Talking to others helps

gizmolove · 12-01-2003, 03:36 AM

Hi All,

Nice to be part of this message board. I don't think others who are not going through Alzheimer's or Dementia in their lives realize just how very important it is to talk to others who are gong thru the same things. It's all so confusing and really lonely to be going thru this insane journey alone without others who know what you are going through.

We talk about how hard it is to deal with someone we love with Alzheimer's but mostly we know what the others there are going through and we understand and can share stories that help.

Don't get me wrong, my mom has been gone now for 5 years and I had no one to talk to while I was going through all the "crazy years". But, just because my mom is gone now doesn't mean that I don't still need someone to talk to about all the stuff I went through in her lifetime. And, I find that sometimes what I know (because I've been there as it were), that allows me to help others, which in turn helps heal me and the pain that I still deal with from this awful disease.

If you are going through Alzheimer's with a loved one, please think about joining a local Alzheimer's support group. It sure helps to talk to others that know and understand what it's like to deal with this disease. You not only can vent with people that understand; but, you can also get coping ideas too.

If you have a computer then, be part of our message board community. There are many people here that have great wisdom about what it's like on a first hand basis, (to go through this journey with Alzheimer's Disease). They not only let people vent their frustrations; but, also offer a sounding board to get other people's ideas or suggestions that can help make coping with this awful disease a lot easier.

Whatever resources you find to help support you and your family on this journey, the plain and simple fact is that you need to reach out to others for help. The old saying really holds true. "No man (or woman) is an island", and no person should (nor could), handle this awful disease alone. Get your support groups together. Reach out for resources and information. Take care of yourself so that you can take care of the one you love.

God Bless,

Giz

bzist3 · 12-05-2003, 03:53 AM

gizmolove, i dont know if your message was to me or to all of us, but thanks. i know talking helps and that is what i am looking for. my firends are good, but they dont understand, and i am afraid my venting will get to them at times. my mom doesnt have alzheimers but she is getting senile and we get very frustrated with the aging process. my 2 teenagers still at home need someone to vent to.

camachinist · 12-05-2003, 09:37 PM

my mom doesnt have alzheimers but she is getting senile and we get very frustrated with the aging process.

Perhaps you can expand upon this. Before my mom's stroke and vascular dementia dx, I thought the changes in her over the last few years were just "getting old". I now know, from my interactions with our AD research center, that any significant loss of memory or cognitive function is not "normal" and should be investigated. Simple vitamin deficiencies, blood pressure and/or thyroid problems can affect mental acuity markedly.

The earlier the issue is investigated, the better the opportunity for a good outcome, no matter the age of the patient.

On topic, I concur that very few people who are not care-partners for an AD/dementia patient can understand what we go through. Not even medical professionals. I would not wish the challenge upon even the worst of my enemies.

But, this is life and sometimes we have to make lemonade. I like mine a little sweet

Pat

Edited for clarity...

gizmolove · 12-06-2003, 11:18 AM

Hi Bzist,

yes, my message was to you. Unfortunately you worded your post in a way that I could not respond directly. But, I wanted to tell you that you are not alone. My mom has been gone now for 5 years. And, I still need someone to talk to about the hell that I went thru with her and her disease. There are few that understand what I am saying. Friends mean well, but unless you have gone thru what I have gone thru, there is just no way that you will understand what I am trying so hard to say. Or, what I mean.

I meet a friend of mine that I hadn't seen in 16 years. We went to lunch to catch up on old times. I tried roughly to talk about all the things that had happened in the past 16 years. It was months and months before I heard from her again. She thought that I had become a rather defeated, bitter ugly woman, and she didn't really like my company or want to continue our friendship because of my excess baggage. We spoke sometimes after that and after a few years she realised that I am not that person (all the time), just when I need to vent or when I need to catch up people on the last 15 years of my life. (Hee hee.) And, heaven knows that she had seen her share of problems too in the last few decades. Her son, sister, husband and nease and nephew all had died in the space of just a few years. Yet she was alive and vibrant and I was as limp and as flat as an old pillow. She just could not understand how I had gone through so little (compared to her), yet; I was barely copeing with life and she was still bounceing around and planning for a glorious optimistic future?

