Hi. I'm new here. Hate to be here. Know you all understand.

My Mom and I have been dealing with her AZ for years. Today was my first day to visit her in almost 3 weeks. I normally spend 1 day a week shopping, eating out. She's in an assisted living. But I've been very sick so I missed 2 weekends and today was awful. She was really off her mark. I carried in fast food. She doesn't have it often and I still was not strong enough for the stress of taking her out. (She's like a 3 year old. Not bad but you really have to keep an eye on her. One day I stepped an isle away from her in a store and 5 minutes later caught her tearing open about 6 bags of socks! I have no idea why. I felt terrible but didn't pay (didn't have the $$) as I ushered her to the car. :( )

Well, it was like crazy day. She could not remember how to eat. She was trying to smash the french fries cardboard holder and all and eat it like a sandwich. When I finally got her to understand what that was and that she actually had a sandwich she started eating it with the paper still wrapped around it.

Then we got to the really fun part of the day. In her old papers she found love letters from my Dad. These were from 1946 - 1948. Mom's take on finding them? Someone at the AL is in love with her and she's engaged. She's concerned since she can't remember who she gave her hand to but his name is "William". She is going to try and figure out who he is so we can meet next week. :confused: I made a very gentle swipe at explaining who William was but she thinks I'm an idiot (in all things by the way) and she laughed at me. Of course she'd dated a man named William years ago but I didn't know him and this obviously wasn't the same man. Oye.

I was floored. That she has slid so far that she doesn't remember William was my Dad is not good. I wish I thought it had something to do with my being absent for 2 weekends but I have a dear friend she's known forever who "subbed" and took her out to dinner and a couple of yard sale and, quite frankly, she didn't know it had been 3 weekends since I'd been out there. I'm more concerned her drift down is me. That since I see her every week I didn't realize that she's on a faster path now.

My issue is the public part of this. If she had been out and eating that
way she was it would have been difficult. More stress to the event. I come home from a day with her beat. I work long hours Monday - Friday the usually an 8 hour exhausting one with her on Saturday. I live for Sunday.
I'm 50 and this is aging me like you wouldn't believe. I think I am in a small minority of people here and hope it doesn't anger people, but this disease can't move fast enough. I've been dealing with it 10 years in one way or another and I'm beat. I want my life back.

Okay, whine off. I'll go clean up the kitchen. Later.............

The New William's Future Step Daughter. ;)

I understand completely. I was in my late 40s when DH was diagnosed, and I'm now in my mid-50s. The constant problem-solving and stress just never quits. Our family still has years of this ahead of us, and it seems like an eternity. I sometimes think that by the time I get a life back, it will be time to die myself. Then I read one of Martha's postings, and it gives me a little hope.

I agree with the posters who have said that this disease is worse than cancer. This just goes on, and on and on, dehumanizing our loved ones.

I hear you loud and clear. This disease is hard to take. It brings out the best in us, and somethimes the worst. Once when I lived with Mom I had to go into the bedroom farthest away from the kitchen, where she had been acting particulary difficult, and scream. Yes - I yelled, "I can't do this! I can't take it any more!" I yelled and cried. I am sure people in the adjacent apartments heard me but I couldn't stop.

Later I went back to Mom and continued to converse as if nothing had happened.

I found life got way way easier when we didn't live together any more. Mom lived with my brother and SIL. They took her in (to save my sanity) for a few months, then she fell, broke a hip, and lived in a NH for the remaining 2 years of her long life (99). I also had that feeling that it cannot go fast enough - after they told us she was not processing food, not reacting to her heart meds, just wasting away - and yet that lasted from April to December of last year. Now, looking back, I am glad I had those few months - living far away I only visited her 2 or 3 times in that period, but now I am glad for the visits, however confused she was. Mom long ago forgot my dad. In her last stages she was a child and wanted her mother. When I mentioned my dad she said "who?"

It is hard, and you have every right to be frustrated at times. Try not to let it get you down. At least you don't have her 24/7.

Welcome to this place - I found a lot of help and support here.

Love,

Martha

I agree with the posters who have said that this disease is worse than cancer.


Hi Joy,
Welcome to the ALZ board.....you will find alot of support here, it is sad how many people are dealing with the same awful situation. I wish you much luck with your mother.....

The above statement I quoted just jumped out at me, as I see it often......
I come to this board in support of my 94 year old grandmother, who suffers from dementia. Who today has been screaming and sobbing all day, and yelling at the TV. I understand how horrible this illness is. I also in the last 5 years, have lost one uncle to a brain tumor, another to bowel cancer, and one a few weeks ago to lung cancer. I've had another uncle recovering from throat cancer, an aunt with lung cancer. My mother has gone through breast cancer twice, and we are anxiously awaiting results of a bonescan. Years ago, my aunt lost her 7 year old daughter to a brain tumor.
I just for some reason felt it necessary to remind everyone that illnesses are what they are, they are "all" frightening, scary, and all take away our loved ones. Cancer is still a very devastating illness, and it just jumps out at me to see things being described as "worse than cancer". If you've seen enough of it, believe me, it's just as bad. I wish I hadnt experienced so much that I could agree..... :(

Love, Carsam xo

I would also like to welcome you to the board. The first time I heard the statement "ALZ is worse than cancer" was from my Mom not long after her diagnosis with ALZ. She had breast cancer and won that fight. She explained to me that with cancer there was some hope. ALZ is terminal... always! You know the ending when you begin.

