You Can’t Buy a Friend

Suddenly Mad drawing The Hard Truth and You Can't Buy a FriendIt’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.

 

 

 

17 thoughts on “You Can’t Buy a Friend

  1. Very well put – keep hold of the typing. We have that in common. It helps others to understand why we do what we do even if we can’t always articulate. Much love and hugs from the UK, Wendyxx

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    • Wendy, Thanks very much for following me. What I would give to be brave like you are in the cold climate of the UK. I admire your heading out and pushing yourself. You have a wonderful community there. Strangely the New York City world is completely US and THEM. That probably goes for most of the USA. This disease is fiercely stigmatized here, unless you’re famous like Greg O’Brien who hobnobs with the Alzheimer’s Assn and the rich who like to write off their donations as tax write offs. I tried to send my blog to Seth Rogan at Hilarity for Charity and it bounced. A class system exists even within Alzheimer’s disease.

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      • Very sad – I’ve just realised I don’t know your name? I put your blog on Twitter today and people have welcomed a new experience. Some have shared it on their web sites. Have you tried Twitter? There’s a huge community of support on there and lots of people from around the world with living with dementia.xx

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      • Wendy can you direct me to the websites where my blog appeared if you know? I had Twitter before all this happened to me, but do not remember the password. Things are confusing for me on so much of social media. The reason I have this blog is that my daughter set it up for me, so I write and publish.

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      • I’ve tried to find the links again but am having trouble – one was Positive Living for those with autism and dementia but I can’t find the others -sorry:( Daughters are a wonderful asset – mine did the same for me:)xx

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  2. So sonderfully written. Your descriptions are almost exactly what I have experienced, especially your description of your aphasia. I was told by team of specialist at teaching hospital I have moderate to severe dementia, but yet I can still write to express myself. I am so thankful for this and am so glad I found your blog. I do not feel so alone anymore. Thank you…BlueSkies

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  3. Just want to say I love your writing – I found your blog from Twitter (my mum is Wendy Mitchell). Nodding my head furiously at the writing by potential ‘companions’. ‘No information available’…yeah I think I’d pass on that one too. Very interesting/horrifying to learn what it’s like in NYC. Best wishes, Gemma

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  4. Oh Minna- i feel for you reading this blog and yes renting a friend is not fun at all-it’s nasty, it’s cruel, it’s brutal, it’s heartbreaking and i so agree-no one understand and has no empathy for what you/other people are going through-awareness about Dementia/Alzhiermers is sooo important as for any other illness. I know how horrible it is having ongoing companionship-independence is such an important skill and is an essential in life so i know exactly how you feel-if i lost my independence i would scream!!!I am soo sad to hear of your decline and don’t feel bad about your mistakes Minna-it’s not your fault it’s just part of the disease-your an amazing human being and i feel so honoured and blessed to be able to follow your blog-your a super star!I am so sad that your companion quit-that is sooo heartbreaking and soooo devastating-that companion sounds selfish and mean-i hope your new one is nice and i can feel your frustration and dissapointment. I hope you find a lovely and affectionate caregiver and you get to do some nice things with them and $50 an hour is a rip off and super expensive and very over the top-holy heck!!My Grandad gets home help free during the week because it is only for approximately 40 minutes but he has a lovely lady called Coco who comes on a Monday for 4 hours and costs about $15 an hour. I truly pray and hope that there are some selfless caregivers who do it voluntarily and your friends are more available to accompany you to places-i would happily care for someone for free to make life easier for them. Take care, happy new year, and best wishes for a better 2018-blessings sam

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    • Hi Sam, thanks always for your compassionate heart. Tomorrow I’m home and going on a Dementia Action Alliance Zoom chat for the ART work group. Kind of excited about it. This woman who is a rabbi is supposed to be visiting. So no companion needed tomorrow, just need to push myself and have the ability to show up for everything.

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  5. Hi Minna, thanks for your reply and a very happy new year to you too!I hope you have a great 2018 and make some lovely new friends-many blessings too you too!I hope you enjoy it-please tell me how it went-look forward to hearing your experience there-i hope and pray all goes well-you deserve to enjoy it-your a phenomenal women. Enjoy some independence for once-something to look forward to huh and not being bossed around at all-phew-you must be relieved!!!Your most welcome for all the comments and my compassionate heart-i love following your blog and look forward to keeping in touch and i would love to meet you if you are ever in New Zealand or i’m in New york-take care and many blessings-sam

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  6. Pingback: Farewell 2017 |

  7. Pingback: Dementia, typing an insight. – Positive Life Workshops

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