It’s been a few weeks since I posted.

The drawing above illustrates the “hard truth” of what it feels like to lose the ability to fully take care of myself independently, the regression that comes with Alz, the ongoing need for companionship and assistance, the realization that no one can really understand what I’m going through, and that everything is economics.

I know I have progressed since the summer. My behaviors and speech are very peculiar. I hear myself speak and realize that I am dropping pronouns and sounding more aphasic. My sentences are clipped and I hear an alien voice come out when I speak. It’s like I have to push the words out to express myself. I often can’t find the words to describe things. I sound very nervous my husband tells me.  I often have terrible agitation, I pace, repeat, talk to myself and babble. It’s embarrassing, yet I can’t control this a lot of the time. My husband looks at me aghast. Yes, I am losing my mind, have lost my grip. Only when I sit here at the computer and am able to reflect and write about it, am I composed enough to see that these are the progressive symptoms of a disease of my brain. It’s not who I was. I never paced and babbled when I was well, for heavens sakes!

Anyway, I made this drawing after the young woman who was my companion quit, and the woman who was involved with my case, the cognitive remediation counselor, recommended I go on Caring Kind’s website and look for another home health aide/companion who has training with Alzheimer’s people and is trained in dementia care.

Here are some examples of what I found:

 I offer companion care services. I have a certificate with CPR, First Aid, and I recently took the 50 hours of Dementia  with CaringKind, I am very grateful with them. I have years of expirience also many recomendations.
I love to work with elders and I have many good memories with them. 
Fell free to contact me, I will be waiting.

Pardon me for finding fault, but this person can’t spell. Ever heard of spell check? I guess one can earn a certificate in CPR and First Aid, and not be able to spell or use spell check. It just makes me wonder who this person is and how they could be a suitable companion for the likes of me at this stage.

Here’s another-

 I have more than 1 years of job experience as Home Health aide. I would describe myself as Spiritually stable. I am responsible , i have received training for people with alzheimer and dementia…

Spiritually stable. That’s so interesting, but what does that mean? I’m actually very interested to meet someone who characterizes themselves as Spiritually stable. Clearly I am not that, and maybe she is a good navigator who can help me spiritually.

another…

My information is coming soon!

Well that’s not enough information, sorry, I will have to take a pass.

I DID FIND A WOMAN WHO SEEMED IDEAL-

Why I choose to work with people with Alzheimer’s. My mother in law was a brilliant and fun loving women who had Alzheimer’s. Helping my father-in-law to care for her led me to want to work with other’s who have Alzheimer’s and other forms of dementia. I started working full time as a companion in 2013. I don’t see a disease. I see a person. Perhaps their world is different than yours and mine. My job is to enrich their world by living with them in their world. One connection I found to be a powerful tool has been through photography. Through my years of being a companion I have found that it is the power of photography that remains a strong connection for a person with dementia and memory. My husband and I have a professional photography business. I use the power of personal photographs to create collages…

I thought- PERFECT- she will get me, I’m a creative person, an artist, or I was, and she will understand me and how devastating it is that I am suddenly unable to function as I did before. She’ll be able to accompany me to museums, and be a great companion. I wrote her an email and asked her to be in contact with my husband who now handles all the finances.

The next day he told me that she had emailed him and that she told him clearly she’s not a home health aide, but a companion, and that she charges $50 an hour. She said that  because I am not in Manhattan and she would have to travel to get here, she would require a 16 hour minimum for 2 days. I can still use the calculator on my iPhone and that shows it would cost $800 for her to spend 2 days with me per week.

I now collect Social Security Disability Insurance through the Compassionate Allowance Initiative for people who are under retirement age. On a monthly basis it’s not much more than this woman would make in two days. Yes, pitiful, but I was working as the chair of an art and art history department in a private school and these elite private schools are notorious for the lower salaries they pay for the privilege of working in a school with smaller classes and gifted students, so my SSDI is pretty low. This means my SSDI per month payment would pay for about 2 and 1/2 days of this woman’s fee.

