Meet fellow Caregivers - Introduce yourself

Hi Colleen
I have finally found the way to respond. I am new to using my computer for much more than searching and emailing our family. I am learning more each day about Parkinsons combined with diabetes, and a stubborn husband who doesn't even try the suggestions his doctors offer. I realize that I cannot change his mind set, so I am learning ways to work around it. I have always been a person with routines and it's hard to adjust my routine and schedules to fit all of his needs. He does not drive, so when he wishes to go into town, I must fit it into my day. I am trying to learn not to feel resentful at being on call 24/7. We have been married for 41 years, have 9 adult children, scattered from Virginia to Hawaii and numerous states between, with none close enough to see often. They are supportive but we don't see them very often.
I have medical problems of my own, am undergoing numerous neurological tests and am waiting for results. I am able to be active again, following an aortic valve replacement seven years ago. I do relaxation exercises, and try to maintain a positive feeling, but some days are just too overwhelming. Our medical community is great, they keep in close touch, but like most doctors and hospitals, they are understaffed and sometimes the wait to see them seems so long. We live close to the hospital which is equipped to deal with everything but organ transplants, and the medical clinic has a walk in and emergency area, open 4 hours a day too.
I've had a good life, but oh how I miss seeing my husband's smile, hearing his laugh, enjoy his sarcasm, being able to "read" his moods and being able to discuss our feeliings about what's to come. Sometimes I just want to hear happy, friendly voices. I don't mind solitude, I have many hobbies and other interests, so I don't sit idle. I am glad to finally understand how to reply to this group. Please let me know if I am too wordy, writing is one of those hobbies. Thank you for being there for me.

I am Kay. I am a caregiver for my 45 year old son who had a bad motorcycle accident. He lost his leg, use of his left hand, and most of his vision. He is still getting surgeries and OT PT and its been 17 months. It is ... well you can imagine.

so good to read your post. what a good writer you are! I am very busy too and I love my own routine which is interrupted constantly with so many appointments and prescriptions not refilled and cooking supper every single day, and my son is diabetic, so supper is always a challenge. i try to take it one day at a time. I love to see my son smile. I love his voice. I still have that.

I know what you mean, I still give thanks for what we are blessed with every day, I learned to remember by doing a thankfulness journal some years ago. Now I try to start each day with thanks for all the blessings, miracles, and gifts I receive each day and help to appreciate all of them. It helps. You sound like a very dedicated and loving mother. Nice to know you.

thank you! I call myself the inept servant. I am always doing something wrong it seems and mostly because there is just so much that has to be done right and I am often exhausted and distracted, trying to do 5 things at once. I take it one day at a time and I think about it in terms of just one day. That is all that is promised, just today. i love him so much and I am so proud of him. He works so hard to recover and to smile and reassure everyone else. I am in his one bedroom apartment, he sleeps on the couch. He also has a tortoise. she's a really good peeer and pooper!
My situation has gotten worse. I have breast cancer. And my sister is dying of breast cancer. So just when you think it can't get any worse, it does. Now I think how wonderful last week was, when I didn't have cancer and my sister wasn't dying. So just in case next week is worse I'm going to really try to remember what is good aoubt this one day. I am able to grieve today. No appointments and no errands to run and leftovers for supper. i can be quiet and rest.

I would say you are a dedicated and loving servant, and your efforts are not overlooked. I do hope you remember to be good to yourself, I never understood "love of self" until I became an official orphan at 86 when my twin and last sibling died or lung cancer. I had lost one daughter, retired army Command Sargant Major from an incurable cancer she contracted during her year in Afghanistan. I began to realize that I need to trust that nothing happens without reason, I just have to trust my faith and do what I can. Exhaustion and distraction do happen, more often than I want to admit, but I release it when I can and keep trying. I am glad to hear that your son has a special pet, and such a good mother to care for him. I am sorry to hear that breast cancer has been diagnosed, and it happened to your sister too. I hope the two of you are able to help each other through it emotionally. l Life isn't easy, but it should make us stronger---some times that seems beyond us, but keep working toward it. Miracles do happen, I have been given so many in my life. Blssings to you and your son.

Hi @jannie59, I, too, am glad you found this group. You mention that your husband experiences crippling anxiety when he has to leave the house, even for joyful events. What strategies have you found that help to calm him? Have they changed over time?

Hi Colleen, our neurologist at Mayo has prescribed Lorazepam for these occasions. It does seem to help. I tried music, but he asks me to turn it off. He is still very A-type and does not like the fact that he can no longer drive. I am a good driver, but he visualizes things much differently from the passenger side of the car. I bought some fidget toys to distract him but he does not enjoy them. Our PCP also put him on Sertraline. This is helping him to enjoy times with family a little more. He is only comfortable and feels safe when he is home in his chair. Do you have any other tips I might try? Thank you for your kindness.

Hi my husband mom has lived with us off and on for over a year and half. Her husband passed away last July and other family tried living with her but most backed out after while. She would go back and forth from our house for a few months then back to our home for a few weeks/months. About 4 months ago she moved in with us permanently. My husband works from home and has dedicated the last three months into selling her home with an estate sale and things like that. Her home will go up for sale soon snd that phase of our journey will be done. We are still trying to find a balance but overall it is going well. I find myself getting burned out fast due to the fact we don’t have much family support in the area. We were hoping for a few good years with her but the last few months for her she has decided s little. We are blessed to have this opportunity but still trying to find the balance so we can be the kind of caretaker God wants us to be. Burn out is no joke but it’s not like we can step out of our lives to change that. So balance is our main goal on top of taking care of our loved one who is 85. We are blessed on good days she can take care of herself but bad days are more and more often. Thank you for letting me join! I have found many of the links helpful,

Hi! I'm new to this group. My husband has stage 4 bladder cancer and is undergoing chemotherapy and immunotherapy. The side effects have been significant. Probably the hardest is his lack of appetite. For the last 7 weeks or so he exists on 4 Ensures daily and water. I would appreciate suggestions about how to (gently..) encourage someone to drink their Ensure and lots of water. This feels like a constant battle. Thanks.