I Forget — What it is like to have Alzheimer’s
A race against time…
I am in several races against time. But my races are not against the clock, trying to beat a time or a new PB (personal best). My races are more on a dramatic ‘life and death’ level for me and the people I’m trying to help.
I have Early-Onset Alzheimer’s. I am 56. Alzheimer’s is terminal. No cure. No slowing it down. Your brain is literally dying a slow death. Statistically, that means I have 8 -12 years to live. Because of the progressive cognitive decline (brain dying slowly), about half way through that I will no longer be able to take care of myself and will need to be put in a facility.
So my races against time have a real start and finish. Statistically, the start is the day of diagnosis. For me, that was almost a year and a half ago. You do the math, I no longer can. All I know is that I have a HUGE project I am working on (Race #1) that could affect millions of people for good if successful, and I am working urgently to get it off the ground and to the self-sustaining point where others can manage it.
Race #2 is to not go homeless. I was recently (six weeks ago) ‘let go’ of by my family. I didn’t see it coming. I now live alone. I have Social Security disability which is not enough to live on. Once my small nest egg is gone in two months or so, I will be homeless. Because I am under 65, not blind, not a child, and not in a wheelchair… I do not qualify for any help from anyone under the current government programs. I slip through the cracks. Yes, even though I qualified for full social security disability because of a confirmed Alzheimer’s diagnosis. I get a small check, nothing else. If I lose this race, it means I lose the other two races also!
Race #3 is how to afford to get into a ‘good’ memory care facility in a few years when I hit that middle stage of the disease. The average cost is $6k — $9k a month! I will need to have 3–5 years of care! This race I don’t focus on a lot… seems too impossible. So let’s go back to Race #1.
This race is where my heart is. It is my purpose in life! I have been thinking about it and working on it for months.
Wait a minute!
You thought I forgot to talk about what it is like to live with Alzheimer’s… I did! But I just reread things, and so lucky for you, here we go…
I forget everything, well almost everything, all the time. You might forget your wallet or keys or why you just walked into a room once in awhile. Ratchet that up to forgetting to eat, to get out of bed, to finish cooking what you started, to check the mail, to shower, to get dressed, to look at your calendar to know your schedule for the day, to finish this article, and the worst part is that you forget that you forget! But not just that. Squirrel!!!
Yep, it is more than forgetting, it is being super-duper distracted. I can be doing one thing, see or think of another thing, put it down for a second and totally forget it exists until I stumble back upon it. I only cook with a microwave now. I have walked out to get the mail and instead, gone for a walk, come home and totally never got the mail. I’m just glad I didn’t get lost on my walk or forget to wear pants. I can make a grocery list, go to the store and forget to look at the list and forget to buy half of what I was there for. Even if it was just two or three things. You forget that you forget.
I also forget people.
It hurts your relationships. I forget my friends, my family, my email conversations don’t get finished. You have heard: Out of sight, out of mind. That is my world. I mostly only remember things that are right in front of me. My phone is always sending me social media notifications. When I see people I know, and I am reminded to check in with them. This summer I had three different friends lose a parent to Alzheimer’s. I wasn’t there for them like I would have been if I didn’t have the disease. I hate that.
People want to give me advice all the time and say… you need a system. Write notes! Put them everywhere! I understand that system. That is what I did before I was diagnosed. It doesn’t work anymore. When you forget that you forget, then you forget to make notes. It is hard to understand until you live with a brain that no longer functions the way it used to. Now, I don’t really forget EVERYTHING all the time, that is what the middle stages of Alzheimer’s are about. That is when you repeat the same questions over and over again nonstop. I’m a few years from that stage. I just forget many things all throughout the day. And that is the main symptom of Alzheimer’s but not the only one. There are many more. I actually cannot remember what they are at the moment… but trust me, or go look them up.
Back to Race #1.
This race is where my heart is. It is my purpose in life!