You Mom may have just been having a bad day. She may be up when you visit and just missed the moment this time. She may be getting worse quicker as well. My Dad was stable for a long time but it seems that recently he has lost so much so quickly. You might also have your Mom checked for a urinary tract infection. It can definitely cause bizzare behavior quickly. Have the urinalysis done and see what happens next week.

I truly understand the frustrations with taking your Mom out of Assisted Living and into the real world. Mom wants to go out but when she is out her inabilities bother even her. Then she refuses to leave AL while complaining that she never goes out. I was with Mom several days this week. I took her "shopping". She wanted to buy a frozen pizza (she has no oven) and melted into a sobbing mess. She could not decide between two pairs of shoes. She wondered aimlessly most of the time. When we got back to the car she bashed the car door into the car beside us with the lady sitting in it. The lady was very nice about it even though she had a ding in her door and the force of the hit scared her. It was obvious that I has having difficulties with Mom. I went to Mom's favorite place to eat and she refused to get out of the car. I went in and got her sandwich. We went back to AL and she ate mine and hers. I went by to see her today and we went to ice cream sunday and she did well but I heard her telling another resident a confabulated story. Each day is different with that heart ripping progression downward.

I totally agree that this disease can not move fast enough. I have watched my Dad slip away with Vascular Dementia for years. The last few months has been dramatic and I see his health failing as well. My Mom cared for Dad for years as well as her Mom with ALZ. She watched her sister die of ALZ. This is her worst nightmare come true and she has been depressed and aggitated since she realized she had it. She will tell you, as she sobs, that this is no way to live. Because I love my parents I wish for their suffering to end.

I hate that you have to go through this with your Mom. Know that you are not alone. I have found sanity here among those that truly understand. I will keep you and your Mom in my thoughts and prayers.

Love, deb

Carsam - I absolutely did not mean to say or infer that cancer is not a terrible way to die and your family has certainly had more than its fair share of tragedy. You're right, cancer is horrible. Cancer has always been viewed as the scariest, worst disease of all...which is there is so much grief in concluding that a death from cancer is preferable to a death from AD.

Many of us view cancer as the lesser of two evils since cancer does not steal your soul for 10 years or more. In a year, or two, or three (depending on treatment of course, and the type of cancer), the patient and family are set free with cancer. In 10 years of AD, your loved one may be aggressive or passive, trying to wander or in a wheelchair, able to swallow or on a feeding tube or wasting away, unable to recognize family members, incontinent, unable to talk, screaming, or speaking gibberish, home with 24 hour care or in a nursing home, etc. The family may be without assets, caregivers may be burned out and suffering from ill health themselves, and family members may no longer be talking to each other...the board is full of the results of the stresses of caregiving that just go on and on and on and on year after year. Terminal cancer is truly horrible, but it does have an end. AD seems endless.

You're right, each disease is horrendous. Perhaps a cancer patient would even trade cancer for AD in an imaginary world. What a horrible society we live in, when dying is so hard.

My father died of lung/liver cancer, and my mom died of Alzheimers.

The difference is, that just before he passed away my Dad was so lucid and bright that he called an old friend with whom he had had a serious break. He asked the guy to forgive him and told him he forgave him too (for whatever they had said or done many years before.) Then he felt at peace, closed his bright, shiny, alert eyes, and died.

My mother didn't know anything she had said or done years ago or just now. She had no light in her eyes, just a blank stare. She was not in any pain (this makes a big difference) but was also not connected to anyone. She was alone in her strange world.

Maybe there is no 'better' or 'worse' ... maybe for the patient, no pain but no mind is better, and for the famiy 'pain but right mind' is better. I hope I never have to find out.

Love,

Martha

Joy,
Welcome to the board and I'm so glad you're here. Believe me when I say you are not along in wishing this horrible disease move quickly. I'm married to the love of my life and he's 4+ yrs into it (56 yrs old) and there are days I'm so sad that I don't think I can bear it any more. Then i get home from work and he's SO glad to see me and I just melt. I too can no longer take him places as lately he has become more unpredictable but I've just chalked that up to the disease and move on. I'm bringing him home today from a 5 day hospital eval as his anxiety level had increased so I gotta run for now. So glad you're here and keep in touch...
Love Janie

