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What to do.

I just want to tell my story.
For the last 19 years I've been a cargiver for my wife who has MS. She has such a good attitude about it even though her MS has progressed and is becoming harder and harder for her, of course my responsibilities have increased proportionatly. For the last 11 years she has been wheelchair bound. In 2003 I lost my job because of turning 60 years of age. I was hoping to continue working at some other job and use my IRA until I found work. Less than a year after my "retirement" my wifes condition took a turn for the worse requiring 24-7 care. She cannot get in and out of bed without help, she cannot use our bathroom, she must use a portable commode and a lift. There are bouts of diarreha. Basicaly I cannot leave the house for more than 5 hours at a stetch.
I do have a minimum wage part time job just for a little extra money, but not enough to reduce the dependance on my dwindling IRA.
I wish I could just get away and do some of the things I used to do with my brothers, I would love to go fishing again, or go out and do photography, but It's impossible. I don't dare talk to my wife about my feelings becase it just upsets her, and I know it's just selfish on my part to feel this way because of so much she lost.
Our daughter has been very helpful, but, she has her life too. Our son is in the Army in Iraq and can't help much, they all have their lives. I just don't have anyone to talk to about this. I am sad and angry all at the same time, yet feel guilty even talking about it. I just want a break, some time to get away for a little while.
I just want to know are these feelings normal? I don't know what to do anymore.

Thanks for letting me vent anyway.

Dennis

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Comments

Yes Virginia, there is a Santa Claus

On April 3rd, 2007 shady lady says:

Hi Dennis,
First let me say God Bless you for caring for your wife the way you do. I understand completly the sacrifices that you have and continue to make, believe me you are not alone.
There is ABSOLUTELY nothing wrong with your feelings, they are NORMAL. Please do yourself, your wife, your children, your brothers and your friends a favor and access the help that is out there.
Does your wife have Medicare? If not, GET IT. Individuals are eligible for Medicare after 6 months of disability.
Medicare will pay for help at home if a doctor agrees that the individual needs assistance, it sounds to me like there is no question in your wife's case. There are agencies out there that will come in and care for someone for a couple of hours or a few days at a time. Instead of wishing you could go out for a few hours, a weekend fishing trip is not out of the question.
Let's face it Dennis, you DESERVE and OWE it to yourself to check into this. Do not make the mistake of thinking that you are the only one who can care for your wife, and you shouldn't be.
The fact is that caregivers who do not have a well-rounded life, with plenty of opportunities for outside activities find themselves resenting the one they care for. Believe me, this is not a place you want to visit. Resentment seeps into every area of your life, and it is really hard to get away from once it has you in it's grips.
MS is a horrible disease and there are plenty of support groups out there for people who are affected by it. These people know first hand what it is like to live and care for someone who has MS. You owe yourself the favor of checking this out.
Please Dennis, I emplore you to take care of yourself too.

Finding help is not that easy

On January 5th, 2009 skywirelynx says:

Dennis,

I can well understand your frustration and anger. I'm 42, and have been married just under 11 years now. My wife also has MS, which we only had (correctly) diagnosed 4 years ago. We spent several frustrating years before that trying to help her with counselors and medical doctors who at best treated peripheral symptoms, and at worst discouraged further medical investigation. We have two children together, ages 9 and 6, so I've been carrying a superman load for some time now too. Although she has declined in health and ability for years, in early 2008 my wife had another relapse and has been nearly bedridden since then.

Needless to say, I don't get away much myself either. As a design engineer, and before that an electronics technician, trained to solve problems, living with this disease has been the most trying experience of my life so far. This is a situation without a solution. She's been on betaseron and tysabri, neither of which resulted in improvement, though the betaseron may have slowed disease progress some. (Of course, she'd had the disease for 15 years already before starting that treatment, so "slowing down" wasn't that encouraging.) Ultimately I expect medical science will find some significant treatment for even "late stage" MS, but probably not in our lifetimes.

I get not being able to talk with your wife about it. Probably your wife gets it from your perspective too, but her own suffering and need prevent her from acting on her understanding of your need. In fact, for my wife, this in itself contributes in a small way to her suffering.

TO shady lady,

I would add, help is not so abundant and easy to find. In our own situation, my wife never worked long enough to have any "credit" with Medicare or Social Security, so is now ineligible for any help from those resources. This would have been a welcome source of aid for several years now, but is unavailable.

We cannot attend a support group, since for at least 2 years now physically going there has been too much exertion for my wife. In home services are expensive, even if they're cheap ($10-$15/hr is not enough for anyone to really live on, and a significant amount of that is not going to the caregiver), so unless one has insurance that provides for such, it's out of reach for many people.

Our experience with help agencies is that an early gateway question is "Is she eligible for/receiving medicare?" If the answer to that question is "No", the next statement is usually a form of "I'm sorry there's nothing we can do. Have you tried __________?"

Mind you, I'm not closed to being shown to be incorrect here. I just have run into too many people who think there's all kinds of help out there, and there's not, at least for some of us.

Finally, on a lighter note, a joke. Three good friends had commuted together for several years, driving through the Lincoln Tunnel from a Boston suburb to Logan International airport. They shared the driving and took it in turns to pick each other up in the morning. While this helped to reduce smog and extended the lives of their vehicles, the repetition had side effects. Last year all three of them had surgery for carpool tunnel syndrome.

It has nothing to do with MS, or caregiving, but I hope it made you smile, even if while saying, "That was baaaaaaaaaaaad."