I can't hide but Why do I have to know so much?
Failing memory happens to lots of us. We age. We have more to remember and more things we recall. What is it like to see this in a loved one and know the path Alzheimer's Disease takes? I don't know, but I am learning. I know the disease, I know the man. Now I will know the two together."Where is that file? I can't find that bill. #$%@#$% drivers, too close. Could you balance my check book? Where did I put my glasses? Who moved my keys?" Daily these questions come to me. Not from a patient, a client, or even a resident of an Assisted Living Facility. This is my Significant Other, my partner, my love.
I get him to go to the doctor with the lie of my fear of him having a stroke. After all his B/P when it was checked last time was 170/100. I don't mention that it was when he was in acute pain following a smashed finger in the car door. He remembers the accident and remembers the blood pressure so he goes. I mention that his memory is not so good. He agrees to talk to the doctor about this.
With a bit of coaching he tells the doctor that his memory is not as good as it used to be. He gives specifics, some of the ones I already mentioned. He does not mention his problems keeping a checkbook. It does not matter. His physician knows him. Knows he will not see a doctor unless there is a major problem.
The doctor looks at me. I agree his memory is failing. I acknowledge the incredible stress he has been under the past year. My SO describes the theft of many thousands of dollars by his previous secretary. The doctor immediately connects the dots. She saw him as a vulnerable adult. I had only thought of her as a thief. My SO is bankrupted by her. He is humiliated and did not want to go to the police. His job is to defend criminals. He is reluctant to turn one in and expose himself as being foolish.
I share with the doctor that we had talked about his memory and I had suggested seeing a doctor about it. He, my SO, had agreed, especially when I told him they now had pills to improve memory. I did not mention that they were given for Alzheimer's. He did not ask.
The lab work has been ordered the CT of head without contrast is in the works, Aricept, Thiamine and Folic Acid ordered. My SO acknowledges he drinks more than he should. The doctor tells him to stop. He agrees.
We walk out, not holding hands, but together knowing our lives have changed forever. He will be listed as Inactive, disabled to the Bar. His ability to practice law will be gone. He will need to survive on Social Security and a small pension. He is frightened. He does not cry, but holds me tight and thanks me for being with him.
I know this is the beginning of a long and tough road for both of us. Nothing has changed and yet everything in his life and mine are changed forever, and we do not have the official diagnosis, yet. And maybe my SO will be better with the Aricept and the decrease in stress. I pray for this and cry that this love of mine may come to a day where he does not recognize me. I know too much. I will walk this path wherever it takes us.
God willing I will share our journey as we go. I am now a family member whose loved one may have dementia of the Alzheimer's type.Last edit by Joe V on Feb 25, '13
AKY is a retired nurse whose new career path is that of a paralegal office manager. Her extensive experience with dementia and other areas of nursing provide an unusual connection for those whoe legal rights need to be maintained. Mother of three, grandmother of two, aunt and great aunt to many, aky appreciates life at all ends of the spectrum and finds Pink Floyd and The Moody Blues soothing to the soul.
TopazLover has 'a life time' year(s) of experience. From 'Delaware. River and State'; Joined Jun '08; Posts: 8,003; Likes: 23,285.7Feb 22, '13 by VivaLasViejas, ASN, RN Guide(((((AKY and SO)))))
Such a poignant and beautifully articulated love story.
My heart goes out to you and your mate. He is very blessed to have you by his side as you venture into the unknown together. You have a great deal of courage, my friend, and I admire you for seeing it through in such a positive and dignified manner.
God bless you both. xoxo7Feb 22, '13 by BCgradnurse, MSN, RN, NP GuideThis so sad...but the beauty of your love for each other is so evident. I hope and pray the pills and decrease in stress help, and you have many more years together.
Love you, and sending hugs and warm wishes to you both.9Feb 23, '13 by herring_RN GuideMy life long friend's husband has Alzheimers. He took the dog for a walk and couldn't find his way home about a year after taking early retirement from his professional job. He knocked on a door and the lady called *****, his wife since 1975.
That was 2002.
He is still himself. He know her always, fo far.
he only know me when my husband is with me. We've known him since they first met.
A single mother LVN comes to the house early on school mornings with her two kids so ***** can go to her teaching job. She cares for him along with her toddler and kindergarden child.
He will read them the same book over and over again. He taught elementary school for decades.
Last summer we two couples went to the beach. ***** and I surfed. Two old women were a comedy of clumsy. My DH told me he said over and over, "Our wives are the prettiest girls on the beach."
He also said, "I think I'll open a diet coke." every five minutes. DH would hand him his can of Coke and remind him he just opened one.
