A little history first:
My caregiving journey started 13 years ago. I'm now 56 years old. I was 43 when my wife had a stroke at the age of 41. She was parellized on the right side and suffered brain damage. She was in intensive care 36 days. Stopped breathing 3 times but was revived each time. Her Dr said she would never breathe on her own again (he was wrong), 90 days of pt and it and speech therapy. I was told she would never walk again, (they were wrong). After inpatient therapy we moved to outpatient. That lasted 2 months until insurance ran out. At home we worked daily on building her strength and balance. At the age of 43 she was walking again and dressing herself and even becoming more independent. Now the brain is a different animal altogether. She has aphasia, apraxia and has maybe a 100 word vocabulary. We changed our dog's name to booboo because that's what comes out when trying to say any name (he doesn't seem to mind). Waiters don't like it much though lol. That's how she is to this day.
Now a little about me. I worked for the company I was at for 11 years when she stroked. The company put up with me for about 6 months after the stroke but fired me due to missed time ( I put my wife before the job so I understood and no bad feelings on my part). We lived off of savings and with help from my parents. Once I felt safe leaving her alone I started my own business and was just getting back on my feet financially. It allowed me to support us and still be her primary caregiver.
That brings us to 2014 and the rest of the story. My parents were 84 years old then and both fairly in good health. On Christmas Eve my father had a stroke. The entire family was there to celebrate but me at the time. My mother called and said something was wrong with dad and would I come over and see. I rushed over and the party was going on in living room( mom didn't tell anyone else as she didn't want to ruin Christmas). I gave him aspirin right away and called 911. Ambulance and fire department came and wanted to transport him immediately. He refused and they couldn't force him. So my sister and I stayed with him till Monday and took him to his Dr. His Dr yelled hollered and screamed about how stupid he was. He went for all sorts of tests and he was oked to stay home. Results were what the Dr called a mini stroke( no such thing in my opinion). Weakness on right side and unable to walk or care for himself. My mother tried to care for him but it was too much. So in February of 2015 I became his caregiver. My mother is in the beginning stages of dementia and is now in my care even if she thinks I'm only here for dad. That's where we are today.
This brings me to my question. I don't think I'm depressed but I am sad, tired, lonely, and grieving for what I lost. When my wife 1st stroked we had friends. At first they would come by and visit in hospital but slowly drifted away. Once we we're home they would invite us to dinner or to go out but physically and financially we could do what we used too and I guess they didn't understand that. Soon the invites stopped. My family was great support while she was in hospital but once we we're home everyone went on with Thier lives. I am still very grateful for them. About a year after my wife was walking again we went to visit the parents. Only dad was home. He told us mom and my sisters were out for a girls night ( a prestroke event my wife would be invited too). When she heard she wasn't invited she smiled her crooked smile but tears filled her eyes. I called Mom the next day and asked why Susan wasn't invited. She said they didn't think she would of had fun. It was the only time I've truly been mad at her (at least till my father's stroke).
I have a brother and 2 sisters that live In the same city. I have 2 other sisters on the east coast. 1 local sister is raising her 3 grandchildren so she can't help much. My other sister that lives locally come over sat morning and stays till Sunday night to give me a break. Even then I go home take care of my wife and do what needs to be done at home. My brother helps with Drs appointments but can't deal with bodily fluids or can but doesn't want too. The east coast sisters come down a week or so every year but that's more of a visit than help.
So I greive for the loss of my wife even though she's still with me. I greive for the slow painful loss of my mother to dementia. I greive for the loss of my father's strength who just wants to stay in bed till he dies. But most of all I greive for the loss of the freedom to go where I want, do anything I want, and the life I dreamed I'd have.
But Im a caregiver and I couldn't live with myself if I just walked away. So I'll take joy going to McDonald's for a big Mac and be happy the house didn't burn down in the 10 minutes I was gone. I seriously look for smoke and listen for sirens everytime I leave and pray it's not my house. What a life we lead.
When I was caregiving my Mom (and, she was actually in a facility) my out of state sister happened to call when I was out. My DH told her she had to give me some respite and step up to the plate. We were all retired but there is still a LOT to do. She started coming up a week each month and she would do the daily visits at my Mom's. Once during each week, we would take my Mom out of the facility as we needed two to do that. It was a special treat for Mom and I got some rest on the other days sis was there . Perhaps your sister that does help with your folks can put a word in for the out of state folks and at least make their annual visits more help and less 'tea and crumpets'.
Finally, think hard about others in the area that might help in a variety of ways. Does your Wife have family in the area? Friends or former friends? Can they visit with her? Can you suggest that she might like to hear about what is going on with them over tea? I used to set up afternoon visits for my friend with ALS. The visitors would bring coffee from the nearby coffee shop and some bakery treats. Though my friend wasn't able to do a lot of talking she loved hearing about what the others were doing. We gave the caregivers a 2 hour break for them to sleep or go out on their own and everyone benefitted.
What I am saying is that YOU need a break too. You are doing a fabulous job but before you break, accept/initiate help from others. God bless you.
Thank you for sharing your journey with us. You are a good and loyal man to care for your wife. I'm so sorry you haven't had more support from friends and family. It is frustrating and disappointing and hurtful.
I wish life could sometimes cut us a break, but it seems sometimes everything just piles on. I'm sorry to hear about your mom and dad as well. I think its both. Its depression and grief. I had this too with my dad. I had to do everything and in that moment I never saw the light. I told myself I would keep going but I also had issues with my siblings and that made it harder.
I wonder if you would consider talking to a therapist or joining a support group. Maybe talk to social worker and see if there are any more resources you could access through the community or church. Try and give yourself more of a respite. I too felt like I could never walk away, but I have to say I was extremely resentful and angry after almost 20 years of being the loyal and dutiful one. Remember your needs to and look for options.