The above picture was taken a few months ago as I visited my parents. My mom was shaving my dad. I asked her if she felt comfortable with me sharing this picture and some of our Alzheimer's story and she agreed. I was hesitant to write this. My dad has always been a hardworking man and it is sad to see him in the state he is now. I didn't want to disrespect him by sharing how this disease has affected him. But, it is a story that must be shared, in hopes of having others understand perhaps how to help out and love those like my mom and dad. ( or even my mom and dad if readers know them)
My Grandma Spriggs, my dad's mom, suffered from dementia. She lived with us for some of my teenage years until she was placed in a nursing home. I remember changing her diaper and her doing things like pouring orange juice into the milk and stories that she felt were true that were scary imaginations. My mom cared for my grandma a lot. It was hard for her and she will say at that time she thought some of the things my grandma did was simply to spite her. My grandma suffered with dementia for several years, at that time I don't think it was given the Alzheimer's name, but it may have been. When my grandma passed on, I'm sure my dad may have been a little sad, but probably not a lot. I recall him saying that he had already said good bye to her years before.
So, my dad, having seen his mom in such a state, never wanted to be in a similar position. As he started to exhibit some of the initial signs of Alzheimer's it was scary to him. He didn't want to become like that. That is a tough place to be in. You are still cognitive enough to know that things aren't right, but you can't fix them or change them in the way you want. It's like you see your nightmare rushing towards you, but you can't stop it. Things become more and more confusing. At the beginning ( and even later, too, I think) as he was aware that he was losing his cognitive skills,-there is a certain amount of faking. He may have run into someone in the store and knew he should have known them and was maybe able to muddle through a conversation with them, all the time wondering who they were and what his connection to them was.
For awhile my dad was able to do the majority of the things that he had been doing. He worked some and still drove to neighborhood places. Eventually my dad wasn't able to continue either tasks. He wasn't able to follow through on his job demands and although it was hard, slowly my mom decided that it was no longer safe for him or others around him to drive. I think that was hard for my mom- how do you take away the simple pleasure of driving privileges from your husband ? He was still able to do many other things .
For my mom this was a transition period. Thankfully she had always been involved in family finances, but now she found herself having to make decisions that before her and dad would have made together. He was no longer able to understand the complexities of daily decisions and my mom, as she was losing, in part, the relationship she had had with my dad, and I'm sure that is a sad place to be, she was also having to take on more and more responsibilities.
Today, my dad needs help with the most basics of things. He needs to be told how to eat something- for example do you use your fingers or a spoon. At times he needs directed to use the bathroom and wears a diaper for the times when he doesn't make it. He wanders off. He might think I am his sister. He will ask if his mom has passed away.
As I have watched my mom and dad- there are some important things that I need to share. I know that I won't do justice to all the important things that need said in this blog post. So if you want to know more- please ask me.
- Give the caregiver love and support- My mom's world has gotten smaller as she has taken on the role of caregiver. A lot of people have given her advice- and I know I know how I feel when people give me advice about my relationships in areas they know nothing about! I know so many people mean well, but unless you are living in the situation- trust my mom to make the decisions that need to be made. Understand how totally time consuming and draining this is for her. My dad attends an adult day program 3 days a week now, and he has a "sitter" that comes into their home 2 days a week. You may think that this has made it so much easier for my mom- and yes it helps- but consider this- there are days when he doesn't attend day care because my mom just doesn't have the energy that is required to get my dad up and moving and dressed and ready to go. There are days that my dad has escaped from day care. It is not a lock down facility. As a concerned daughter I talked to my mom about this - and thought she made a good point. She said he looks for the opportunities that he can sneak out. She said he wouldn't be happy if he was locked in, and if this is the way he goes, then that is okay. True that we could extend a lot of people's lives by locking them in somewhere- but what kind of life is that. Nights are hard, I have stayed over some last year and I think one night was pretty restful, but there were other nights when my dad was up all through the night- agitated, wanting to pack for work and there are other nights, which my mom says are the hardest- when he just cries and cries. So on top of the daily stresses, my mom also doesn't have the chance to recover at night. My mom has helped so many people in her life- this is what I wish people would do for her.
** Bring a meal over, offer to help with something at the house, help her with her garden in the spring and summer! My mom loves her gardens! They help keep her sane! They are her respite, but also a lot of work.
- Don't ignore my dad!- My dad is "still there", he can still joke around and although he doesn't know what is going on- he often returns to this mantra- "I've had a good life" he will talk about the farm and the life that he has lived. I have found that at times I am even guilty of doing this- only asking my mom how he is and not talking to him when I call. I am trying to do much better, because I have found that he has happiness in moments. So those few minutes talking and connecting to someone are meaningful to him. When I call and ask to talk to my dad my mom has to instruct him how to use the phone: "don't touch anything, put it up to your ear". He is happy to chat- last time I talked to him he told me he had been picking rhubarb- I know it is January in Ohio and that he wasn't picking rhubarb, but it doesn't matter. I talk to him about the rhubarb I have in my freezer from the plant I got at their house. His core beliefs come through as he says " I always think it is good if you don't have to get all of your food from the store" Self sufficiency was always important to him. So call my mom, but then talk to my dad too! Don't expect him to know who you are, don't expect his words to always make sense, but tell him you are glad to be able to talk to him.
I'm sure there is more to write here, but I just want to end with a thought about the picture above. My dad lives in a land of confusion. There are times when he says he wants to go home, although they are already in the home they have lived in their whole marriage. One visit he was agitated and I believe he said "I don't know where I am or who I am". Yet through it all my mom is his safety spot. He wants to know where she is, he wants to be near her and he trusts her to take care of his needs. Love has stepped up.
And so it goes...