That's my mother's high school graduation picture - 1947.
Monday nights mom and I have a tradition. We stay up "late" to watch Jay Leno's Stupid Headlines - mom loves them. Now, about 9:00 she'll start heading for bed and I tell her "mom, it's Monday night - we have to watch Leno's headlines". "Oh yes, I like those" and she'll go back to her chair to watch whatever else is on at the time. We'll go through this a few times until 10:00 when I join her to watch the news. Then Leno comes on. She still gets quite a bit of his monologue and laughs/giggles along with everyone else. But I've noticed something lately. She doesn't seem to "get" a lot of the headlines. The humor is too subtle and I end up having to explain a few of them to her. That really takes the fun away for me. Just last year, those same headlines would have had her laughing out loud, now there's just empty giggles or silent stares. A sign that the Alzheimer's is silently winning this war we've fought so hard to contain. I knew we wouldn't win, but I had hoped to stave it off for a while longer. I'm not ready to lose her yet. I shouldn't be too upset - after all, we've managed to put off the inevitable a lot longer than a lot of people. The life-span of an Alzheimer's patient is usually around 10 years after diagnosis. Mom was diagnosed in 2001. Officially. We (the family and doctor) really knew she had it for a couple of years before that. So by this time in Alzheimer's years she ought to be a lot farther along than she is. By this time, most patients are already in nursing homes, no longer cognizant of present family members, living mostly in the past. Mom still knows who we are, she still knows that her husband, parents and one child are gone. She still knows where she is. But I can see little bits of her disappearing every day. Slowly, the mother that I knew, the woman that I relied upon for my entire life, is fading away. People ask me why I'm so tired all of the time - after all, mom doesn't require any real "work" yet. Have you ever watched anyone fade away (Ruby has)? My father was in hospice in our living room for about 3 weeks before he died. We watched him leave. But this is different. I've often referred to Alzheimer's as a "dying of the soul". Where the "life" of a person silently vanishes, leaving only an empty shell. I used to see flashes of my mother every now and then, but even those are getting few and far between. I have a teenager on my hands most of the time now, a toddler at other times. And I miss my mother.
33 comments:
When my grandma got the same condition, I was able to detach myself fairly early on as the woman we knew and loved had already "gone". Cancer got her first, in the end. Fortunately, she wasn't aware she had it. It's a very sad time.
I can't even begin to understand what this must be like for you Eve. I feel such sadness when I read about the flame of her soul dimming slowly. It would be better I think the way your dad went. I hope you are doing ok.
aw Eve - that's rough. You're a good daughter.
Eve, I can't imagine how wrenching this must be. I've lost close family, but not to long illnesses. You're a wonderful daughter and person!
Oh, honey. *hugs* I can just imagine what this must be like. I'm not sure I could handle it myself.
I'm okay folks, just a bit melancholy last night sitting with mother. I'm not doing anything that my siblings wouldn't have done had they been in the position I was - unmarried, no children, no mortgage, etc. It was really important to keep her in her own home and I was the only one who could be here with her (I was already here when the doctor suggested that both the parents needed taking care of). She's really good, for the most part, and funny. Her inhibitions are falling and her humor is getting a bit risque - now if only I could get it through her head that flipping the bird is a lot more effective if she didn't giggle while doing it. She's also telling stories that I've never heard (but I've learned that some of them never happened - but it's interesting all the same).
Eve, it'd only been a year (maybe 18 months tops) from the time mom was diagnosed to when we lost her but prior to that she'd had all kinds of troubles, including seizures.
In the vein of that dying of the soul you mentioned, I actually went and saw a psychic after my mom died who said her soul was long gone before the car accident.
(((((((((Eve and MOm))))))))
My husband's trial was based on a woman with Alzheimers and we learned a great deal about the disease because of it. I can't imagine what you must be going through. Hugs to you.
Eve, what a beautiful picture.
