Meet fellow Caregivers - Introduce yourself

Hi, my name is Heather. I am 66 and my husband Jim is 68. He was diagnosed with Stage 111B Lung cancer. I have cared for him through other surgeries,(two back, triple bypass, two heart attacks) but this recovery has been extremely difficult for us both. Trying to get him to eat and drink has been so hard. He has lost so much weight. As a caregiver I am trying hard to not feel inadequate. It's certainly not for lack of trying. He has very low blood pressure and has fallen a few times. I feel that I'm talking to a brick wall. I put food out for him and he doesn't eat it. The radiation affected his esophagus and it has been hard for him to swallow. This is improving a bit each day. The coughing at night wakes me from a sound sleep. I know I'm rambling but it seems this is a safe place to let it all go.
I love my husband of 40 years, I want to enjoy many more with him. This is hard stuff and I thank you for this place to get it all out.

Hi, my name is Janice, I am 63 caring for my 74-year-old husband with Amnestic Alzheimer's (zero short term memory) and Lewy Body Dementia. I work full time (from home) and have found great support and education hearing about the experiences of others on this journey. I work at Mayo and my husband receives excellent care in Mayo Neurology. He is on several medications, suffers from crippling anxiety when we leave the house for family events, doctor appointments etc. He also suffers from PAD of the lower legs. He no longer drives of course. I use a white board to help him remember the day, time of year etc. However, as this disease progresses, I see signs of some confusion, and he no longer remembers to look at the white board. He is lost when I leave to attend to an errand, but I can still leave for an hour or two safely. Thank you all for sharing your heartfelt wisdom and outpouring of support in this group. I am thankful to have found this group. I also attend the HOV zoom dementia caregivers support group weekly.

@dorsie Oh, oh, oh. This just sounds like too much for you to handle! Does your husband see a neurologist for his Parkinson’s disease? Is there someone in their office that might help to start a support group?
This office in the federal government may have some ideas of what your state has to offer. Most cities also have an Agency on Aging which can also help.
https://acl.gov/about-acl/administration-aging#:~:text=The%20Administration%20on%20Aging%20(AOA)%20is%20the%20principal%20agency%20of,%C2%A7%203001%20et%20seq.).
Have you given any thought to assisted living in your area? You could probable get the help you need there.

The statements you are making I can relate to deeply. I love my husband so much, but when you said “I feel like I’m talking to a brick wall” I whispered, “That’s us too!”. Feeling inadequate as a caregiver has been a challenge of mine too. You sound like you’re doing everything possible to care for your husband. Those treatments can really change someone’s appetite and ability to stay connected to daily activities. Correct? I’m sending you a caregiver hug —— you’re doing great!

SO hard when you feel like you’re taking their condition more seriously than they are. I empathize. Almost like a power struggle with the pain meds —- her power struggle with them. I’m so sorry you carry this burden. This stuff isn’t easy. I sometimes get the feeling that the outside world thinks the caregiver is supposed to perform like a perfect character in a version of “Father Knows Best”. There are still occasional arguments or disagreements. Still stress and tension from the caregiving role. And even though I empathize I don’t have any wisdom or advice or answers. I”m going through struggles with watching my husband NOT do the PT exercises and get weaker every month. Watching him NOT watch his sugar intake and my seeing his blood sugar ratings spike to alarming highs. I guess I would say that we as caregivers give “compassion in action” —- we may not have sweet words and tenderness on occasion, but we’re there every day offering the help and care continually. Sorry that I don’t know answers, but you sound like you’ve got a tremendous load with her care needs and your own.

Thank you for your caring reply. Something that we tried yesterday might help others. Jim is a numbers guy so we talked about him keeping track of his caloric intake and water. He's on board with it and it's taken some pressure off me. One day at a time, right?

Thank you for understanding. It helped me just to read your reply and know I'm not alone. Many blessings to you 🙏

My name is Nadia Benab from Washington, DC. I am the caregiver for my beloved husband with Parkinson’s and dementia

@nadbenab Welcome to Mayo Clinic Connect! Caregiver members share their tips and solutions for helping each other through difficult situations. It’s a great sharing group!
Do you have a specific question that you would like to share with the group?

Thank you. We are trying to age in place. It is no longer affordable to live in DC and trying to find reasonable assistance at home is difficult. We made a mistake not getting long term insurance for home care.