My wife/caregiver, Karen, has had bronchitis for just over a week and is finally starting to improve. This is amazing on so many fronts considering the meds she takes for her RA leave her immunocompromised. Usually, getting over an infection such as this would take her the better part of a month, if not a hospital stay. At this point, the bronchitis has completed it's course. Now, she's primarily just weak and left with a hollow, sometimes spasmatic cough.
It was with this background that day before yesterday unfolded.
Karen was finally able to spend the majority of the day upright and conversing. It was at this point she noticed my feet which were swollen so that I could barely tie my shoes, ankles were a thing of the past, I couldn't even feel my ankles if I pressed hard enough over them to leave a depression. Over the past week and a half to two weeks I had gained 25-30 lbs. and developed this swelling. It included my lower legs and hands. She had noticed this earlier in the week but was too sick to be very concerned about it. And, as I was having no chest pain, shortness of breath, exertional fatigue, no urinary symptoms... nothing, I wasn't all that concerned either. I figured it was one of my meds or some such causing all the problems. Now that she had improved, was thinking clearer, and saw the swelling again, she was all up in arms and determined I see someone about it. And she proceeded to make the call to my PCP's office to arrange for an appointment the next morning. She then called my dentist to reschedule an appointment I had at the same time as the appointment with my PCP the next morning. And then yesterday, she drug herself out of the house and took me to the doctor even though she did not feel like it. She did all this even though, that while better, she was still very weak and went into coughing fits if she spoke at any length and I was in no shape cognitively to do so myself. She selflessly placed my wellbeing above hers.
Thus is the life of the full time caregiver for a dementia patient. You are never on vacation, you rarely get time to or for yourself, you have little time to take care of yourself. You are responsible for an adult who is rapidly reverting to childhood and is often combative, unappreciative, abusive, and frustrating. And you do so without complaint even though you never signed up for anything like this and it is completely destroying the future you and your LO had always planned for.
Fortunately, I am the recipient of this all inclusive, self sacrificing love. I don't deserve it, I haven't always been the perfect husband and doubt I ever will be. And if I had a dozen lifetimes I would never be able to repay all that Karen has done and is doing for me. And it hurts my soul that despite all that I have put her through to this point, this is but the tip of the ice berg of what is to come. I sometimes weep at what I am putting her and the rest of my immediate family through, however unintentionally.
If you have such a saint in your life, treasure them, let them know how you feel about them, encourage them to take time for themselves, to continue to have some sort of life outside of the scourge of dementia. And let them know you know they are doing their utmost best with the situation at hand. And please let them know they should not blame themselves for any shortcomings they may have in caring for you. It's only natural that they may become irritable from time to time, that they may be short tempered, or that they will most likely be extremely frustrated the majority of the time. Theirs is an unrelenting, thankless task. And don't forget they are basically grieving our loss while trying to care for the shell that once was us all the while knowing that grieving process will again occur after our passing. Just love them while you can.
Take care,
Randy
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Dementia and CTE....great 44th birthday present. 