He was scheduled for an MRI at 1:30. The doctor gave us a valium to give him prior to the procedure. Part of the procedure is that one lies on a plank, head in a container and stillness is critical. I knew that would be a problem due to his constant talking, wiggling, patting, drumming and whatever else strikes him at the time.
I gave him the Valium before we left home and as we drove to the office, I watched him starting to slide down the seat. We arrived at the office and I managed to get him out of the car....painfully slow and always at risk of him falling asleep. After checking in, the nurse told us we needed to get back in the car and drive through the parking lot to the mobile trailer. Really?
I got him back in the car after quite a struggle. We drove to the mobile trailer, parked and then started the struggle of getting him out of the car and up the steps (about 8) and into the trailer. It was like assisting a drunk person trying to walk. All his weight was on me. As we got to the top step, the technician came out and said that he did not have a waiting room and that we needed to wait outside. He helped me get Gary safely back down the steps and I tried to walk him around the parking lot. He walked like Tim Conway when he played the old man on the Carol Burnett Show. The only difference was the reality of the moment.
I put him back in the car and waited. He was groggy. After 20 minutes, the technician came out and helped get him to the lift on the side of the trailer. He was quite helpful.
The near hour long procedure was performed with Gary taped to the board. I was allowed to touch his legs and arms as necessary. He fell asleep and started snoring so of course, that was forbidden movement. He got cold at one point and crossed his arms. He crossed his legs. He has a horrible cough and moved a tremendous amount.
When done, the technician said that he thought the tests were okay but borderline due to the movement. He assisted in getting Gary back in the car and he slept most of the way home.
Upon returning home, he slept most of the afternoon. I had some quiet hours. It was precious.
There are many feelings associated with losing a loved one to dementia. He is still here physically and mentally, there is a person there, but not necessarily my Gary. It is some other form of a man. He doesn't think like him, nor act like him but he still knows my touch and tells me he loves me.
I feel anger. Remorse. Anger. Pain. Grief. Anxiety. Frustration. Love. Did I mention Anger? Questioning. Rage.
I had my own frustrations this week. I ended up skipping a Nursing Pinning Ceremony and went to Urgent Care with a piercing pain in my side. They referred me to the ER for a CT scan. Diverticulitis was the diagnosis. I managed to get the prescriptions filled and am on heavy doses of antibiotics and am not needing the pain pills.
This too will pass and life will go on. While sitting hooked to an IV in the ER, it would have been nice to have my husband beside me or at least available by phone. There was no point in even trying as he is just clueless to the emotion of others. He still laughs and gets frustrated...the only way I can describe him is disconnected and distant.
What is next? Only God knows.
Ada: I feel so sad for you. I can relate to what you're going through. I was responsible for three older siblings in Ireland for over 30 years. One is still alive at 87. He is in a nursing home and has an incurable brain tumor and is not expected to live more than a few months.
ReplyDeleteThe brother who died in 2011 was mentally ill and, while it wasn't quite the same thing as dementia, it was similar in the sense that he was totally unpredictable. He had a breakdown in 1984 and gave away almost everything he owned, having become convinced that he couldn't go to Heaven if he had anything. I had to help him financially for years until he was moved to a nursing home at 84 in 2004. (Other family members helped financially too.) At least there was some advantage in the fact that his only income was his old age pension, because that covered the cost of the nursing home.
I was blessed because the caregiver lived nextdoor to the two brothers and my sister. She and I worked together to make sure they were taken care of. She is an amazing woman and did more than I could ever pay her for.
While the brother who was mentally ill was alive, I dreaded checking the phone in the morning, as I never knew what crazy thing he might have done. Because of the eight-hour time difference, calls usually came in the middle of the night. The phone didn't ring in my bedroom, because I was working and had to get some sleep. The caregiver would usually take care of whatever the problem was, but would let me know what was going on. I was always worried that my brother would wander off and would fall (or jump) off the cliffs near where he lived. He had made one suicide attempt when he was first diagnosed. The caregiver used to watch him and, on at least one occasion, had to follow him and bring him home. He had driven to the cliffs and was wandering around in nothing but a shirt and pants, although it was winter and the weather was freezing. She got him admitted to the local psychiatric hospital the next day, and he was calm for a while after he was released, but stopped taking his medication and started to exhibit bizarre behavior again before too long. It was such a relief when he was admitted to the nursing home where he stayed for 6 1/2 years until he died.
The brother who is ill at the moment was much easier to care for. He cooperated with the caregiver and his doctor and was very frugal when it came to money. My sister died in 1997 and another brother died in this country in November 2015. I was the youngest of seven and am about to be the only surviving member of the family.
I'm wondering if there is a support group for caregivers in your area that you could join. We have one here at the senior community where I live, and it at least gives caregivers the opportunity to share their frustration and get input from others in the same situation. It's just a thought - you need to remain strong to deal with your husband's illness and maintain your own health. You might also be able to have Gary admitted to a nursing home for a respite period and Medicare might pay for it. It's worth looking into - it would give you a chance to recharge your batteries.
Good luck and know that many of us who read your blog can relate to the difficult job you have in caring for your husband. Life sometimes isn't fair, but at the end there is the satisfaction of knowing we did our best to care for our loved ones, even though it was the most stressful and frustrating job we ever had to do.
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