Morning ladies.....
I apologize if my message came across the wrong way yesterday, I did not mean it to be "defensive".....I just dont think it's right to compare "pain". Yes, there are things that are "different" and more difficult with each different illness, it just strikes something in me to hear anything is "worse than cancer".
I also dont just come here full of knowledge of cancer, my family has been ripped apart by dementia. My relatives no longer speak, my uncle is my grandmother's caregiver and yes, he describes it as a living "hell" and I truly believe him. I know what this illness does to someone, I've researched it, and I've seen what it does to people. It's horrific I completely agree, and the worst part is that it can drag on for so long, heartbreaking for the person who suffers from it and devastating for those caring for them. Yes, cancer does end more "quickly", when someone is diagnosed as terminal. We still though live and breathe it all the time. Every time my mom feels a pain, she's frightened to death, because of the thought of it returning. We wait, wait for test results constantly..nerves wrecked, wondering if the doctor is going to tell us something that is going to devastate our lives. There is no "peace" when you've had cancer. You are "afraid" all the time. What a ridiculous way to live also.
On another note, yesterday I found out that one of my co-workers died suddenly of a massive heart attack....I believe he was in his early 40's and had 3 young children. Drawn out death is hideous, sudden death also breaks my heart. Breaks my heart for his wife, who has 3 little kids now to raise alone, who never knew a trip to the cottage would be her last day with her husband. How do you go on in life when there are all of these things that can rip your life apart?
I just wanted to say thank God for this board, because no matter what you suffer from, it's "hard".....life is "hard"......I should be thankful for my life today....but just am feeling hesitant to look to "tomorrow"........

Today Grandma is sobbing uncontrollable and wanting to know where her "babies" have gone. Two of them have been lost to cancer.....the rest are off arguing about who's turn it is to have to spend an "hour" with her. Her one son who cares for her is nearing the end of being able to care for her, as he is losing his own mind. And my mom....when she gets her results of her bonescan, that hopefully nothing has "returned", will book a flight and travel to help in this nightmare......

Love to you all,
Carsam xo

Carsam -

I hope you have lots of people in your life that can give you hugs. Having seen so much unhappiness and pain, you are certainly have a thorough understanding of how difficult these illnesses are.

Clearly, there are very strong emotional and religious issues involved whenever talking about terminal illness, but I wish someone would give me the right to exercise a vote on right to die issues -- not just on right to life issues. I wonder if this is an issue like cremation. Years ago, many religions frowned on cremation. A priest once explained to me that cremation was prohibited since the Bible referred to "dust to dust." I guess ashes weren't considered to be dust. As the cost of a funeral increased and cemetary space in many parts of the world became less available, cremation has become more acceptable. As resources become scarcer in this world, will society begin to view end-of-life issues differently? I do know that my feelings about end-of-life issues are changing dramatically. I never would have believed that our family would want DH's illness to progress as fast as possible...a time comes, though, when you do pray for the final peace to come quickly, for the patient as well as for the family.

I never would have believed that our family would want DH's illness to progress as fast as possible...a time comes, though, when you do pray for the final peace to come quickly, for the patient as well as for the family.

Dear Beginning, thank you for your message. I couldnt agree with you more on this statement. It's a very sad one, one only people who have been through so much of this struggle could understand. My grandmother had 10 children, and has 37 grandchildren. I am the one closest to her, and it breaks my heart to say I have shared the same thought. I think of ending her suffering, of giving some "life" back to my uncle....and to see a smile on my mom's face again. You know it's funny, of all the illnesses I've watched people endure......dementia has changed my feelings of "not wanting to die" to, not wanting to "get old". I totally agree we are changing our ways of thinking for this time in our lives.....

Thanks for listening....
Carsam:angel::angel::angel:

Welcome, MyJoyAsa!

I am fairly new here myself, and let me tell you, these posters are a lifesaver! They have kept me together when all seemed lost. Welcome! Kick off your shoes and stay a while - read the other posts and threads, and you will gain a wealth of knowledge.

Doesn't sound like your mom is doing anything we haven't all tragically seen before with our own loved ones. You know what I would like to know? What are the AZ patients thinking? I try to ask my daddy what's going through his mind (I am only and full time caretaker besides being wife/mother), and he has zero answer. Why does my dad shred all kleenex? Why does he tear every paper napkin in half?

All silliness aside, I feel for you. I know how incredibly hard it is to watch this happen to your mother. I watched my mother go through the same thing exactly- my dad lived with her (58 years married), and she would tell me of her new boyfriend that she had moved in with. I told her that I was totally happy for her. Love is grand. Dad just smiled. Mom passed 9/04, and now daddy is failing rapidly. This disease is awful.

So, try to enjoy every good moment you have with her. That's what I'm doing with my dad, and leaving the rest up to God.

Come back often. This board is a wonderful place to hang out. I wish you peace.

deb

First, thank you all for the kind welcome. I've read all of the responses and will be posting some thoughts.

The cancer/AZ issue - My father died of cancer and it was like a condensed death. A lot of pain for him. It was over in a year. My mother will die of AZ one way or the other. She is 100% in denial. It's like her death is watered down and the pain is more for me.

I am hoping for the massive heart attack, after a nice meal cooked by the handsome young man my husband and I have hired to help with things around the house. Hubby and I will be on the couch. He will be telling me stories
(probably ones I've heard 10 times before but I love listening to him talk) while I watch the handsome young man (tight jeans, nicely worn t) clear away the dishes and tidy the kitchen. I will drift off.

That's not too much to ask for is it? But with cancer rampant on my Dad's side and now 3 member of my Mom's family have AZ, I suspect it's just a dream. But, then again, if the AZ gets me, maybe I'll be there in my mind anyway. Know what I mean?

Thanks all!