This last week my sister's husband had to have back surgery. He was in surgery for an hour and perhaps three hours in post-op, then was able to go home. But once home he was unable to pee and after some hours struggling with that, my sister took him to the ER for three more hours, then home with a catheter. All this week my sister has jumped at his every whim and been up and down with him at night due to his restlessness and discomfort. He doesn't do the things she tells him to such as eating fruit during the day and drinking fluids. Then when she gets home from work he complains he is hungry and tired and headachy even though she has left a lunch for him and left drinks with instruction to drink them. By the end of the week she was a wreck.
This is a fully functioning adult male without dementia. As my sister was complaining how she couldn't function from not sleeping well and she was at the end of her patience with him, it came to me all at once. How did I manage for so long? How many years did I deal with my husband alone through this ordeal that is AD without sleep, chastizing myself for my lack of patience when I would be short with him, and his relentless need for attention. While her husband is getting better each day and will soon be back to 100%, our people will continue to get worse and need more and more care. We all need to cut ourselves some slack and know that we are doing a great job and it is super hard. We are good soldiers.
So true..."knowing the journey can be very long." I recall when my dh was dx in 2007 officially by a neuro after having been seen by our family doctor off and on in 2006 for strange behavior and I began to read everything I could about this condition and I read where the average life span was 8 years and I thought... Wow how can I do this for 8 years. Now, here we are almost 6 years later and no end in sight (could change on a dime) and things just getting worse and worse with no improvement anticipated or expected. What a trip this is for all of us.
If I might have your permission, I would like to copy and forward your message to the leader of our ALZ support group. She is a great gal and this would be something she would take to heart and use in her work. You have said a mouth full and so graciously too. Let me know if it is ok with you.
Absolutely the hardest thing about all this is that dh will never get better. He has had many serious illnesses in the past almost 30 years because of Hodgkin lymphoma and the off shoots of chemo - staph infection, blood on his brain - that was eventually absorbed- heart attack/three stints surgery, shingles in his eye - requiring hospitalization, then began a series of mini strokes, etc., etc. but he always got better and returned to normal. Finally the stroke that took it's toll and now each day he just is more confused than the previous. Sometimes he talks to me about Earlene - that's me - like I was someone else. It's always been nice, so far ;) . I too, wonder how long , we are 79, and how long can I take care of him. Can't help looking ahead although well meaning son just keeps saying "one day at a time, mom" He is still functioning as far as caring for himself but he sure can't be left alone for very long at a time and he has no idea the time of year or even day of the week. He gets confused as to where we are going before we get more than a mile from home. So this is vascular dementia - until two years ago I had never heard of it. Only others at Joan's can understand.