The Alzheimer's Prayer
 

Hi everyone, as some of you know I am taking care of my husband lynn who has Alzheimer's. He also has sundowners, and is at times, aggressive and down right mean.:eek: I know it isn't his fault though, I know he still loves me..and if anything I love him more now than I did 23 years ago. It is a different love of course, I have moved from wife to care giver...the "old" love is still there, but now I have found a new facet as well.

Due to his AD and sundowners, every night is a battle. He can't help it, I know this...but it does still hurt when the anger and aggression takes over.
I have been his sole care giver since 04, and it is playing havoc on my health. I just had another TIA stroke, one of many this past year.

He is being treated by the VA, and his doctor is of the belief that he has AD, he needs to be in a home, and I better resolve myself to that fact. He wants to be home! I want him home! I just want the tools needed to do so.

He is in what I consider the hardest stage, he is bad enough to need constant care, but aware enough to know he is being cared for...and resents the hell out of it!! I can understand that. I am thinking I would as well. In home care help...he has thrown out of the house... he just is too aware to allow it. This is why I think the past year, and now are as hard as it will get...later when he isn't as aware, I will be able to bring help in to relieve me some. Until then, all I have been asking for is some medication to help with the sundowners, the mood swings and aggression.

I have been in the fight of my life, trying to get the tools needed to keep him home. The same tools every nursing home in the country is given. After this last stroke, a call to the VA commissioner and a new VA doctor, I am finally going to get some medications to help with his sundowner's! WHEW! It only took a year and a half, and 9 strokes :eek: :rolleyes: I just can't understand why care givers have to fight so hard to keep their loved ones home:mad:

I came here only to post the Alzheimer's Prayer...but I went off on a bit of a rant :o This has helped me immensely, I watch it daily....I thought I would share it with you all as well :hug: Nikki

http://www.inspiringthots.net/movie/...mer-prayer.php


Also this poem.....

"In the Garden"

Pray for me I was once like you.
Be kind and loving to me that's how I would have treated you.
Remember I was once someone's parent or spouse I had a life and a
dream for the future.
Speak to me, I can hear you even if I don't understand
what you are saying. Speak to me of things in my past of
which I can still relate.
Be considerate of me, my days are such a struggle.
Think of my feelings because I still have them and can feel pain.
Treat me with respect because I would have treated you that way.
Think of how I was before I got Alzheimer's; I was full of life,
I had a life, laughed and loved you.
Think of how I am now, My disease distorts my thinking, my
feelings, and my ability to respond, but I still love you even if I can't tell you.
Think about my future because I used too.
Remember I was full of hope for the future just like you are now.
Think how it would be to have things locked in your mind and
can't let them out. I need you to understand and not blame me,
but Alzheimer's.
I still need the compassion and the touching and most of all I
still need you to love me.
Keep me in your prayers because I am between life and death.
The love you give will be a blessing from God and both of us will
live forever.
How you live and what you do today will always be remembered
in the heart of the Alzheimer's Patient.


Carolyn's husband, Chuck, has Alzheimer's. She was his full-time caregiver until he was placed in a
facility in 1999. Carolyn's web site at http://www.caregiversarmy.org/Carolyn/ features her poetry
and her journal. Carolyn is also founder of Caregiver's Army.

Beautiful prayer. Thanks for sharing it. :hug:

I'm so sorry for the struggle you're having with your DH. My sister had early onset Alzheimers and passed away at 57 years old. It was a terrible struggle for my BIL and he kept her at home until he could not longer give her the care she needed and deserved. It was heartbreaking for him to put her in a nursing home. But it was necessary.

Before he did, though, it was terribly nerve wracking to be around her. She was aggressive, verbally abusive and downright mean. But, we knew it wasn't "her". We didn't argue back with her because it would have served no purpose. It was so difficult for hear her tell me she hated me - but I knew deep in my heart that she didn't. It was the disease talking.

My BIL felt so guilty for leaving her each night in the nursing home (he went and stayed with her every day after he got off work). The stress was taking it's toll on him but he loved her so much and just wanted to be with her.

I hope you can find some help that your DH will accept. Maybe someone to cook meals for you that you can freeze (that can be done somewhere other than your home) or someone to pickup and deliver your laundry. You'd be surprised at what good friends are willing to do to help - if they just knew what to do!

You're in my prayers - you and DH both. I know the struggle you're dealing with. :hug:

Thank you Kelly for your thoughtful reply. I am so sorry to hear about your sister, so young! I hate this disease with every fiber of my being. A collapse of ones body is hard, but this....there just are no words for it. It robs one of their very essance, just so wrong in so many ways :(

I am glad you were able to blame the disease and not your sister for her words and action. I try to be the same way, but....it does still hurt. Going from ones princess to their punching bag (verbal)has been extremely hard.

