Portrait of Minna and granddaughter Ellie – January 2019
Took the first photo at the supermarket. I WANT MY OLD LIFE BACK.
I drew the portrait of my granddaughter, Ellie, and me, after we visited my son and daughter in law’s home on December 25, from a photograph my husband took of us. I needed to draw something that brought back some light into my life, because…darkness has descended.
A lot has happened.
No more Ruth. The relationship is over and it ended badly. She said she couldn’t do it anymore. Said she would never see me again. For those of you who have been reading my blog, you know this is a great loss.
This was the woman who told me she would be my friend until the end. She’s a Jehovah’s Witness and said that the devil rules the world. And then she acted like the devil was inside of her. It happened on December 23rd. Two weeks ago. My functioning has gone way down. Without her friendship, I have felt like I’m in solitary confinement. She refuses to have anything to do with me, and it’s NOTHING that I did. She just said, she can’t do it anymore. How to move forward? It has been very hard. I shared so much with her. No one I can visit in this town. No where to go. No safe zone.
My dementia mentor said to be thankful for the 8 months she was my friend. Try not to go to the negative. Appreciate what she was able to do. But I am devastated every day and am very afraid. Now my husband has started to interview home health aides. Complete strangers. I don’t want to have to depend on a home health aide, but I may need to. I wanted a friend. I had one and now it’s over. I did not destroy this relationship. She did. She said she couldn’t do it anymore.
Her friendship was helping me to be more functional. Much more functional. I would walk to her apartment. I would never get lost when I had being with her in her apartment as a destination. I was so glad to have a friend I could visit. It felt so safe. I thought she understood. That she “got me”. That she had compassion for a poor soul who was stricken with early onset Alzheimer’s. But then I changed again and progressed in this horrible disease. The babbling started. Then she started complaining that using her walker to get here made her body hurt too much. That she can’t come over so much. That she would need to take Uber’s, which she did for a while. Then she got sicker. Macular degeneration, and her blood pressure went up. She didn’t feel comfortable coming here any longer, she said, and she didn’t want me to come to her apartment anymore. So now there’s much more pressure on my husband who is exhausted, often critical and when he can’t handle things, he has meltdowns. I am not able to be alone so much anymore (sometimes it’s hard for me to be alone for five minutes!), and he has limited capacity to be with me. How to avoid his having meltdowns, keep myself occupied, and not cause friction? I am extremely hurt. Abandonment is what has been happening to me over and over, since this disease started. Now this woman who promised to be my friend until the end, has abandoned me completely. She was cruel. She went from being the kindest and most compassionate, to being the coldest and cruelest.
People turn cold when dealing with Alzheimer’s. Spouses abandon their loved ones. Friends abandon friends. Why are people so cruel?
I know that everyone who has Alzheimer’s is different and declines differently and at different rates and speed. I know that the brain atrophies in this disease, and that is the reason for the changes. Two years ago I had mild cognitive impairment. It has progressed to full blown Alzheimer’s and progressed rapidly. I am scared. I know that I am dying. This is a new year, and I’ve been experiencing the changes that come with late moderate stage. Nonsensical speaking, talking to myself, great difficulty walking, I lumber along and often shuffle, difficulty chewing and swallowing. Now I have difficulty getting up from a seated position and often need help to stand up.
I try to think, but most thoughts are gone, the ability to think things through is gone. There is mainly emotion. And now I am devastated because the only friend I had will never see me again. The only relief is when I am asleep but I don’t sleep for over 5 hours, and often 3. The last time I had 7 or 8 hours sleep was over 3 years ago. I have prayed to G-d to take me, and then been so scared when it feels like I am actually dying. When it’s been hard to breathe, when tight bands constrict around my chest and I feel like I’m having a heart attack (this happened the other night in bed and I cried to G-d, “can’t you take me without causing pain?”.
I get scared. I’m gradually regressing to an infantile state of mind. Babies don’t think, they feel.
Finally did get up with my husband’s help today. No way around it, had to shower and wash my hair because I was dirty. Had to push through with whatever I have left. showered and washed my hair. A major victory. My husband had to sit in the bathroom with me. He needs breaks and went out and I managed to get the adult bib on and sat down to the breakfast he left for me. Ate slowly, chewed deliberately, swallowed carefully. My husband told me if I am going to be able to walk outside I will have to get moving. I dried my hair thoroughly with the hairdryer, put on my sweater and down coat. Managed to zip it and waited for him to take me out. (As I read these words- “waited for him to take me out”, I am dismayed that this is who I have become, that I need him to walk me, like a person would walk a dog). When we got back I asked him if he would sit with me as I did puzzles. Still have to do things to pass the time. Still have to get through each day. At this point, I can still do puzzles. Real physical puzzles made by Ravensberger, designed for little children ages 4+. I did each of these twice today. I completed both of them twice, pulling the finished parts closer together, and somehow fitting these together with the parts already done. I persevered. My husband sat next to me and did something on his computer. I can see that he will need to find activities for me in order to get any time for himself. As he sat there he ordered another Ravensberger 60 piece puzzle on his iPhone.
