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When your life gets turned upside down

 

Question: In the past three years, my husband has had a big stroke, broke his hip, and had a pacemaker put in. He is home now and has been for just over two years. The only time he gets out of his chair is to go to the bathroom, to bed, to the doctor, and sometimes to my mom's house for dinner. When he wants something he starts to point and grumble. After his stroke he lost his speech and chose not to talk after that. I get frustrated and we start fighting. When I don't get up right away to fix him something to drink he starts to yell or keeps tapping his glass. I need help or someone to talk to about this. I work full time, help take care of my mother, and take care of my grandchildren on some weekends, too. Help!

Dr. Amy: Caregiving must be one of the most challenging jobs on earth. Suddenly, or with little warning, your life can be turned upside down and you are left with a whole new set of responsibilities. The work is physically and emotionally demanding, and it’s complicated by the effects of disease—cardiovascular disease in your husband’s case—and by family dynamics. The big myth is that somehow we should know how to cope. Not true! It can feel completely overwhelming. And that’s why we need support. Caregiving is not a sprint, it’s a marathon—days, weeks, and in your case, years of hard work. It can be richly rewarding and it can also be a really tough slog, especially if the person you are caring for behaves in ways you find challenging.

You are not alone. Millions of caregivers are feeling what you feel. Acknowledge and accept your feelings, and reach out for support. Join a support group. The simple act of sharing your story with others can bring relief. The emotional support and friendship fellow members offer can be very sustaining. Sharing tips can be a big help. The American Heart and Stroke Association has a support group finder on their website. I encourage you to check it out.

In addition to a support group, it sounds like you need to find other sources of support. I encourage you to think about who you could ask for help. Do you have friends or family members you can call on? If you are a member of a faith group, they may have resources. A geriatric care manager could certainly assess your situation and give you some great advice.

About your husband. Stroke affects everyone differently—physically, mentally and emotionally. As you likely know, a lot depends on what part of the brain was injured and how much damage was done. Regardless of what kind of stroke he had, it’s normal to be tired afterwards, since the body has so much to recover from. Depression is very common after a stroke and I wonder if your husband might be depressed. He went through a lot in three years. I encourage you to talk with his stroke rehabilitation team and ask about depression. If this can be managed, his overall recovery may pick up.

Is he getting the right rehabilitation? Rehab is an essential part of recovery. It’s designed to help stroke patients re-learn skills and regain their strength as much as possible. There are a range of services for people who have survived a stroke. Usually, these are discussed while the stroke survivor is still in the hospital. They will vary depending on the nature and severity of the stroke. There is an excellent booklet published by the US Agency for HealthCare Research and Quality that was written to help people who have had a stroke achieve the best possible recovery. This booklet outlines the services that are available to stroke survivors, and where you can go for more information.

See the link below:

Good luck!

 

 

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Thoughts and stories from others
  1. July 23, 2014 at 9:59 pm | Posted by Linda Joyce

    I can so relate to Amy's post. I am in a very similar position. My husband had a stroke almost 2 years ago. His right arm/hand do not function at all. He can put some weight on his right leg/foot for transfers. He can walk a few steps with a hemi-walker, but does not do so. He transfers from his chair to his wheelchair to get to the bathroom, or when I take him to medical appointments. He is demanding,wants what he wants the instant he thinks of it, and gets angry if he does not immediately get his way. I work full time, and spend the rest of my time caring for him. I haven't had any sort of break in almost two years. There IS NO STROKE REHAB TEAM!! The rehab he was in before he came home wanted him to move to the long-term care side. But I had visited there, and would not have done that to my husband. It was horrific! It may have been easier on me to visit him a couple of times a week rather than caring for him full time, but how awful it would have been for him! He is on antidepressants, as well as 5 other medications. He goes to physical therapy. But he has NO DRIVE. None at all. He talks about missing "how things used to be," but he just wants it to come back..he does not have the drive to make it happen. But I think the worst part is that I feel totally abandoned. We used to have family get-togethers a couple of times a year (a 6 hour drive for me). Now I don't even hear about them any more. And relatives have made unkind comments when we have talked, saying that I should not bring it up around them. I feel truly ALONE.

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