It has been twenty-eight days since we moved my MIL into our home. It has been up and down for most of those days. Some of the "ups" have been spending time with her and seeing with our own eyes what this disease has done to her. The good news is that she has physically been able to do the things that most people her age could do----she has gone to track meets to watch her granddaughter run, has walked with her family, gone shopping, had family dinners and watched movies, and seems to be more like her old self than when we saw her three years ago in the hospital because she had taken her medicines wrong and we almost lost her.
The downs---well, the downs are there too. This is the hard part. With a disease like FTD or alzheimers you don't always know where your loved one is in regards to the stages and what level of care they need. This has been our challenge. Doctors have told us she needs assisted living; assisted living centers tell us she needs more help and move her to the side with more "assistance"; then you see that becoming a challenge so getting to observe first hand has been very helpful as we decide what is the next step in her level of care.
The first few weeks was very challenging for our entire family and my MIL. She reverted back to the times she came to our home to visit. In her mind she was there for a weekend stay and by the second or third day she kept asking where her car was because it was time to go back home. Where she slept was very difficult, she would go to the bathroom at night and end up sleeping in my oldest daughters room---she is away at college. Each night we would explain to her where she slept---a room specifically set up for her. Each morning she would come out of my daughters room. It's just been in the last two weeks that she is now sleeping in her room.
Dogs, dogs, and more dogs. In her previous life, she loved dogs and always had at least two or three living in her home. We have one dachshund and my daughter has two dachshunds that are with her at college. When my daughter came home for spring break she brought her two dogs. It really confused my MIL and she kept asking us whose dog is this or where did this dog come from. But she really enjoyed holding Gunner, the puppy, and it seemed to be an escape for her not to have to worry that the dog knew something was wrong with her.
I mentioned in the title of this blog "two-stepping" because as my husband said we have to stay two steps ahead of her because she doesn't know what she does. We have had to modify our home by changing thermostats so she can't move it up or down and leave it running----she did this one day and moved it to 90 degrees--it was so hot in the house that it burned your eyes when you walked in. We turn the gas off to the stove everyday because she two burners on and left them on until my daughter came home and found it---she was doing this in her own home. We have turned the water off to the washing machine because she obsesses about washing clothes. It would be a great help but she doesn't put laundry detergent in or washing things that don't go together, etc.
The hardest part in this whole journey is watching my husband. He is so sad that he has to see his mom like this. Every day is a reminder of how quickly the disease is taking over and that he will never really have a relationship with his mom like he used to. He goes through cycles similar to those that a manic depressive person goes through---manic when with have our "up" days and his mom is "normal" and depressive when we have our "down" days and he is trying to stay two steps in front of his mom.
Where we go from here is still to be determined. We have noticed triggers that seem to send her off in bouts of resistance where she wants to run. Anytime she talks to someone she seems to be reminded of the little things that she doesn't know or can't remember from her past. Her stunning question to my husband after a day of trying to talk to her about her condition was, does everyone know that I am like this? How can you answer that question without feeling horrible!! We have gone from honesty is the best policy to act like nothing is wrong because she won't remember what you talk about anyway.
Life is good..........challenging....but good.
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