to and even though we helped all we could most of the burden was on her. When the feeding tube had to be put in the decision about the NH was taken out of her hands, with that and other health concerns he required more medical help than she could provide. Ultimately only you can make the decision of course, but there are things that I hope you will think about. If your able to put him in a NH near by, you should be able to visit him regularly, perhaps almost daily. Your time together will better than the time you have now, you will be rested and refreshed during those visits. You will have time to enjoy your children and grandchildren and new things to share with him if he is able to understand your conversations with him. As someone else said, it isn't a perfect solution but it will go a long way toward giving you back your life while continuing to protect his. Whatever your decision I pray God will bless you and strengthen you in the days ahead. |
RE: At the end of my rope
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| Hi bevinpa, I was just wondering how you were doing and how things are going for you and your family. Middlechild's advice and comment seem to be right on and given with love and concern. Please let us know how things are going.
Hugs,
Terri |
RE: At the end of my rope
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| Well I made the decision to put husband in a NH. It was the hardest thing I ever had to do. but it was time. It is very hard when we go to see him, he wants to come home. Today I had to fill out medicaid form which is a first, but we live on social security and I have no choice. Just hope they leave me enough to live on, everyone says not to worry but that is easier said than done. I want to thanks all of you for your support and will keep you updated thanks again bevinpa |
RE: At the end of my rope
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Bevinpa:
My heart goes out to you. I remember the sorrow of putting my Mom in a nh. That was 3 years ago and we didn't think she would make it this long. The medicaid paperwork is stressful but just take it one step at a time and it works out. My biggest problem was feeling overwhelmed but just do it step by step and it gets easier.
I know how you feel when he wants to come home. That's a constant occurrence with me as well. You must keep reminding yourself that if you hadn't made this decision, you may not be there to visit him at all or to enjoy your family. You did what you were able for longer than you were able to actually. Take care of yourself and God Bless.
Sis |
RE: At the end of my rope
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| Itis a hard decision to make but you can only do what you can. You have to save yourself. When I had money issues I worried all the time and I really didn't need any more stress. After about 2 years I finally gave it to GOD and I still had the same amount but paid every thing that needed to be paid and didn't worry. I do know that it is easier said then done. Good luck and keep up posted. |
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