As the month of July quickly draws to an end I am again caught in one of those paradoxes which so often stymie me. I am dreading my girls all heading back to college yet I cannot wait to have the house to myself! Having three of my girls at home has been exhausting because there is so much that I want to be able to do in the short time we have together. I have chosen often to enjoy doing things that I know will leave me unable to function the next day which is well worth the pain until the pain decides to stick around for and extended stay. So then I am faced with the need to spend time with Dick but lack the stamina or desire to put up with nursing home visits.
After staying in bed much of the day yesterday I decided the only thing to do was to bring Dick home to spend time with me. I had missed a couple of days visiting and figured he would be rather upset with that so before I gave him a chance to grumble, I marched in and asked if he was ready for a sleep over. My plan was well executed and all his negatives were instantly turned into enthusiastic joy. Within minutes we had him ready to go and only needed an aide to change him before heading out the door. That took about a half hour! She wandered back and forth getting one thing then leaving for another thing until I had left the room to take stuff to the car. When I came back in it was to find her telling the head nurse that Dick had refused to be changed. I was rather surprised because I knew he was anxious to leave. I told the aide that I still wanted the job done and when we arrived back in his room, Dick had all the stuff laid out waiting to be changed. So much for her line that he had refused!!! GRRRRRRR!
I had sent my youngest to the grocery store for a couple of items including steak. I wanted to fix something for Dick on my new grill because he always enjoyed grilled foods. Since he mainly survives on peanut butter and jelly sandwiches in the nursing home, I was tempted to get him a cheaper cut of meat since it seems most of the time his taste buds no longer distinguish subtle flavor differences. Fortunately I decided it would be easier for my daughter to only have to choose one type of steak so rib eye was on the menu. I threw together a pineapple casserole which I usually have on holidays because it was simple and added some veggies that my daughter cooked. I did not feel up to much time cooking and I certainly did not expect Dick to care.
So I was ecstatic with response that I got from Dick. He raved about the steak (in truth it did turn out as good as he used to make them) and complemented me on the casserole. He even ate the vegetables (something I don’t think he has done in over a year)! I could tell that he had truly been able to taste and appreciate what he had been served. To top that meal off, he had said the blessing beforehand. I am not much for memorized prayers but Dick always said one before meals which always had moved me. Before he went into the nursing facility he often had to be prompted with that prayer and I have had to do it for him for the past year. I don’t suppose many people would have understood his words but he did have them all right on this occasion. I so often wonder just what kind of faulty wiring is left in his brain. It’s like the connecting wires have broken but every once in a while the ends swing against each other and for a moment the old connections fire.
Not all the connections were working of course and when I told my mother about it today we had to laugh at some of the scenes from yesterday. I had placed Dick on the sofa in the living room to wait while I cooked. He has become less and less able to walk over the last few months but he was able to manage to find his way into the kitchen. One of my girls was sitting at the table talking as I work and I suddenly heard a disappointed tone say, “Oh I was trying to save them.” Dick had found some pretzels on the table and helped himself. Since they were hers I simply took the bag away and explained that they needed to be put away. Imagine if you can a two year old helping himself to a snack and you get an idea of the scene! Next he rummaged through the refrigerator and found some Swiss cheese and I told him not, dinner was in about ten minutes. He accepted that but tried next the pepper jack cheese and I basically said he couldn’t have any because it would spoil his appetite. Two seconds later he pulled out two slices of American cheese! I told him to put them back and would you believe he tried to sneak one?!! Finally I had four thin slices of apple which were left over from the desert which I let him have and he clutched them in his hand just like a contented toddler who thought he could not hold out for those now five minutes till dinner!!
One of the most difficult jobs of caring for Dick is his incontinence. I was most delighted therefore at how well that went for us. I simply ushered him into the bathroom every four hours and we ended up with no accidents. So for the life of me I do not understand why he spends so much of his life in a puddle. It seems to me that taking him to the bathroom is so much easier. This is one of my biggest concerns at the home.
I don’t know how many people who have not had to move their spouse out of their bed can understand just how nice it was to have him to sleep with me last night. He had been moved into a hospital bed a year before moving into the nursing home. When he was home full-time both he and I needed to have it that way. But for one night I could add absorbable pads enough not to have to worry about the bedding. I don’t believe either of us slept all that well because I was aware of him holding my hand or resting his hand on me all night long. A little thing you may think but it was HUGE to me.
This morning we enjoyed a simple breakfast at the table. Understand that I never bother sitting at the table when I am alone. But in the past breakfast was one of our favorite times of the day drawing the minutes out over our cups of coffee. When caring for Dick daily things like his cup of coffee being spilt frustrated me so much that I no longer enjoyed eating together. Now that I don’t have to deal with it regularly it was not a problem to wipe up the mess and pour another cup.
I took advantage of him being home to go ahead and cut his hair. That followed a full scrub down so he was looking his best by the time we had to leave. He was not excited about returning to the nursing home but he accepted it. He was rather glowing as we returned and the staff and even a couple of the residence commented on how good he looked. I had a doctor’s appointment so had to leave right away. Still he was content.
So no, to and outside observer there was nothing particularly spectacular about our little sleep over but to Dick and I it meant a lot. We were able to spend time together and I still was able to take it easy. I’m just so thankful that we were able to do it.
My doctor today again encouraged me to talk to a surgeon but I draw the line there. She is ordering a tens unit and some new prescriptions. We are trying to find where I can continue my physical therapy where my new insurance is accepted. And yes, having Dick home made things worse but it is a trade off I would make again.
I’m still trying to get with the state ombudsman who has been on vacation. I still have many issues which need to be resolved with the nursing facility. I have even considered what other resource I may be able to use should I choose to bring him home. I am wondering if it is possible to put him in day care with home health aides to help again with bathing, laundry and some of the other heavy lifting jobs. Still, if Dick becomes aggressive again there is nothing I will be able to do with him. And I must face the fact that he will continue to get worse as the dementia progresses. I just wish I could have him in a facility where I could trust that his basic needs were being cared for since I will not likely be getting much stronger myself.
Like my feelings with my girls. I want Dick home yet I dread the thought of all it would do to me. I go back and forth in my mind trying hard to accept what is instead of trying to recreate what was. Maybe having that little taste will allow me to return to the necessary arrangements as contentedly as Dick did.