Hi Mary, How long will your husband actually be in the hospital after transplant? I had transplant at Mayo-Rochester. BMT patients are Out-patients so my confinement in the hospital room was minimal.
However, while I was in my local hospital for 5 weeks the first time being treated for AML, I kept busy with my iPad, watching movies, binged series, reading, writing, listening to music. Pretty mindless activities because my concentration was lacking. My husband brought my small watercolor kit & paper so that kept me busy making little entries for a journal or painting cards. Recovery at Mayo after the BMT (in my hotel suite) was similar. (At Mayo we’re outpatients and recover in off-site lodging)
The first few weeks after BMT are tiresome. Your husband won’t have a lot of energy and fatigue may be his friend for a while. So he may not be up for much. For amusement while being confined, little things like puzzles, adult coloring books, Zen-doodle, jig-saw puzzles, crossword/sudoku, take an iPad, laptop or tablet, (Don’t forget a small extension cord for the hospital room)
For you as the caregiver, do you have any small craft/art hobbies that you can bring with you in kit form? For my return to the hospital for chemo every 28 days, I was admitted for a week. So while home on break, I’d package up little kits of whatever I wanted to work on while confined with small sewing projects, art work, etc.
During transplant when we were away from home for 4 months, my husband kept busy daily walking the trail system in Rochester, discovering cultural centers and museums. He did all the cooking. so he’d have snacks ready for me when I felt like eating. He’d set up a small office furnished with his laptop, stamps, envelopes, paper, scissors, tape, etc., in one of the bedrooms where he could keep up with bill paying and correspondence. He’d grocery shop, do the laundry…wow, I had it made. LOL. Anyway, for him as the caregiver he said he was never bored. And oddly, once I got past the critical first couple of weeks, the rest was just an adventure for both of us.
One little thought…were you thinking of spending all day in the hospital with your husband? My husband wanted to do that initially too. He felt that he needed to be there for some reason. We’d been married 45 years at that time and he NEVER felt the need to sit with me 24/7 during any of those 45 years…maybe the beginning when we were just starting out together. But that was hormone driven. 😅. Now at 65, it was so sweet of him to want to keep me company but I quite honestly I just really wanted to be alone most of the time so that I could sleep!!!
Pulling on white gloves of diplomacy, befitting a government negotiator so as not to hurt his feelings, we came to a peace accord with abbreviated visitations. It was better for both of us! Just a thought…
How’s your packing coming along? Did you find a caregiver for your dog? That must be pretty heart wrenching for you!
Hi Lori,
I love your sense of humor! Thank you brightening my day!
We expect his hospitalization to be 4-6 weeks. I am thinking I will spend as much time with him during the day as I can but plan on taking breaks to get lunch, exercise, etc and meet a couple of friends for lunch or dinner now and then.
I’ve heard how difficult the first 14 days or so can be until grafting starts and I guess my assumption is he may need an advocate and or extra comfort during that time when he is most ill. I know I will be there to encourage him to walk daily and get as much nutrition as possible. I understand extreme fatigue will be a challenge, not to mention all the possibilities of other complications our transplant team had to share with us during our orientation.
My sister had an autologous transplant 15 years ago and she says her doctor told her she needed to have someone stay with her at night, especially the first two weeks, even though she was an inpatient. I have not heard that from any source about BMT or HSCT these days, have you?
It is still amazing to me that Mayo and some other cancer centers perform the transplants on an outpatient basis, again, given what I understand are the risks of complications and the various physical symptoms caused by conditioning chemo, etc. I am so glad it was a positive experience for you and your husband.
We are also fairly private people, don’t have a long list of family and friends who can be my back up as caregiver. Everyone has busy lives but I’ll welcome the times when they visit so I can take a break.
We are packing slowly and have gathered many of the items you’ve recommended and then some. I plan to decorate his room for our wedding anniversary which is the same day as the stem cell transplant, unbelievably. And I’ll put up a lot of family photos and other things to warm up the environment.
Our dog is set to be taken care of by a dear friend, but I dread the hand off on Monday. Just have to keep my head down and moving forward. And I’ll ask for lots of photos of her over the next month.
Thanks for your honest experience with how to manage visiting and giving ourselves some healthy space. I plan to bring some things to do with my hands and my mind while he rests or while I am away from him on my own. He is encouraging me to plan that as well.
I don’t expect to get bored especially with all the extra responsibilities I’ll have when we get home from the hospital. I just want to avoid burning out honestly.
Again, between you and @jrwilli1, you give me hope that we will make it through this and there is life after. Thank you!
Mary