In the past I could never get anything done with Marv in the house. He was into everything and the moment you were distracted he would try to eat a candle or put a dishtowel in the toaster and turn it on. He has flushed a depend in the toilet and used a whole roll of paper towel cleaning the sink, peed in the dryer and put away a set of keys so thoroughly that after five years I just found them in the garage in a box of airplane parts.
Now Marv is more subdued and quiet. He has balance trouble so sits and naps a lot. I still can’t get anything done when I have him at home. The problem now is that I just want to sit with him and snuggle or lay by him and read. I know that I’ll have to take him back to the ALF soon each time I have him at home so I just want to enjoy his presence in our own place. The dog and cat must feel the same as we will inevitably be all on the bed or, at the very least, in the same room. As my daughter pointed out to me we should “relish in the things that give us good feelings, even if it is a little wacky.”
With that in mind, I’m having popcorn for dinner.
I belong to a support group online and regularly read the posts from my fellow spouses caring for partners with dementia. Every imaginable question is discussed freely on this website from poop to sexuality. There is even one discussion thread called “Let’s have some humor,” where jokes are posted for folks desperately in need of something to laugh about.
A couple of days ago I was reading the questions and answers on cleaning up after a person. What product works best, where to buy, how to deal with the smell, how to deal with the delicate skin to make sure it doesn’t get rash or break-downs. Everyone in the discussion was so concerned and genuinely desperate to do the best job they could for their loved one. These same people at some point in the adventure will most likely be forced to place their partner in a facility and this is where my rant comes in. No one takes care of them in the facilities like we do at home. Why not? They are supposed to be professionals with all the experience and training necessary to handle the daily problems. I have seen people walking around with the same clothes covered in breakfast mid-afternoon. People who haven’t had a shower for days with the excuse, “well they said they didn’t want to shower.” Fingernails with crud caked under them from not having their hands washed for days. Men not shaved regularly. Womens hair uncombed. The problem is you can’t make people care.
We have experienced four facilities so I know it isn’t just a problem one encounters rarely. Of course there are some super human caregivers and we are fortunate to have enjoyed the services of quite a few. The ones that don’t do the basic care infuriate me. If you left your child at daycare and that child hadn’t been changed all day when you picked them up would you be upset? If that happened day after day I wonder what you would do. It adds to the stress and anguish for people already struggling with the guilt feelings of having to place someone they care for in the hands of others.
Fortunately for us I can spend a lot of time with Marv and take care of him at the facility while still having the freedom to do errands and take care of necessary daily house maintenance. Not everyone is so lucky to have such an arrangement.
It’s been over a year since the last time I visited this blog and updated. Time to see if I can get this going again. It was a good way of keeping things in perspective. For now I will just post some photos of Marv through the last year to get a visual idea of his journey. We moved back to Star Valley in September of 2012.
Wow, I can’t believe it has been since Christmas that I last posted! I guess it would be because things are being quite even and a nice routine has been settled into for us all. I think that living closer to Marv so I can see him everyday has been a good thing emotionally for all four of us. (We have to count the dog and cat.) It is a bit of an expense but what would we rather spend money on? Our intention was to enjoy time together whether it be traveling or just hanging out at an assisted living home where we can lay down together and have a nap. Can I help it if that is so sweet to me?
Life sometimes makes us stop and examine what is important. Maybe we don’t actually stop and think. Maybe we get smacked in the head with events. A precious, important life is unexpectedly lost. I realize we are missing something in our mad rush to accumulate stuff and make money. Sure, I know we have to have that to pay bills and carry on with living but I feel a sense of loss at what we forfeit in this struggle. It makes me want to slow everything down and force myself to really experience moments.
Today I took Marv for a little drive over to Robin’s house and we sat in the deck swing while visiting. The sun was shining though it wasn’t really warm out yet. He made little comments about the cat and the angel statue and the birds. I think he would have stayed there all afternoon but it was time for lunch. He got right in the car easy as you please and was happy to be back where they put his meal right down in front of him when he sat to the table. He ate every bite and was ready for a nap. Anyone would love a Sunday like that.