OT - Update on Lynn
 

Well, we went to Lynn’s VA doctor on Thursday and I have been crying on and off ever since. I wonder how I can be so close to Lynn, yet so blind to what they are telling me? Or perhaps, that is exactly why I don’t see what others do. I am TOO close. Perhaps too, I just damn well don’t want to see!

We got his test results back. Out of 30 possible points … on his memory test he scored a zero. His cognitive test he scored a 6. I was told that his cognitive function, his thinking process is between that of a 5 and 6 year old. WHAT! :thud: :yikes: :thud: I mean I knew he was bad, I guess I just didn’t realize how bad. As a caregiver you just get so use to taking up the slack and caring for them…helping them do thing they have trouble with… that I never stopped to think that is something a 5 year old can do on their own.

I also asked for extensive testing on why Lynn continues to lose weight. I am told over and over it is just part of the progression of Alzheimer’s. If I hear that one more time, I might scream! Lynn is wasting away before my eyes, and nothing I am doing is helping. He is eating very well, yet he keeps losing.

His last weigh in, he lost yet more weight. Fully dressed with his shoes on he only weighed 119 lbs. He is just a shadow of the man he was, not two years ago. Now he is literally skin and bones, helping him shower and dress, it is just so painful to see him this way now. :(

All the test they did to see if something else was causing the weight loss all came back normal. I called my neurologist-my friend- in tears, demanding to know how I could stop this process. He was so sweet to me, letting me cry rant and scream. He then did give me an explanation to the weight loss I could accept. Alzheimer’s destroys, and eventually kills brain cells. What is happening is that the part of the brain that effects metabolism has been destroyed … his body no longer has the capacity to know how to use the food. So… nothing I can do to stop this. :Noooo: I guess part of me already knew this, but it is so hard for a fighter, to admit they are beaten.

I made a decision. I have decided that I am not going to subject Lynn to any more testing. The VA doctor insisted he needed to be tested to monitor further decline. I refused! Lynn is only going to keep declining, there is no hope left. When one reaches a zero in memory, truly .. what is the point of more testing? Hearing the decline in technical terms and his scores on test… isn’t doing a damn thing to stop the progression. All it is doing, is making my heart break further. I do not need a number, to tell me he is slipping away from me.

My doctor told me about all the things that could happen in late stage 7. Lynn isn’t there yet…. He still tells me daily he loves me…. I am trying to focus on what we still have… not what we have lost.. or what may come. I am scared to death. Alzheimer’s has stolen so much from us. But, I refuse to allow it to rob us of the time we have left!

Thanks for letting me share with you all, "my family"…:hug::hug:

I'm so sorry Nikki....it's just heartbreaking to watch someone we love slide into that abyss. I'm so glad you have family with you...people to lean on and to love you. Let them...............:hug:

nik,

it's gotta be one of the hardest decisions in your life to make...but I applaud you in making that decision and please know that there really isn't a right or wrong in your decision...

what I see is that you are going to offer Lynn a quality of life...one where instead of being dragged around getting tested here and there...

you are offering him quality time to be spending with him for whatever remains....

I hope da wife comes in later and share some of her views on how she took care of her dementia patients...and that toward the end, it is more quality of life that is needed and wanted...

Lynn is so very lucky to have you and you to have him...

I can only hope that toward this part of your journeys together, that there will hopefully be more hand holding and hearts melting than needles probing and testings...

((((BIG HUGS))))

love,

da mois

Hey Nik-key~ So very sorry that your DH seems to be slipping farther away from you. I understand (somewhat) of what you are going through, but on a different level, as my MIL has Alz and she too, is also just a shadow of her former self. It's so hard to watch, yet you and Lynn have still got love and when he tells you he loves you, you know he still means it.

Sometimes, they just tell you that w/their eyes. Wish there was something really great I could tell you and make it go away, but it's a cruel disease and I admire you for your love and care for him. Hang in there and let other's help you whenever possible.

Sending hugs and prayers your way.

:hug: Nikki :hug:

I'm so sorry you're going through this with Lynn. I can totally understand your not wanting to subject him to more testing. Really, what is the point of further testing except to pay the doctors for it?

I lost my Mom in 2005 and my sister in January of this year to Alzheimer's Disease. It's a very cruel disease because you have to lose them twice. I watched them both struggle with this disease. :(

I admire your strength and your courage. I know what it's like to try and care for and "reason" with someone who used to be able to carry on a conversation with you but who now just stares blankly at you. It's a terribly helpless feeling.

If you ever need to vent.....or just want someone to talk to.....please PM or email me. I don't want to impose on you but if you need a shoulder mine is here. It's been well used but it's still in pretty good condition! :)

Just wanted to let you know that you're not alone. :hug:

Nik-key ~ Holding you in my heart and in my prayers :hug:

((Nikki))

I am very familiar with the destructive nature of amyloid - the protein that has infiltrated your husband's brain. My particular type of amyloidosis is effected by the same type of amyloid protein, and also has some brain involvement. I sometimes forget how to pick up a spoon or open a door. I almost called 911 when my TV cable went out one day - couldn't remember what buttons to push on my telephone to get the TV back on.

I understand why you don't want to seek any further testing. I did the same thing with my docs because it was exhausting and depressing to only measure increasing negativity without any real hope for improvement. I made a deal with them. I'll call them if I need them, and they will try to help me if they can. I only visit my eye doc when I'm well enough to go through the torture of his eye exams. It gives him a thrill to provide his colleagues, residents and medical students with a glimpse into outer space. :eek: He says my corneas look like the surface of the moon, but one of his colleagues says they are "beauuuuuuuuuutiful." :cool: It's a thrill for them, but last time we had to stop several times because it made me so sick.

I'm so sorry this monster is attacking your husband's brain. Cherish your "I love you's" and play them back in your head over and over again until the song is firmly stuck into your brain.

This monster may take your husband's brain, but it will NEVER take your husband's heart. It belongs to you and always will - even when your husband can't remember your name. When your heart cries for him, remember your song and sing it to yourself. :hug:

Oh (((Nik))). We all love you so much and just hate seeing you hurt. :(

You're such a wonderful person and it's so unfair. I'm so very sorry for what you're going through. Just know how much everyone here cares about you and what's happening.

Much love to you now and forever dear lady. :heartthrob:

Nik-key, much love and prayers for your continued strength as you continue to care for Lynn. I admire you for what you are doing, giving Lynn the quality of life he so obviously deserves. Remember to take care of yourself, too. You are precious.

:hug:

My heart goes out to you Nikki - you are not alone.