Yes, two years really have passed since Marv crossed the final border. Today on FB Memories an article came up that I had shared back in 2013. It was a good read then and today. I was reminded particularly of how important the reassurance of love is in our relationships, not only in the case of dementia but especially so then.
Here is the link for the article. http://magazine.nd.edu/news/42845/ It’s titled “Crossing Borders.”
This paragraph is so accurate to my own experience that it still hits me.
“The first time she said to me one evening, “I want to go home” — among the few sentences she still speaks — and I said back to her, “Honey, you are home.” That scene now plays out nearly every evening. Sometimes she says, “No, my home is far away,” and she gestures with her hand, waving to a place beyond our walls. “No, honey,” I say, “_this_ is your home. You’re home now.” I ask her to describe the home she wants to go to, but she can’t, so we argue back and forth till finally I convince her she is home. Sometimes it takes many minutes for me to win. I say win rather than persuade because I’m not always sure I persuade. Sometimes I think I merely wear her out. Other times I win in one sentence. I tell her: “I love you.” If she believes me — and she usually does — she says, “Oh, thank God,” in a voice filled with emotion.”
I need to practice that reassurance for those I love.
It’s coming up on two years that Marv has been gone. I find it so incredible. I’ve been involved in some caregiver support groups and somehow I think that may help me as well as others. After all, who better to give advice and support than someone who has been through the war?
Lately I have been reminiscing about wacky things that happened. One of my favorites was trying to take Marv to see the Christmas lights out in Ucon, Idaho. They are over the top with lights and tuning into the radio station for the music that corresponds with the light show. Robin and Tom wanted to help with the adventure and so we all tried to get into Tom’s truck for the drive out. We three got in but Marv continued to walk around the truck and try to get in the driver’s side. When he found Tom there he had a surprised look on his face. Then he carried on around the truck and tried to get in the passenger seat where Robin sat, always avoiding coming to the door I had open and coaxing him to get in. Off again he went around the truck to the driver door so Tom jumped out and tried to herd him to the right place to get in. Mistake, as now the driver seat was empty and ready for Marv to head directly. Tom headed him off to make another round of the truck. Oh how we laughed when we finally were able to get him in and situated to head out and see the glorious lights.
Sweet how now I can remember and giggle at some of the things that made us laugh and made life bearable amidst the difficult time of Days in Dementiaville..
Sami’s birthday party almost two years ago.
How odd to think two years ago things were so different.
You were in a wheel chair and not talking but you still enjoyed the cake and the action packed birthday party place.
We were so lucky.
You are still missed.
September 1935-January 2015
Marv now in the nursing home. Just some photos so we can see how he progresses.
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.
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.
Today I got Marv and brought him to the little apartment to see Sweetpea. He was sooooo tired when we got here so I put him in my bed and he was so comfy and glad to go to sleep. Beamer laid on his feet and I laid down by him. Sweetpea came and got
on my side and Marv wiggled his fingers at her to say hi. He slept for at least an
hour and 1/2 and I slept maybe 20 minutes. But I laid there by him and was happy
all four of us could be together and comfortable for a while. Not your traditional
Christmas Day but I liked it.
I hope you all could have a nice, sweet day as well.