He is in his sixties. His mother is alive and alert. He looks older than she does.But he is mellow and not angry like so many people I've czared for. His smile comes easier than when he was working.
He enjoys music as much as ever. Just a couple years ago he could still play the vibes. He is a Lionel Hampton fan and was once a fine musician. How he smiles and keeps time.
He sings with his caregivders kids.
This is the third LVN caretaker they have had. With her encouragement and help the first is now an RN and the second in school. She does not want the bright young nurses to stay in the job after their kids are in school full time.
It is clear they love each other.
AKY: You know I prayed for you as i typed.6Feb 23, '13 by nursel56 GuideJust want to echo the sentiments shared by others, AKY. Your writing makes that snapshot in time very real. Again, blessings to both of you. ♥5Feb 23, '13 by Liddle Noodnik Guidere I pray for this and cry that this love of mine may come to a day where he does not recognize me
Sad, and crying with you AKY. xo5Feb 23, '13 by NF_eyenurse, BSN GuideOh AKY.....((((AKY &Your Love/SO)))) Praying for you both. I am glad he has a wise doctor that took your clues spot on. And I am glad that he has you to love him so dearly.6Feb 23, '13 by Sabby_NC, BSN, RNOh AKY what a very poignant post full of wisely chosen words and such love for your SO. I feel you handled this with such grace in getting him to the doctor and starting the process of diagnosis. I shall pray for both of you, especially you for strength and peace of mind as you both commence this journey. Much love and prayer I send to both of you.8Feb 23, '13 by leslie :-Dthe more i read about your life aky, the more i am convinced that you were placed here as a wise, old soul...
whose *tests* on earth will ultimately designate you to a nirvana that most of us won't reach for a long, long time.
no, i do not expect you to be comforted by my thoughts...
but am hoping you see its purpose in ascending to our highest God selves.
because that is what our place in this holy universe, ultimately dictates.
so yeah, it and all of your challenges, make a lot of sense to me.
still and sincerely, i do feel badly for all of your potential losses and its implications.
i am however, incredibly grateful that it is you being there for your so.
this experience will result in a profound love, appreciation, comfort, and safety for the 'pt' here.
God will take care of the rest.
much love, my very good friend.
leslie6Feb 23, '13 by rdsxfnrnSo sorry, AKY. I am just reading this now. I have been "away" mentally. (my mom passed away Feb 15) Good on you for getting him some help. It is so much easier to just bury your head in the sand and pretend everything is fine. Having the knowledge you have will be a two edged sword. While you will be aware of what is going on and what is to come, you will be better able to prepare than most. (how well I know this) Do lots of research now, BEFORE you need to. Find out what help is available to you. I know in CT ( and I could be wrong) they (Medicaid? Medicare?) will pay for a 24/7 caregiver in the home. It is a new program, within the last year, and I only know because the social worked at my mom's LTC wanted this option for her. There were many provisions to this, one being you have to be the case manager.
Good luck, and Godspeed. You can do this. xoxox8Feb 23, '13 by sharpeimom GuideAKY I'm so sorry to hear about your SO. Tears are running down my face as I type this. As your relationship changes, you will continue to love each other. You will always love him and he will feel it for a long time to come, even after he may not know your name or where he is.
My aunt and uncle have been married for 67 years. They married right out of college. He only recognizes her sometimes, but somehow remembers that he built their house. Even on his fuzziest days, when he doesn't recognize her as his wife, he is able to hold onto the fact that this person loves her.
As my aunt says, "You thank God for the great years you had together before, enjoy and cherish the days he recognizes you and get through the rest with the help of friends and family."
You can handle what lies ahead because you are a strong gutsy lady and you have family, friends, and your family here to help carry you when the load gets heavy. ((((((((((AKY)))))))7Feb 25, '13 by Ruby VeeI'm so sorry. Alzheimer's is a nasty, miserable disease both for the sufferer and for their loved ones. I watched my father take care of my mother until it wore him out, and then I tried -- and failed -- to care for her in her home. My mother-in-law has Alzheimer's as well. DH and I both understand that the disease is hereditary. And I wonder . . . which one of us will be afflicted first?6Feb 25, '13 by TopazLoverThank you all for your kind comments. My SO is doing well. Scan will be tomorrow. He hurts for the loss of job as well as identity. I feel blessed to have all of you in our lives. I know the journey will be individual but the trip is one many have taken before us.
I am toying with the idea of studies that are being conducted about Alz. Obviously have not discussed this with anyone as we do not have a solid dx. I would appreciate feedback if anyone has had any connection with any of the drug studies with Alz.