I suffer from some pretty severe mental illnesses as well as having a debilitating autoimmune disease. I was barely making it through a day at the beginning of this and it's worse now, even though we have home aids that come. My heart is really struggling right now, I try to keep in mind his dementia, but running out of the room to cry by myself isn't working like I thought it would. I'm scared for both of us. I don't know what to do.
your hubby may scream and yell. Mine sits and waits to be waited on and acts like a child. It’s very frustrating. Try to take time for yourself. Not minutes or hours but days. I love cribbage so I find a tournament as near as I can. I stay for at least two maybe three days. It does help me. It also forces the children to spend more time with their father and learn more why I get frustrated.
I hope this helps you. It took me a while to actually accept this time for myself. I hope you try it.
A Care Taking Support Group might be a helpful outlet for you as well as online forums like this one where you can vent and share your distress and maybe get some helpful tips!
Having someone to "talk to," even online or by email, can go a long way in helping you through this journey.
I often credit a sympathetic sister-in-law for "listening" to my rants and wailings while I was taking care of my husband as totally having Saved My Bacon on the Care Taking Trip.
I write from the perspective of the patient. My most recent Neuropsych Exam says I've moved on to Moderate-Severe Dementia. My DW and I have spent a lot of time and money planning out how we would deal with my Care Plan, and a Financial Plan. We've done this in conjunction with a very TRUSTED Financial Planning Specialist, and Estate Planning and Eldercare Lawyers.
Reach out to your Trusted friends from Church and ask if any of them know a Financial Planning Specialist, and Estate Planning and Eldercare Lawyers. All of my advisors have been people we know from our Church. We are now moving on to the last part of the Legal work that needs to be done because of circumstances that have changed, that could not have been thought of before.
Prayers will be going up for you. God Bless you both.
* What I feel you need is more self-care.
- FIND A THERAPIST
* Take time outs to re-set / shift your mind's focus.
- Do something you enjoy, from 5 minutes to 5 hours, depending on circumstances.
* Do find care / help / support - you have although it is enough? and what are you doing when they are there?
* Understand that you are grieving; you are losing the man you married and this is grieving in 'slow motion' - it is heartbreaking.
* Do you have friends you can talk to - support you emotionally?
* Are there organizations close (enough) by that you can call for referrals for support groups or to get a list of people needing support / groups?
* Allow yourself to 'fall apart' which means to me: 'releasing' blocked / locked up energy (grief) that needs to come out.
* Your heart is grieving and exhausted. What do you feel you need and what can you do? Make a list? let us know.
* EAT HEALTHY and exercise, meditate. I tell myself to do these everyday and perhaps around 70% I do. Do what you can. The key is INTENTION, AWARENESS, self-kindness, and re-programing yourself to do what you want and need. Even 10 minutes of quiet meditation helps me. In fact, I'll do it now.
Gena / Touch Matters
Please check with your doctor if you haven't aleady. A caregiver's life IS stressful. Besst wishes!
One afternoon I lost my temper completely. I was about to get hysterical when I saw a roll of paper towels near the bed. I quickly tore many off the roll. I crumpled two paper towels at a time to form one little harmless ball and began to throw these at my husband! It completely relieved my stress because I had something to throw at him that did not hurt him when it touched his body.
Much to my surprise, he took the balls I was throwing at him and threw them back at me. Not with a mean feeling, but he was so surprised by the balls, he was delighting in throwing them back at me. It was so much fun and it looked like snowballs in the air. We both started laughing so hard... it was like some sort of miracle of joy in the middle of all my stress.
I have been meaning to write an article about this for a magazine since I have not seen anything like it anywhere among all the reading I've done to relieve stress. Where are the joyful methods to help the near burned out caregivers?
From that point on I asked him permission to play paper towel ball whenever I got stressed out to the max. He said yes. I gave him his own roll of paper towels, a big basket and told him to make his own. I did the same thing. From then on when it got really tough with me I threw those balls. It worked every time like a charm. It's sort of like a pillow fight, but with only the very light balls flying through the air over the bed. They get lighter in weight as they fly through the air since they unravel slightly. In any event, I can only say I share this little experience in the hope it will help another wonderful caregiver in some way.
Honestly, I think this paper towel ball therapy would be great for healthy husbands and wives when they feel like an argument is getting out of control. I think it would work under most circumstances without harm, since as mentioned above when you throw the paper balls in the air they lose a lot of their fling power but do make it to the cared for loved one.
Prayer and patience are the key here, and living one day at a time.
My husband passed away in January (Covid) -- but because of these little flurries of paper towel balls I have some joyful memories of really stressful situations.
Just wanted to share the above if it will help at all as an interim solution.
I guess you could call this little game Paper Towel "Power Ball" :) It gives you the power to overcome a lot of stress which comes along with being a faithful caregiver.