I figured it was time for an update - seeing as I've had several trips to visit mom and dad in the past 2 months and mom just gets progressively worse. However, she is still smiling and I guess that is a good thing. I'm scared for the time when the smiling stops and the "dear in the headlights" look is the only expression she shows.
Mom is generally happy and willing to do almost anything you ask. "Willing" being the key word here. She is pretty agreeable these days. She'll agree to do anything you say but that is as far as it goes. She doesnt' know what a fork is. She can't turn on the TV, or any appliance. She can't take something from point A to point B without wandering to point E, F G and then dropping it off at Point Y. But she'll sure try:)
The ladies at church are great about taking mom to activities, coming over to say hi, or bringing the youth of the ward over to sing to her. She is serving in the nursery at church which is truly a perfect place for her. She sits and holds the crying ones -- I'm sure both of them wonder at times why they are there and if anyone they know will be coming to get them soon:)
The other day when someone asked her how many children she had - she drew a blank. She asked my dad how many kids they had. Sad. I reminded her that she has two. "oh, that's nice" she said -- this is her answer for most things.
Mom use to LOVE to work in the yard. I took her out to do some weeding. I discovered another lost skill of hers. She just sat there and "fluffed" the bark, pulled some top leaves off the plants and was LOST.
Dad is having the most difficult time as he's losing the love of his life. He's holding on hard, refusing to look this ugly monster of Alzheimer's in the face. I think he longs for the day when they entertained and went out places as a couple. Now, he has a 5 year old, trapped in a little old ladies body. She isn't as "put together" as she use to be - unable to do any grooming herself. He is responsible for bathing and dressing her now. He took her to Macy's to get a make up make-over. Had the lady show him how to do it and he actually puts makeup on her. He's trying so very hard to keep his sweetheart alive in his memory. I know at some point, she is going to argue with him about the whole makeup thing and not want it. But for now, she just stands there sweetly while he paints a memory of who she use to be, upon her face. It's super sweet.
With all his tenderness and love for her, there is also a level of frustration. They were SUCH A TEAM and even more so after their mission. Cleaning together, cooking together, shopping together.... now they can't even put a table cloth on the table together. She is losing her ability to understand what he's saying. It's like we are all speaking Chinese to her at times.
I went through her closet/clothes the other day with her. My oh My. If you know my parents at all, you know they like to shop. I've had to put the kibosh on the clothes shopping. If mom says she likes it, dad buys it for her. We got rid of 60 pieces of clothing the other day ...so many things that don't fit anymore (she's pretty tiny right now). In fact, we got rid of so much that we get to go shopping today for some pants as she ended up with one pair of jeans, one pair of cords and 3 pairs of light green Capri's. We are just paring down to "outfits" so getting dressed/selecting outfits is much easier for my dad. .............................. The SHOES are next.
Mom is still happy although she has a moment of tears just about everyday. It's brief and after about 2 minutes it stops as she can't remember why she is emotional. I think it's got to be her body's way of letting off a little steam.
Dad is getting tired. I can hear it in his voice. Less and less patient with her. He's been in denial for so long and I imagine that he's avoided preparing for all this when the diagnosis first came years ago. It's got to be hard watching your sweetheart and soul mate slowly disappear. He doesn't really want to talk much about it -- and we rarely have any time without her around so that makes it more difficult.
And this is where we are.
Oh Penny, I can so relate to all of this (except my dad doesn't do make-up). Nothing about this disease is easy. One thing that has helped my Dad and the rest of our family understand what is happening better is called The 36 Hour Day. If you haven't read it, I'd recommend it. It might make things easier for your Dad. I will say though that the first time my Dad read it, it was really hard and he didn't like knowing what was looming ahead of him but with the passage of time and and second reading it helps to know better how to cope and to understand it is the disease talking and not her. My heart goes out to you and your family as I know first hand how hard this is. - Maria
ReplyDeletePenny, you are so brave and such an awesome daughter! It's important to shed light on this difficult, tiring, sad disease. It truly is the long good-bye. Know that you have an army of angels watching over and praying for your Mom, Dad and family. Love you so much! -Ann
ReplyDeleteThe 36 Hour Day became my "handbook" for the past few years, mostly to be able to help Dad. It's a hard transference of roles. My only caution, watch Dad, take care of him (you know my story). He is putting so much into trying to save what was and protect her that his health will take a back seat. And, don't forget I love you (xox). Paige
ReplyDeleteLovely post Penny. Please keep writing, it will help. My thoughts and prayers are with you and your lovely parents.
ReplyDeleteSo sorry to hear this Penny. Your father's example is extraordinary. What I learned with our (very different but somewhat the same) experience with Loren is that you have to grieve for what you have lost. And then you have to get some respite. I learned that if I could get some time away, I could come back and do it all again day after day after day. You can endure a lot if you get occasional breaks. I hope he can get away--meaning a few days somewhere else having fun and being distracted. Worked wonders for us.
ReplyDeleteLove you,
Kristen
Funny thing I remember my mother reading the 36 hour day years ago when her mother was diagnosed. however I dont think my dad can read it. She is glued to him.......
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