I never thought of it in terms of the dying of the soul, but wow, it's so apt. Lots of hugs and prayers headed your way.
Eve, I hate that you are having to go through this. I lost my Mother a few years ago. She went in for surgery and never woke up. I wish for you; energy to help with the tasks at hand and love from friends to help heal YOUR soul, which is being scarred from all of this, too. We pray for you daily.
Oh, Eve. I've got tears running down my cheeks! You've said much better what I felt in those days when my mother's personality was leaving, her essence, what made her "Mother" and the loving person she always was. I can so empathize with you as you knew I could. No two people with Alzheimer's take exactly the same steps but this is common to them all. Be assured that though we can't find many hints of the soul left, it's still there. It will never die. It's just hidden from us.
My father's going was very different, too. Mentally he was still there but his personality had changed. From the time that he had his stroke to his death it took almost exactly 9 and a half years.
No death is easy. Your mother may still be around for many years but you'll notice more and more of a change as I'm sure you already know. Just cherish each minute with her. And keep your chin up. Have your moments of grieving but keep doing the things you love as well. I know you are both in God's hands. That is above all what comforted and upheld me.
Eve, hugs for the sadness of watching you 'lose' your mom and kudos for you for being there and taking care of her. Not many people could or would do that. Tells a lot about a person and I think you are wonderful.
That really is a beautiful picture. Once I get a scanner I'll send you some of my favorite pictures of my mother and father. Isn't it wonderful that we have things like photos to remind us of our loved ones though some of the feelings are definitely bittersweet.
I just found pictures of two of my father's brothers since the move. I think they were the last ones taken of each of them. It has made me think a lot of them lately. The younger one died when he was in his early teens. The older one is pictured in uniform and he is still MIA. Since the Russians have opened some of the archives, I keep meaning to contact the German Red Cross to see if they have any new information on him and their half-brother, also MIA. It would perhaps close a chapter for us. My grandmother and father looked for them for years without results. I'd like to know what happened. I know Gerhard, the one whose picture I have, still came to see me after I was born. I don't know about Ulrich. He was married.
Many hugs to you and your mom.
(((Eve))) Enjoy those good moments and get through the bad as best you can. I can't even imagine how sad it really is.
I have watched people slowly disintergrate... but nobody I have really loved. My granny died quickly, within weeks of being diagnosed with cancer. It was hard but a different kind of hard.
Hugs, Eve. I can't even begin to imagine how difficult it is. What a sad time.
It's hard to watch anyone(especially a loved one) detiorate like that. I worked in the kitchen of a nursing home for 10 years and it was difficult to watch some of the recidents decline of health. We were told not to get attached.(yeah right, I'm not made of stone)We tried to keep residents busy with enjoyable activities. In the summer a group would be taken on a picnic at a local petting zoo, some of the others that did not go the picnic would be taken outside to eat on the patio, we had an indoor pool, a library, a craftroom. We would have a birthday party once a month for everyone, with the residents that had a birthday that month at a head table. There is a large screen tv in a lounge upstairs. They have movie night twice a week and bingo. The are a lot of seating areas outside. There used to be a bowling alley inside but they got rid of it when they were doing some renovations and expansions. The special wing for Alzheimers have doors that lock and the only way to open them is with a code.
This nursing home also had apartments for seniors that still wanted their indepence but also knew that nursing staff were close by if needed. Both my grandmother and aunt lived in the apartments before moving into residence.
Poor Eve. It must be so tough. My DH's mother has senile dementia, but very early stages. She gets confused and takes forever to tell you anything. You are wonderful to be looking after your mum the way you do.
I'm really okay - now. I'm not saying that there aren't days of deep despair (look for especially manic episodes from me as a hint), but right now, today, it's okay. I also have to admit that I wouldn't have allowed anyone else to take care of her - my mother and I are very close.
Yes, you can see what a lovely Irish lass she was - her father was full-blooded Irish, although 2nd generation American born. It's no wonder that my father fell in love with her.
