I Am a Stressed-Out Family Caregiver: Meet Donna Tulgestke

Denise

I Am a Stressed-Out Family Caregiver: Meet Donna Tulgestke

Denise
(Editor’s Note: We’re putting the spotlight on the stress involved in caring for a family member or friend and we’re sharing the stories of stressed-out family caregivers. Today, we introduce you to Donna Tulgestke, who cares for her husband. You can connect with Vickie on her profile page: @worried. Our questions and her answers follow.)

tree-616295_640Caregiving.com: Tell us about your stress.
Donna: My husband has Parkinson's and is totally disabled. I have to work full time to pay bills. I want to stay home to take care of him; I cannot pay some one to take care of him. I cannot have it taken out of his Social Security, it would destroy us. He wants me.

Caregiving.com: What have you tried to minimize the stress? Tell us about agencies you’ve called, organizations you’ve contacted, individuals you’ve reached out to for help.
Donna: I tried to get help from Department of Human Services. They said no, his disability is considered income so they can't pay me to stay home to take care of him.
I tried NEMSCA (Northeast Michigan Community Service Agency, Inc.). They said no, but I could pay them to come in and take care of him.
I tried the Parkinson's support group. They said no, but for me to call NEMSCA.

Caregiving.com: How has your stress affected your family, your career and your health?
Donna: This is something that keeps me up at night. This is not a problem that I need fixed right this minute but, within a year or two, he will not be able to walk or dress himself completely. He is showing signs of dementia. I have one teenage son at home who cannot deal with him. I cannot have him take care of the basic household things like putting away dishes or cooking. He does not remember anyone's name. It is getting scary. I work an hour away from home and am not able to get there if something happens.

Caregiving.com: What would help you most right now?
Donna: To know for sure that when the time comes when he is in need of round the clock care, I can put his mind and mine at ease that I can be the one to stay home and take care of him. That we will not lose our home and everything we worked for. I am not asking for a complete paycheck. A major paycheck. I just need to know that there is an agency in Michigan that would help a wife financially take care of her spouse. I was told that one of our kids could get paid to do it, but not me. How stupid is that. Like the spouse is going to cheat the government, but the kid wouldn't. Does that make any sense?

Caregiving.com: What resource has been most helpful to you?
Donna: None.

Caregiving.com: What’s it like to live with caregiving stress?
Donna: Awful.

(We’d love to feature your story–just complete our “I Am a Stressed-Out Family Caregiver” questionnaire. And, be sure to tell us how stressed you are in our simple survey.)

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Elizabeth Miller

I feel like we are all at the tipping point...like a huge caregiving bubble is exploding all over the world as people are living longer. I pray that you find comfort. Try to take things just one day at a time. Do you have enough time, energy, resources, and help to get by today? If you think too far out, it's too much. Caregiver hugs...

Chris

I can totally relate to your frustration. My wife is not in the same state as your husband, however her disabilities are just as frustrating and we have run into many of same hurdles. I live close enough to work to be home for much of her home health visits and yet still have the same issues getting the help. Seems I am told if I stopped working all together and medicare was all we had so many have told me they could do so much more for her. Then how do we survive I am 47 and she is 51.