Yes, people need to talk. And, it is also true that people just don't understand. Even in chat the other night, I mentioned that I was "down" the other day, and my chat friend said, "Now Giz, just stop it, you did the best you could and your mom knew that you loved her and that she could count on you". I had to tell her that "No", she didn't understand, it wasn't that. I was not "blameing" myself so much. After all, I know what I need to feel guilty about and what I don't. I do have balance in that area. It's just that my mom went thru so much. So much pain. So much suffering. So much loss. And I didnt' know enough to (or how to) make it better. I didn't know then. I do know now. But, now it's too late. I don't blame my self so much as I blame all the others that should have known. Should have been there. Should have helped. But didn't help either of us. (You see, she wasn't even diagnosed with AD until she was so bad, so out of control. Not until the last 6 months of her life.). I blame the doctor who let her hip disolve for 15 years and only wanted her to receive asprin for the pain and then wouldn't treat her for a simple cold and let her die. (Any wonder why the words, "Don't worry dear, your mom is in a better place now", just grate on me like fingernails on a blackboard, and I want to just get up and punch that person in the face? I cry over the NH she was in that promised to help heal the sores on her feet so that she could walk again and not be bed-ridden for that rest of her life. I blame them for doing just the opposite of what they promised and takeing her off mental health drugs and makeing her worse and getting her incontenent because they were too lazy to take her to the bathroom. They discharged her 7 months later, permently incontenent, bed-ridden, and quite phycotic and impossiable for me our anyone (5 nursing homes turned her down for care at that point), to care for. Oh, the list goes on and on and on, there are so many many things that I could say, so much to list, so much loss, pain, so much hell.

I've been posting on line ever sence my dear mom died. The main reason is that it's just funny that you are a different person the day after a loved one dies than you are the day before. Funny how that death puts you in so much prospective. It takes their death to finally get you into THEIR shoes. You can not walk on their path. See what they saw. Hear what they heard. Feel what they felt. And, THAT; never leaves you, never again. You are permanently changed. Permently altered. People on a few message boards say, "Giz, you speak with so much heart, with so much empathy, sympathy and understanding of what it's like to have Alzheimer's. What it's like to see things throught the eyes' of someone with this illness, these limitations. You have so much compassion, so much heart". Yea, well. Maybe I do. But it's not a blessing. It's just something that I got the day my mom died and I was able to walk in HER shoes instead of feeling sorry for me in mine. THe pain in the butt she was. How she was an out of control train wreck just waiting to happen. How she ran me around by the nose and never let me have a moments peace. Well, all that changed with her death, now didn't it? It was no longer poor inconvienced little Giz! Was it? Now, at last I looked back at myself from inside her casket and I didn't like what I saw very much. But, I also saw someone who I loved and who just didn't understand how Alzheimer's had distroyed both our lives for over 20 years. I didn't understand then, but I do now. And even yet today, I am still asking why? Why didn't I know? Why didn't I see? Why didn't someone tell me it was Alzheimer's, and what Alzheimer's is? Why ALL THOSE WASTED, UNHAPPY YEARS?

But, people don't get it. And why should they? They don't walk in you shoes or in mine. But, we still, all need, someone to talk to. Some place safe to go and vent. So, honey,,,,,,just blab your heart out. It's safe here. You are among friends here. WE won't judge, or second guess you. We won't think the worst of you. We won't be-little or shame you. You have the right to feel the way you do, and this is a perfect place to let it all out. Besides, you may find out things from others who are going thru the same things themselves, that may help you. That is what is so great about these message boards. You can say what you please, and find someone who will listen. Often times just knowing that you are not alone is all the help that you really need.

God Bless, in your journey,
Giz

katrinak · 12-07-2003, 02:42 AM

Hi All, and Hi to Giz,
well, my mom (79 yo), my sister and I are at the point of trying to decide if my dad has hit the infamous "end stage" and if so, what to do next.
The story is too long to tell in detail - but quickly, my dad has taken a deep turn for the worse after having a vertebral-plasty (sp?) for a cracked T-12 vertebrae performed under general anesthia - and is exhibiting all the signs and symptoms of "end of life." But the doc keeps saying that he will recover and be able to go to a "memory care" facility - which I think is malicious wishful thinking. He is in the hospital, going on two weeks, is refusing food and drink, is incontinent, has not walked or been up in two weeks, has been sedated because of desires to wander and combativeness, is unable to carry out a complete sentence, has visions and delusions, and yet, hugged me today, then asked to God to let him die die die die...as he cried out his request over and over. He has lost over 40 pounds in the last three months...

so? do we opt for hospice? my mom can't take care of him at home...i am the classic sandwicher...with a fulltime job while my husband is a stay at home dad. what do we do?

any thots are greatly appreciated!
blessings to all,
katrina k