Somewhere in this journey, I decided I wanted to help Caregivers of people with dementia. I became so frustrated that I couldn’t help these new friends who were caring full-time for their loved ones who were in middle to late stages of the disease. They are pretty much house bound and limited because they are taking care of them 24/7. It is fraught with stress. The emotional stress of watching their once normal loved one, now totally unable to care for themselves, sometimes not able to communicate or acknowledge their existence. They are dying slowly in front of them, slipping away a little more each day. Then there is the physical stress of constantly taking care of them, just like a newborn infant cannot do anything for themselves, but this infant weighs more than a hundred pounds, sometimes wanders aimlessly all hours of the day and night. That is just a teeny tiny glimpse of it. Of course, the financial stress is through the roof! The income of their loved one is of course now gone. So you went from two incomes to one and then Caregiver can’t work because they can’t afford to hire care while they are gone. Or they are trying to live off small disability or retirement income with the increased medical expenses of someone totally dependant on them. The house needs fixing, etc… How do you go to the store to get food? You can’t bring them with you and you can’t leave them alone! So much going on that seems impossible… with no break. It is so overwhelming, and many of them are abandoned by the family members who should be sharing the burden. It is a part of the collective soul, our society and culture has unfortunately lost.
I then found out,
it wasn’t just a few friends I had going through these huge struggles… there are 15 million Caregivers of people with dementia! 15 million! If you include all Caregivers of all chronic health problems (Autism, Blindness, etc…) and terminal diseases the number grows to 66 million! Now I know some of you may be thinking, well all of them are not that bad off. Some have plenty of money or family or friends. I agree! So let’s get to some conservative numbers. Let’s say we cut that number in half! 33 million people caregivers (not counting those who are afflicted). You know what, let’s just be super conservative and slash that in half again! 16.5 million people. That is more than the number of people affected by Hurricane Katrina. Oh, by the way, thirty years from now these numbers are supposed to triple!
If that is not enough of a bad situation,
then I found out the government isn’t doing much for this HUGE population. And won’t be putting a dent in it anytime soon. I asked myself who could? Who would have the resources to bring REAL and PRACTICAL help to all these people? Out of the blue, an answer hit me immediately. The Faith Community. Even though they are not a singularly organized group, they have all the resources. #1, They have the motivation to love and help the needy, which is a main tenet of every major religion. #2, They have lots of people spread around this country and the world. #3, they have access to money which can greatly help some Caregiver families who are destitute.
So I researched and found there are many small organizations, even some faith based organizations that are aware and trying to help Caregivers. But the holes are way bigger than the net. There is nothing out there going after everyone. One of the biggest problems is that no one knows where all these Caregivers are, and the Caregivers don’t know who to ask for help. I came up with a plan to fix that. It is beautiful.
I created a non-profit tasked to find all the Caregivers out there that need help and to find all the individuals in the Faith Community that want to help them. And I am connecting them up together on the local level all across the country (Canada, Australia, and the UK too). So when the person of faith comes to the home of a Caregiver family, they can ask: What do you need? What can I do for you right now? I see your lawn needs mowing, your house needs painting, fixing, cleaning. Do you need me to go to the store for you? Would you like a break for a couple hours? There are a million possible things that could be done to help the Caregiver family. Notice I didn’t mention caring for their loved one. Some of that requires training and not many of them will have that. But that is okay. We are not trying to solve everything at once. Maybe the local faith group wants to do more so they get trained to help. Or they provide the money to hire professionals to come in and help. There are so many possibilities.
There are some non-profits that train churches and other faith groups how to help Caregivers, but those faith groups do not know where the Caregivers are or they only look inwardly to those who are part of their community. Unfortunately there is probably a Caregiver family living four blocks away, and they do not know about the program. So if there is no connection and no one is there, meeting with the Caregivers, seeing their situation, then nothing will happen. Most of the other organizations offer things to buy or read or watch, but no one is coming to the house and helping. Now they will. Launching in December of 2017 is my non-profit: Faith2Care.org
I purposely didn’t go into all the details because there are so many… but it is beautiful. I know I said that already. It is heuristic. You will love it. And I will need your help to make it work.
Update: January 12th, 2018
I forgot to update this story with some good news. Race#1 is going well. We have raised enough funding to both push it forward and keep me from going homeless. I am so excited about this project! I have hired people to help me and we are getting very close to launching the website. Stay tuned.