Dementia How Do You Live With It?

I drove 12 hours straight praying and crying the whole way. After getting a phone call from my brother that Mom was in the hospital. I called the hospital and I didn’t like what I heard. I threw some cloths in a bag kissed my husband and made a mad dash across three states to get to my Mom. What I found left me without words. It wasn’t just that she was incredibly sick with pneumonia but she had somehow changed.
Mom loved knitting, crossword books of any kind and she was really good at them, reading has always been the love of her life. She would read 4 to 5 books a week. It was her dream when she retired to do nothing except read, knit, puzzle, and travel. For a very long time she was living her dream. We all looked forward to the dish cloths she knitted all year-long and gave us for Christmas. I still have a drawer full of them that I use all the time. She traveled in all four directions visiting family and friends, she had more book cases full of already read books than any other furniture. Mom wasn’t the best house keeper she had pride in her home and did her best to keep it neat. Conversation was something else she enjoyed, talking about just about anything made her happy.
None of that was evident when I got to her. I saw her home first before I saw her and knew as I walked through room after room of debris, mold, and human waste that she would not be coming back to her home. Besides the mess I was witnessing I was also noticing there were no dish cloths, none, no knitting stuff near her chair at all. The same with books and puzzle books there weren’t enough books around her chair and the puzzle book that was sitting there was open to a puzzle that was only half-finished and all wrong. I walked out her house feeling sad and totally confused. When I finally reached my Mom’s side I was completely floored, it was like someone had knocked all the air out of me. The tiny little figure laying in the hospital bed did not resemble Mom at all. First and for most she was filthy that was not like Mom. I asked the staff when they had bathed her and was stunned to hear that in the 8 days she had been there she had not been cleaned not even a wash cloth to her face. On my next visit I brought a book for her and some knitting stuff as well. I quickly learned she no longer knew how to knit and her reading skills where quickly slipping away. I asked questions of everyone I could think of from the medical staff to her family doctor and no one could tell me how long this had been going on or if it was permanent. It seems the on set of dementia is very subtle and only a diligent doctor would notice the changes to his patient immediately.The pneumonia enhanced the effects of the dementia and they weren’t sure what the future would hold. Mom had a very hard time communicating at this point let alone holding a conversation. For the most part she would just sit and stare at her visitors smiling at them now and again. After taking it all in it was clear to me Mom could no longer live alone.
It took me two days of some extremely difficult traveling to get Mom home. Her family came together and helped get her house emptied and disposed of the best they could. 3 weeks after arriving in MI I packed Mom’s cloths, her favorite collections, and family pictures into my car and we were on our way. I needed to stop often and get her up and moving. This was so hard for both of us. She was barely able to put one foot in front of the other and would be tired after just a few steps. I panicked a few times thinking I would never get her back to the car, some how I always did.
Dementia how do you deal with on a daily basis? I have no idea. Every day is different and your emotions are on a roller coaster ride that seems like it will never end. There are times when I just feel like crying and times when I do just cry other times I am just so angry, angry at her angry at me angry at the world. Why should I have to deal with this? It is a question I ask myself from time to time and it is the question that makes me the angriest. It is such a self-pitying question and no one made me take on this challenge I volunteered for it. It is such a useless and pointless question yet I still ask it from time to time. Not every day brings anger or sadness there are days of happiness and peace.Days when you just can’t help but smile and be happy.
It was a real struggle in the beginning, Mom and I love one another but we aren’t Mother and Daughter best friends. Mom was use to living by herself and living as she pleased. That changed when she came here I am now the parent and I make the rules. As soon as we got home I got medical help for Mom and questions answered for me. I learned that the pneumonia speeds up the effects of dementia and that with a little physical therapy and some mind exercises I could may be slow this ugly disease down. It was a long shot but we took the chance. We started with my granddaughters books to get her reading again. I sat for hours showing her how to knit again and encouraged her to knit even if she was making nothing. Word Search puzzles are simple and easy and make her puzzle loving self happy. Physical therapy began 3 times a week. At first Mom resisted everything we were doing, she yelled at us threw things at us and at times just flat-out refused to do what we were asking. She wanted nothing more than to go home and be left alone. To this day Mom hates following the rules. The rules aren’t to be mean but to protect, keeping Mom healthy and safe. Without the rules she wouldn’t remember to eat or eat too many times, bed time would be a thing of the past, being clean and other important things like exercise wouldn’t happen. So we struggled for a while finally settling into a routine that works for the both of us. We still have days that are a struggle just not as many.
As the days go by I watch helplessly as this awful disease slowly takes away the woman I knew and leaves a total stranger in her place. The changes have been subtle but there none the less. The bad days are when she is herself her mind is working clearly. Those are the really bad days because she is so angry. Angry that she can’t live alone in her own home. Angry that she is slowly losing her memory and so angry that it was me that took her home. I don’t take that personally I know it wouldn’t matter which one of her children took her home she would be angry at them too. Anger seems to be a big part of dementia.
There really is no dealing with dementia, no matter how you fight it, it is going to win, but before it does win it will inflict as much emotional pain as possible on you the care giver along with the one your caring for. I have had this awful disease slap me more than once. I cry the hardest when Mom looks at me with a lost look in her eyes and asks Who are you? It has only happened a few times but it is a peek into the future I would rather not have. Mom has been with me almost 3 years now and she went from kids books to adult books and was reading 2 or 3 a week. Knitting scarves managing to play with different stitches, she even managed a few easy crossword puzzles. I was beginning to have hope and think that maybe just maybe everyone was wrong and Mom wouldn’t slowly slip into a darkness she can’t escape. That little high only lasted a minute before dementia stepped in and took another big bite out of her mind and sent her back 3 steps. She is still doing her activities just not as well as she was a few months ago. I was getting use to her not remembering the day before it is after all the most common effect of Dementia, kind of where it starts, but now she may not remember an hour earlier and her past life is beginning fade away too. She remembers her teens and childhood well but is fuzzy about her adult life. She has forgotten her children’s birthdays or sometimes she just gets them confused. Her knitting took a big hit and she unravels more than she knits and now it takes a week or two for her to finish a book. By asking questions about the book I know she still understands what she reads. What is taking so long to read a book is she forgets where she left off and re reads pages over and over again.
Like I said every day is different but a few things stay the same, Mom can’t be left alone for a single minute. Two very scary falls taught me that. And every day is going to have its challenges. While Mom finds peace and contentment reading her books, knitting and un-knitting a ball of yarn, and playing with the dogs, I find my own contentment writing blogs and taking pictures when ever I can. Mom enjoys picture days too, it means we will be out riding around most of the day looking at all kinds of different things and having lunch together at one diner or another. Picture days are good days for us both.