I was resilient until this disease took over. I could shrug off difficult things and recreate myself. If something didn’t work out, I would plan my way out of the quagmire. This was possible while I was still working. I had goals and was always very busy. Before I progressed. Once I had to retire from work and could no longer do the things I did independently, the feeling of futility and emptiness generated by a childhood that had me always looking for love, came back to haunt me. I became dependent, helpless and with an endless need for attention. Maturity guards against these feelings, and while I was living a worthwhile productive life and succeeding in my career, I thrived. If a relationship didn’t work out, there were other relationships. If a goal could not be attained, there were equally satisfying goals to go after. There were self help books, therapy, interesting new people to meet, ways to thrive. Now all of that is gone. Now there is Scrabble, drawing, crossword puzzles, television. The simplest things are hard to do. Dressing, going to the bathroom, getting out of bed and brushing my teeth. I am regressing to a state of infantilism, and I have been fighting this as much as possible. I am still fighting this unbeatable foe, but I’ve needed support. Ruth was my support. My encouragement. I needed that and now it is gone. I warned myself that I was becoming too dependent on her. Prescient.
Over the past few days I have noticed that I do not know where I am when I go out walking with my husband. After a certain distance, I am able to recognize landmarks, but can’t connect the dots and fear getting too far away from my house on my own. I have been going for walks with my husband. I haven’t dared to go further than a few blocks to the park when I’m alone. I remember being confident, dauntless and going everywhere myself. The last time I traveled alone was on the PATH train to get to the Rubin museum. That was around seven months ago. I still know the route, but do not have the ability to take public transportation alone anymore. I am now afraid. Very afraid. I have little stamina, and am getting weaker. Can’t even walk that far. I have no control over what is happening.
My husband took me for a walk downtown to see where the senior citizen center is located. It felt like a long walk, and I didn’t really know where I was. He was investigating whether they have any day services for peoples who have Alzheimer’s. They do have Bingo, and bus trips to the mall. But this isn’t a service for someone with a disability like Alzheimer’s. It’s for senior citizens who get bored and lonely, and need companionship and something fun to do, to break up their week, and give them opportunities to socialize. If I were there alone, I would panic and might start babbling nonsensically. People would think I was crazy. I am NOT crazy. I have a disabling disease that is causing major cognitive impairment. There are NO services in my community for people who have this disease.
I can imagine it is very hard to be friends with someone who is losing their mind. Hard to be friends with someone who one minute makes sense, and the next may be babbling incoherently. I have been advised to take the high road. To be thankful for the eight months that she offered her friendship, and opened the door to her apartment, and welcomed me in. Thought that since this is my blog, I have every right to spill out the details. But I see that no matter who it is, even the most noble person, does not want to give their life and time over to a disease that is robbing another persons life, changing their personality, their ability to function well by themselves, to speak and interact. No one wants this. There is no peace or joy in it. Yet I must express how sad I am. How losing this friendship has made me feel like I am in solitary confinement. No one to talk to all day, except my husband, when he willing, no socialization, no friends except for virtual friends on the computer Zoom chats with members of Dementia Alliance International and Dementia Mentors, and that is only for a couple of hours a week. These people are wonderful, but they also have their own garden variety dementia. Only one seems as progressed as me. Some have trouble following a conversation. Some have trouble walking too, and use walkers, but do not have much cognitive impairment, no memory loss. Lewy bodies, vascular dementia, and some with very mild Alzheimer’s, that doesn’t seem like Alzheimer’s to me at all. All of them are braver than me. I am Chicken Little with Alzheimer’s, and the sky keeps falling.
Her sister, Jeanne, still comes on Wednesdays. She returned my keys that I’d given to Ruth, but I asked her to hang onto them in case of emergency. I hope that she won’t let what Ruth did stop her from visiting. I know she likes to play Scrabble with me when she comes. What happens if I can no longer play Scrabble? Will that mean she won’t come here anymore? Maybe I’ll still be able to play gin rummy.
I took a photo of her sweatshirt when she was here. At least I was able to read and understand it and see that it’s funny.
So here are the photos that I take every day when I’m finally up and dressed and ready. They are all different days and yet they are also all the same.
This one is different. I think of it as a sinking American flag.
And here is my husband preparing food for me for the next days, assembly style. He’s always pragmatic.
Finally these three tomatoes caught my eye, and I told my husband that I would like to draw them. I told him I thought they were beautiful.
Beauty is in the eye of the beholder.
Love is blind.
I thought I had a friend.