Wednesday, March 31, 2010

Day 28- Two-Stepping

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.

Thursday, March 11, 2010

Day 8; Finding Meaning & Purpose

In Viktor Frankel's 1946 book Man's Search for Meaning he chronicles his experiences as a concentration camp inmate and describes his psychotherapeutic method of finding a reason to live.

After eight days of 24 hour care for my mother-in-law, I have drawn the conclusion that there are many similarities to Viktor Frankel's experience and what my MIL must feel. She is searching to find meaning and purpose in a life that can no longer afford her the freedom of decision making and socialization that she once loved. With the state of her current mental capacity the daily living dilemmas about what to wear, putting on make-up, and bathing are difficult tasks that require concentration and supervision by others to keep her on task.

As a former career counselor, I understand how working impacts so many aspects of our well being, self esteem, and feelings of self worth. Finding something we love to do and are good at gives us purpose and meaning in life. For my MIL, she wants purpose and meaning but is limited in her ability to do certain things that once were very easy for her. Therefore, we look for things each day to give her to "do". Her lack of having things to do as we saw when she was in the assisted living facility definitely played a role in her not so positive outlook on life.

In the last eight days of staying in our home, we have seen her exhibit a much improved outlook on life. She walked with us on an indoor track, has attended a 2nd grade school program, attended her granddaughters track meet,pulled weeds in the yard (definitely did not ask her to do this!), offers repeatedly to clean, wash dishes, and do laundry. These little things have given her purpose in a life that was lacking meaning and purpose.

It has been fun to watch her look "forward" to things she had once given up on ever enjoying again. But, I am running out of things to give her to do!

Thus the question, could she volunteer or help others to get her out of the house in a safe environment and by giving back she would experience a boost to her self worth? We'll see.

Wednesday, March 10, 2010

Do you need me to do anything today?

Yesterday, I think I mentioned the test for the day was to see if my mother-in-law could follow directions/remember the directions if we left it for her in writing. Well, I am happy to report that she dusted the wood blinds for me and they looked great. She even took all the clothes laying in the floor of my 18 year old daughters room and washed them---some of which were clean but hadn't been put up. That's okay she feels she has purpose and can help out!

Last night we went to a school program for the 8 year old that my daughter baby-sits. My mother-in-law went with us and seemed to thoroughly enjoy the singing and dancing by the kids.

She did get a little anxious about getting ready and kept asking my daughter what to wear. I know these decisions are very ominous for her but she did great---she picked out a black casual valour pants & top and had on a pair of black shoes with hose. Then she got a little anxious one other time when she & I sat down but because it was so crowded my husband and daughter stood up. She worried about them not sitting down several different times throughout the program.

I have been pleasantly surprised that she can still be very active physically and with guidance she can still accomplish tasks if she has prompts.

The phrase for the day: Do you need me to do anything today? She asks every morning to leave her some things to do so she won't be bored----she asks to iron, do laundry, mend any clothes, etc. Today we asked that she rest!

Tuesday, March 9, 2010

Dude, Where's My Car?

Well, I haven't posted anything in a while. Not a whole lot of new information other than on March 3, 2010 we moved my mother-in-law into our home. As I mentioned before, she was diagnosed two years ago with Frontotemporal Dementia. According to the Mayo Clinic, it is defined as:
Frontotemporal dementia (frontotemporal lobar degeneration) is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain — the areas generally associated with personality, behavior and language.

In frontal temporal dementia, portions of these lobes atrophy, or shrink. Signs and symptoms vary, depending upon the portion of the brain affected. Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally blunted, while others lose the ability to use and understand language.

Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer's disease. But frontotemporal dementia tends to occur at a younger age than does Alzheimer's disease, typically between the ages of 40 and 70.


She has probably suffered from this disease since she was in her 50's but her symptoms were mistaken for early signs of Alzheimer's which her mother had. Had someone only known!

As I mentioned, she moved into our home last week and the challenges are many. But, the good side of all of this is that it allows us to really get a feel for her condition. The difficult part of the disease is that you have a person who physically can do many things but mentally can not remember things from one second to the next.

Today we will test her ability to follow directions if you write it down for her. She wants to help around the house which she is still capable of doing but because she can't remember directions verbally we thought we would write it down for her and see if she can complete the task. One task she has mastered is taking clothes out of the dryer and folding them. It is reminiscent of Pavlov's classical conditioning experiment where you ring a bell and the dog knows its time to eat. In this situation the dryer buzzer goes off and she knows she needs to get the clothes out and fold them.

But the one challenge we have not mastered yet is how to deal with her obsession wth her car. She continually asks where her car is......thus, the question of the day is....."Dude, where's my car?"