I’m Tired by Rick Phelps
I’m tired
By Rick Phelps, Founder of Memory People
I’m tired. I say that alot anymore. I tell Phyllis June all the time. Leeanne, anyone who listens.
But sometimes its not a tired as you would expect. I like to think I am in the early stages of this disease. Somedays I know better, but I still like to think that I am.
But I am tired. I imagine other patients like me are also. What I am tired of is not being able to remember.
I can’t remember a day when I could remember things. It puts such a mental and physical strain on a person. I think my brain is working way to much.
Having to try to remember everything. And not being able to. It’s constant. I know it will get worse.
My greatest fear is and always will be for the ones who cannot communicate this. The ones this disease has robbed them of being able to even say they have no idea what is going on.
I wake up in the middle of the night in a panic. Not knowing where I am, or what is going on. I have these horrible nightmares. As many patients do.
In the mornings as soon as my eyes open this disease is there. Course it would be. It’s ones brain. Everything that goes on is controlled by your brain.
Just not being able to remember is only a small part of it. But the day in and day out of not remembering is getting the best of me. Mentally.
Go figure. The one thing this disease does, robs you of your memories and thoughts, is the very thing that I and others are struggling with daily.
Then knowing that today is or very well could be the best it is ever going to be. I am posting this not for any sort of sympathy, I just want to explain what I go through, and what I am sure your loved one is, even if they can no longer communicate it.
I’m tired. I suppose its no wonder. This disease drains you mentally and physically. I often think I cannot put one foot in front of the other. But know I must.
Remember this, your loved one is effected in many ways other than memory loss. The brain controls everything we do, not just our memory.
I would love just once to say “hey, I remember that.” or to be able to understand half the things people tell me.
And to be able to go from room to room in your own house and know why your in the bedroom, or in the laundry room. It’s the things we take for granted that this disease takes.
I cannot imagine how a caregiver/family member sits and watches their loved one fade away. This has to be the worst feeling, the most horrible thing to watch, and not able to do one thing about.
You, the caregiver have to be tired as well…
Yes Rick, we are tired. So many years watching this disease will destroy even the strongest person. Thanks for sharing.
thanks so much for writing.
Lori
Please tell Rick thanks for this post. It is very helpful!
Will do Thanks for writing
Lori
I have just recently been introduced to this web group and thought it only fair to share my story. My father introduced me to ALzheimer’s about twenty years ago. The years all blur together after a while. He told me he had been diagnosed with Alzheimer’s. I did not live near him – me in Ohio him in Florida with his wife. So, I really did not see the signs. His loving wife was his sole caretaker – Angel that she was. I noticed oddities during our phone conversations such as getting lost in conversations. He visited a few times until it became too dangerous to travel. He began sending me cash in the mail. I think he had lost control of the finances, but he still wanted to take care of me. He had been very successful in business, and had a comfortable financial position. His incredible business acumen was a far cry from his current mental state. It was a sO very heartbreaking. I visited him several times, and then he went downhill very fast. The last time I visited him was in the nursing home (he had started wandering the streets at night forcing his wife to put him in a locked facility). He couldn’t speak except for a few words. He didn’t seem to know us, but he once started crying when one of the nurses told him he had a lovely daughter. So I think he knew me on some level. He also became very mean (totally out of character). His last words to me when I was feeding him were “please.. …..”. I think he wanted to be released from his situation. He could hardly sit in the wheelchair. He kept falling out of the chair. I prayed for God to take him. I was so relieved when he died. It’s only been in the last couple of years that I can remember him as he was before the disease.
I have also been the sole caretaker of my mother who is dying from Chronic obstructive pulmonary disease. So I have seen some of what caretakers do.
About 9 months ago at age 58 I was diagnosed with mild to moderate dementia of a vascular origin. My daughter initiated the testing. She had become very frustrated with me because I became so forgetful and had a great deal of difficulty speaking with her because I lose my train of thought frequently. I also wander the house because I forget why I am going into different rooms. This happens to a lot of us as we age, but it was happening to me all the time. I had all kinds of tests, 6 hours of psychoneurologist testing, brain scan and brain magnetic resource imaging. The psychoneurologist report was 9 pages and it was devastating. My neurologist had little to say except that I don’t have Alzheimer’s, but I have areas of dead brain cells. He gave me a one year prescription for Aricept and sent me on my way. The medication has helped quite a bit, but I have no idea where I really stand, especially since he told me I have a different form of dementia than what you usually hear about. I do have the support of a wonderful psychiatrist, but I think he really doesn’t know what to say.
So that’s where I’m coming from. I feel very lonely, confused, and useless since I can no longer continue the promising career I had started 10 years ago. I have put together a few compensatory things to help me. I write everything down, have a GPS in my car so I don’t get lost, and I’m struggling to get alternative care for my mom.
Thanks to all who take the time to help care for those of us who have difficulty taking care of ourselves.
Paulan
HI Paulan,
Thank you so much for sharing your story with us. We will support you in any fashion we can. I ‘m so glad you are connecting here on the web!
Take care
Lori
I have recently been diagnosed with Alzheimer’s and I’m experiencing exactly what you described. I’m 54 years old…..seems way to early for but the test results were clear. Knowing the significant cognitive decline still ahead creates a cloud over my life. It’s a struggle now so the next several years when the deterioration gets worse are going to be bad. I feel sorry for my wife.
HI Eric
So glad you found us. Welcome. 🙂
If you have not connected with Memory People on Facebook I suggest you do that. There are other groups I can direct you to as well like Forget Me Not and The Early Onset group on facebook. In addition you may want to join us on Dementia Chats which is a free webinar where we talk with those with early onset. They like you are the experts of what life is really like. Here is a link to Dementia Chats http://alzheimersspeaks.com/dementia-chats-webinar
Please stay n touch
Lori