Positive experience with Palliative Care

bjtm1969

First I would like to thank all of the wonderful knowledgeable people on this platform that have helped me over the last couple months since I started visiting and learning from everyone. My husband was diagnosed 6 years ago with Mild Cognitive Impairment. Eighteen months later, during Covid, he was diagnosed with Multiple Myeloma, a blood cancer. After 16 weeks of intense chemo and immunotherapy, while getting ready for a stem cell transplant, we had a house fire at our main home in Illinois. Everything we owned had to be professionally cleaned or thrown away. Our home had to be gutted and totally redone. We spent three years fighting with our insurance company for every penny. Trying to keep our contractor on site was a nightmare. We traveled 250 miles every week between our home in progress and another small home we owned in Wisconsin. All while dealing with my husbands cancer treatments and memory issues. A year ago we moved permanently to Wisconsin and continue to downsize the many trailer loads of belongings and work related items we/he couldn't part with. Many of them very large and heavy boats, cars etc.

Moving meant new oncology and neurology teams. Once again I needed to try to work with teams who see things through totally different lenses. Fighting to keep my husband on supplements that would help his brain and neuropathy caused by the chemo drugs. Trying to maintain a healthy diet while having the cancer team tell my husband sweets are fine. Looking at the side effects of the cancer drugs and how that would affect his memory. I have kept a notebook since his initial cancer diagnosis, and I can tell them how my husband has reacted to drugs, treatments etc. As a former teacher, I am always prepared!! In voicing my frustration to his memory provider about the cancer team, she suggested we look into Palliative care. It was the research I did on this site that made me seek it out. Ironically, the Palliative Care team works out of the cancer center but they never mentioned this as an option, although they made the referral when I asked about it. We were told by several health professionals that the Palliative Care doctor was wonderful but that was an understatement. She was phenomenal! She spent 90 minutes with us with my stepdaughter joining by phone, as she lives 3 hours away. She had reviewed my husband's file in depth and had resources and forms ready to go. She was kind and engaging with my husband but also firm. We discussed his cancer and memory issues, care teams and how they were different in their outlook on treatment. We talked about my needs for respite and available options. She had the form and her certification for a DNR bracelet and very slowly went through it with my husband. We discussed driving and she decided my husband should no longer drive. Oh, boy this is a really tough one as he has driven hundreds of thousands of miles but I have taken over this task. He still has not completely processed this and it is a daily discussion. I knew from this forum it was time to do this but all of the other health care providers were on the fence about this issue. My husband was so comfortable with this doctor he asked her how long she thought he had to live. We have a very good family doctor who addressed that question in relationship to Alzheimer's but not the Multiple Myeloma. This was the first healthcare professional who knew enough abut both diseases to offer an educated answer. She shared that when the cancer returned it would be very aggressive and the Alzheimer's would also worsen quickly. She explained about the options we will have to work through when the cancer returns including doing nothing but keeping my husband comfortable. Not something we expected out of this appointment but certainly what we needed to hear. We have just finished working with a certified elder law attorney to get all of the important documents for both health and finances completed. The attorney was very knowledgeable and experienced working with clients with dementia. The office had a sign, "Dementia Aware." She even spent time alone with my husband so she was comfortable with the decisions that were made. I was headed towards getting this done but this group pushed me to do it right away. I saw our family doctor this week and he agreed with the palliative doctor on all issues including longevity. Finally, I feel like there is someone who can help us through the challenges ahead. I realize that we have an "off ramp" for this horrible disease and many of you do not. I will continue to pray for strength and guidance for our family and yours as we battle this enemy every day. God bless all of you. Barb

WIGO23

You are a real survivor with all you had to deal with simultaneously. I wish for you and your LO that you find some joy in the time you have left together. I wish that for all of us on this road we did not choose to travel.

annie51

This is an amazing story- so much to deal with at the same time. So glad for you that you found the wonderful palliative doctor. What a godsend!

SDianeL

so sorry about the cancer diagnosis. Glad you found a great And knowledgeable palliative care doctor. Praying for strength for you and your family. 🙏💜