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| Bill with his hospice nurse last week |
Regular followers of this blog have no doubt noticed that I haven't been posting on a regular basis.
I've been blogging since 2005, right before we moved to Delaware.
For long stretches I've blogged almost daily, sometimes even twice a day.
These days, since I assumed full-time caregiving for Bill in February of this year, my blogging pattern hasn't been the same, to say the least.
I've felt guilty about it, because I feel a responsibility to keep my regular blog followers up to date with my sometimes chaotic life.
Why should I feel guilty?
That's the way I was brought up folks. To feel guilt for anything that veers from the expected pattern of what others expect of my life.
Granted I've come a long way from those days (Day One to late teens) feeling guilt just for existing and taking up space on this earth. This the result of a constant barrage of verbal and metal abuse by my father who didn't want children.
He was a very selfish man. It wasn't until I left home at age eighteen and joined the Army that I began to experience a different view of the world and myself. That I actually had value as a human being and I didn't have to feel guilt for taking up space on this earth.
Then I met Bill and for the past fifty-seven years he has been my biggest support in life. I have been one of the lucky human beings in having this loving and lasting relationship. Big movie star sex symbols like Marilyn Monroe haven't been as lucky as I have and continue to be.
At this time of my life my waking hours and sometimes my resting hours are consumed with caregiving for Bill, my loving relationship of the past fifty-seven years.
I do not regret that responsibility and am thankful that I have the opportunity to take care of my love at this time of his life. However, it is exhausting and does take up my life now. I am literally on call 24/7, ready for the latest emergency.
Bill is fading. He is getting weaker every day. His cognitive abilities are worsening. He is wearing Depends full-time now. This after a very messy accident last week. Yes, Bill is now completing the full cycle of his life, starting out with diapers and ending his life in a diaper. He has accepted that fact, after initially resisting but after several "explosions" and then cleanup by me, he has acquiesced. He has also acquiesced into letting me have a respite from caregiving.
The hospice center can take him for a week every three months (ninety days) under their caregiver respite protocol. Initially Bill was totally against anyone but me taking care of him. Now he realizes that perhaps I can use a break. And I can folks. I am exhausted.
I don't know when I'll take advantage of this "respite care" break but it's good to know that I have that option. I may never use it but I get some relief knowing that I could.
Every morning, when I treat Bill's edema on his lower legs, Bill tells me he tired of living. I can understand how he feels. He can't see, he's weak and getting weaker. He can't read. He can't do his projects. But he says he doesn't want to leave me.
We're caught in a quandary folks. Sure, I know I'm to the first caregiver to be in this position. And my position could be a lot worse and for that I am thankful it is not. I keep reminding myself Bill knows who I am and he's not in pain. He can move around albeit shaking and slow but he can move.
With all this said folks, while I'm in this situation I won't be posting as much as I did before Bill's two stroke in January.
I am Bill's full-time caregiver now. I am a nurse/companion/live in EMT support.
With what time I do have off I have to engage in activities like playing online Scrabble, talking with my friends on Zoom and Facebook and reading to balance my life.
For those of you who have been with me on this long journey since I began my blog in 2005, my apologies. Yes, I do still feel guilty.
Now I have some Scrabble games to update.
Have a great day everyone!