And Scott - I would choose being unconcious in hospice for three weeks over this any time.
Toni - aren't you supposed to be writing? :)
Oh hello Siobhan - you posted in at the same time I did. Early stages are the worse, in my opinion, because the person is still there most of the time. It's the real rollercoaster ride - back and forth. At least by now I've already said goodbye to my mother.
Christa - I meant to say that there is a place near here like that. We've been looking into for the inevitability that she will be in a home someday (if she doesn't have another, stronger stroke which kills her). They even have cats on the premises which we really like.
Ruby - you need to look for your uncles - closure is important. That's something you can do a lot of on the computer.
Oh Eve, my heart is breaking right along with you. When I moved back to Dallas in 2000, my grandmother was still living in the present day but she was loosing her ability to care for herself. It was at that same time she went to live with her daughter, my Aunt Marla, in Austin. Over the next 2 1/2 years she slowly but surely began to fade away. At first she would speak of those of her generation, some already past on, as if she had just seen them or talked with them. Then when I would call to visit with her, she had difficulty remembering the great-children's names. I could tell this really bothered her. And then she was moved to my Uncle Charlie's down in Port Aransas. By then, when I would called, I wasn't allowed to talk with her because "it was too upsetting" for her because she wouldn't know who I was. That broke my heart. I was close to my grandmother, closer to her than my own parents. She died September 10, 2002, 18 days before my wedding to DH. September will always be a bittersweet month for me.
Oh Susie - that's what we've tried to put off by keeping her here. A lot of people just can't do that and the decisions are so hard to make. Moving them, disrupting their routines speeds the disease on - but your family did what it had to do. If I had been married, with children, then we would have had to do the same thing. Mother is forgetting names. or confusing one name for another, but so far she still knows who we all are.
The most difficult part for me was not being able to talk with my grandma. When she finally passed on I had already grieved her presence in my life. I can only imagine what it most be like for her. You once said to me that at least she would still know you in the end because you were her caregiver. I know how much this means to you to be able to be with her during this period in her life.
But she won't know me at the end - I'll just be the last person she forgets. I cannot imagine what it will be like to have her look at me and not know who I am. Actually, I try not to imagine it.
I don't blame my aunt and uncle for doing what they thought best for my grandmother, I would have done the same had I been in their positions. I can say that now that time has passed but at the time I was angry and hurt.
They did the only thing they could. Like I said, other circumstances I might not have been able to do it. I would never recommend bringing an Alzheimer's patient into a home with young children. The wife/mother has too much on her hands already. I've read a lot of horror stories about people (usually the wife, no matter who's relative it is)trying to work full time, take care of their family and then taking care of an Alzheimer's patient.
Eve, as painful as it must be to share these feelings, thank you for doing so. It makes us all a little stronger to feel those thoughts inside you.
Thank you Jason.
Hugs, Eve. I know exactly where you're coming from as Parkinson's has an effect on mental processes, too. You're doing a fabulous job. My hat goes off to you.
Oh, Eve, my heart nearly broke when I read your post. How very sad. Stay strong. I know that your mother knows what you are doing for her - and that she loves you for it. :-)
Kate - the first person I knew with Alzheimer's-like dementia had Parkinson's, so I know that it is similar. (((Kate)))
Melissa - thank you. I don't think about how hard it is most of the time, just gets to me at odd moments.
I promise, more uplifting stuff tomorrow - honest.
Your mother was a beauty. Eve, you have my sympathy. How sad this is.
HUGS TO YOU.
Oh Eve. My heart aches for you and your mom. Such a horribly unfair disease Alzheimer's is. But I find myself encouraged that you can write about it and share the experiences rather than keeping your emotions bottled inside. Be sure to take strength from your friends when you need it.
Oh believe me Meretta, I do draw strength from my friends. I've also found that it doesn't do anyone any good to keep stuff in.
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