I can understand how your BIL felt, with the early onset, I am told it is also more aggresive in stages. I do hope to keep him home until the final good-bye. But, I also have things in place in case I have a massive stroke, or ..something else happens, that prevents me from keeping him home.

There are all sorts of repite care and grants I qualify for, but he would freak out if I left him to take care of me. So for now, I see no way to take a break.
After this last stroke, his children have been talking with me and seem more willing to help. We will wait and see I guess ....Again thank you! Nikki

(((Nikki))) Thinking of you with love. :hug:

Update...
 

It was a long battle, but Lynn DID start his new medication on wed night... for THREE WHOLE nights, he has slept through the whole night, so peaceful. Not only that, but it is also effecting how he has been in the day time too!!!

This morning, *crying* I woke up to hear words I haven't heard in years!!
"well good morning angel face" OMG, he use to say that every day!! But through the AD rages, it wasn't able to surface....Now once again it is!!

I am still losing him, I know this. But, I am so thankful to God right now I could just bust!!! Alzheimer's is stealing him away from me, but his new medication is "giving me back" the man I love.

I just had to share that with you. I have been crying all day, happy tears!! :hug:

I'm just so thrilled for you Nik-Key!

http://i117.photobucket.com/albums/o...01/prayers.jpg

Hi Nikky. I have just signed up so am new to this. I am so pleased to hear about your husband responding to the medication. My husband was put on one anti psychotic but it left him like a robot, so I took him off it, and now he is on a very low dose of a different one and seems a bit better, but still very insecure and childlike and although he is supposed to be in the early stages, he sleeps every time he sits down and is no company at all. It is a very lonely life and thank goodness for my internet!!! Jean.

Hi Jean and welcome to NeuroTalk. You'll find a lot of company and support on these forums. We also have an Alzheimers forum...http://neurotalk.psychcentral.com/forum59.html

and a social forum....jump in anywhere. :hug:

Hi Jean! Welcome to NeuroTalk!

I'm so sorry for the struggle you face.....your husband is very fortunate to have you by his side as his advocate. Please join right in anywhere you feel comfortable....there are many caring and supportive people here.

Welcome
 

Hi and welcome to neurotalk Jean:hug: This particular forum has little activity, unless you count the news bot lol. I rarely check in. I am however always available if you wish to talk. Just IM me :hug: It is a horrible disease, and so very hard to witness.

I belong to an online support group for spouses only. The issues in dealing with Alzheimer's in your spouse is unique and different than caring for a parent or grandparent etc, the founder of the site realized this and created a safe haven for us. Please do come join us :)

http://thealzheimerspouse.com

My heartfelt sympathy for all you are going through, and will experience.
Know that you are not alone. Thinking of you, Nikki

from one who has been in your shoes - loving hugs!

Hang in there, it will be easier some days , worse on other days (and nights). I took to silently screaming at the disease as if it was a third person in my home."Damn you dementia! I hate you!" Sundowning and agression hurt my very soul. While my mind knew it wasn't from them, my core was sometimes cut to it's quick.

I am plesed to hear the new med is helping. Being the caregiver and also haing health problems of yourown is no picnic.

In 2005 I had a hearing in a foreclosure. I had a hard time talking because I still had tetanus, having been unable to get the antibiotic to kill the bacteria... I was too poor. Anyway, at the hearing I was having a hard time following things and talking, and although I'd asked for accommodation of my disability, I have some brain injury, the judge said that I probably would get worse and not better, giving me the impression he viewed me as having Alzheimer's.

Now, I'm lucky I had the tetanus and not much money because in lieu of the "proper" treatment I had a LOT of B12 shots, and my handwriting today is much different than it was then, as if my pain level -- I used to have horrendous pain from peripheral neuropathy. My thinking is better, but it's no where near what it was.

I was much more aggressive and mean while I had the worst memory problems. I think that comes in part from not being able to express oneself. I still swear a lot more than I used to, because I didn't use to swear at all.

Okay, so the fact is that methylcobalamin regenerates nerves. It works quite well, I would say from my experience, but it doesn't restore total use. I mean, after being without the full function of my brain for several years, I can't use what brain matter I appear to have recovered the way I did before I lost it, I appear to have to relearn how to use it, as if I were a child again.

Not in everything, but a lot of things.

In terms of you and the drain it is to give care for so long, that is an incredible stress on your body, as you know and have already commented.

I strongly urge you to check out a list of symptoms of low B12 and if you have some, then get methylcobalamin in the lozenge form and begin using it.

I use a LOT of methylcobalamin, about as much as having a B12 shot a day, and it was using that amount that restored so much of what I had lost and relieved so much pain.

((((((((((Nik-Key)))))))))))