So that companion is not going to happen for me, unfortunately, as perfect as she may be. It’s not affordable. She is deemed to be a companion for the ultra wealthy old folks who can afford her services.

Me – I’m going to have to be alone, or let my husband hire someone who may not be a suitable companion, culturally or cognitively. I don’t have any friends or relatives who are free to escort me to doctors appointments, museum programs for people with dementia, or even to go for walks. I am generally alone, except for one dear friend who visits every week, another woman from my synagogue who invites me to go with her to cultural programs there, or when my husband, who is exhausted and generally does not like to be in the same room with me, has the patience to take me out for a walk, or visit one of our children, which means he drives.

I’m cognitively impaired, but I’m not stupid. Without a hired companion, I won’t be able to go to museum programs for people with dementia, because there’s no one to take me, as I haven’t been able to travel by myself for the better part of two years.

Unless, I lower my standards. Maybe I can get someone who charges $20 and hour. Who will that be? Hopefully it will be someone who owns an iPhone and speaks English and can text.  I can text, and hopefully it can be someone who knows how to text. (I’m trying to be funny here, and point out the insane hilarity of where I am in this disease, able to text on an iPhone, able to type this post on my computer, but too cognitively challenged in terms of navigation, and confidence to be able to travel alone and get anywhere on time).

Why can’t I travel alone? Because I get agitated, disoriented, unable to gauge how long it takes to get to places on public transportation, and potentially I may get lost. I have a great deal of trouble being alone in crowds, noise is not filtered anymore and cars, voices and all sounds come at me simultaneously (I am imagining now my dementia mentor telling me to use noise reducing headphones. She is the expert at accommodations for people with dementia, but that would be dangerous to do in Manhattan when one has to cross very noisy and busy vehicular intersections, as well as deal with crowds safely- you have to be able to see and hear, and know where you’re going simultaneously to not get hit by cars). I may need to use a bathroom. Oy! People with Alzheimer’s don’t always have control over their you know what. I would hate to wet my pants in public because I couldn’t find a bathroom. Maybe I should get my husband to buy me Depends and bite the bullet. Maybe I should buy myself a memory bracelet with a navigational device so if I get lost, my husband can alert the authorities to find me and conduct a safe return. He will be in another state at work. I guess the authorities could hold me until he picks me up.

I am trying to funny, but it’s not funny.  I am not getting lost in my own home, yet, as you saw Julianne Moore as the character Alice got lost when she tried to find the bathroom in her beach house, if you saw the movie. But it happens to Alzheimer’s people. It’s part of forgetting, orientation and navigation.

I’m an educated woman in the early to moderate stages of a disease who is not just losing her mind, but is traumatized by all of the circumstances that began 2 and 1/2 years ago and have led to this point. How can I have changed so radically from being the confidant, friendly, globe trotting traveler I was, to someone who is fearful, anxious, socially awkward, and disoriented? Maybe I should use UBER or hire a dedicated driver to take me places. Driving Miss Daisy my husband calls it. Let’s see what would that cost (probably a hundred bucks or so round trip), and what happens when the Uber driver calls my phone as I wait for him at the museum entrance, and tells me to meet him at a distant corner because he can’t pull up in front of wherever I am located, where hopefully I was able to remember and tell him the correct address and street (?). I would need to find and identify his model of car and be able to identify myself. “I’m the woman with the gray coat and hood waving madly at the corner, do you see me?” If only it were that easy. It should be. It should be easy.

Perhaps you can’t comprehend the complexity of what I am describing and why it isn’t easy. Well picture this. I hadn’t been out of my house in 3 days, but did walk about 6 blocks today. That was something I could do.

It should be easy to do these things. Travel to Manhattan to a museum and back. It was so easy when I had friends, knew how to navigate, had tons of energy, and could be alone easily, or go anywhere myself.

It was all so easy.