This is a question that came out of the blue! It totally caught me off guard. It was incredibly sad for me as it represented a worsening of confusion. Jim's mother developed dementia in her 60's. Together, Jim and I provided care for her, and she was able to stay in her own home up until a couple of months prior to her death, following a major stroke. We had hired help during the day while we were working, and after work, Jim and I took turns spending late afternoon and into the evening with his mom. He took such good care of his mom! He was always patient, loving, caring and always wanted the best for her.
She died in 1999. When I answered his question about whether she was still alive, he accepted it, was sad, and then moved onto a different topic. It almost was like he was trying to sort out things in his mind.
Jim's level of confusion seems to have worsened over the last week. We've had daily, multiple conversations regarding where we live, what our house looks like, what cars we own, on and on. Fortunately I have pictures of the exterior of our house, as well as a couple of good pictures of our great room.
He's not been upset about it, just very confused. Within minutes of reviewing where we live and showing the pictures, he asks again, and again, and again. It's incredibly sad to see this loss. The only saving grace about this is that it has not caused him to be angry or upset, just confused.
I have all the patience in the world! I'm not kidding. To me, this is the easy part of helping Jim with his dementia. I am a patient person by nature. And it feels good to be able to offer some reassuring, orienting information that hopefully helps him through the moment.
This morning when he woke up, he said "I've got to get going; I've got to get to work!" He was visibly relieved when I told him he was retired. He wanted to know more details, (when? from where?), and was very happy that he didn't have to go to work.
Regarding practical matters, I'm continuing to learn work arounds, as I face the challenges of Jim's decline. Lately when he makes a sandwich, he takes the knife from the chicken salad and then places it in the mayonnaise. I've thrown out a couple of jars of contaminated mayonnaise over the last week or so. It is not helpful to remind him; he will not retain that information and I risk upsetting him by the reminder ("I know that! You don't have to say that!"). So my work around is to buy mayonnaise in the squeeze bottles. No possible risk of cross contamination, and it is pretty easy to use.
Laundry is abundant! Jim has several changes of clothes as he gets ready for the day. All of the changes end up in the laundry. So the white polo shirt he put on for 5 minutes, and then took it off to put on a t-shirt, ends up in the laundry. He sweats profusely during this time period, indicating to me how stressful it is to find just the right clothes to wear for the day. I feel so bad for him. My attempts to help him pick out clothing appropriate for the weather/situation generally are not helpful for him. So, I've learned to just let him struggle through this, rather than try to help. My attempts to help just seem to add more stress.
Jim's sudden worsening of his dementia symptoms makes me wonder if there is perhaps a vascular dementia component. He was diagnosed with hypertension and high cholesterol many, many years ago (his dad died of heart disease when Jim was only 20). He was not properly treated for his hypertension, high cholesterol until he came under the care of Dr. C. So vascular dementia is certainly a possibility. In addition, he was a smoker. He finally quit, after struggling for many, many years with unsuccessful attempts to quit.
None of this really matters of course. It is more of a clinical curiosity and represents my need to understand what is happening.
Jim asked today (several times) if we could go check out his car. Each time I responded that his car was 1200 miles away, and that we had decided to wait until winter was over before heading home. Each time, he accepted this explanation.
And so, another week has passed, and unfortunately I am witness to another significant decline. I am so looking forward to going home. My plan is something that helps me to stay strong. I know that the support groups are going to be a big part of my survival in the future.
I have to give a shout out to Jabberwalky, who has been an incredible support to me, both through her blog and through our correspondence. She is the one who helped me to understand that once you have accepted your role as caregiver, things get a bit easier (it is never easy, of course). In other words rather than trying to fit caregiving into your life, you recognize that caregiving is your life. Once you have accepted that, everything else seems to fall into place and flows just a bit easier.
Writing this blog is so therapeutic for me. But I also hope that others who may be traveling this sad journey of dementia will find some support as well as camaraderie. Thanks for listening, and as always, I so appreciate each one of you.