I keep lurking here, and I sometimes feel I am in the wrong place. So many of you have such a hard time with your LO's, and I can't even begin to offer help. I plan on still lurking, just wanted to let you know where I am.

On another subject, do you see your loved one in the face of a stranger??? Today I swear I saw 3 old men with handlebar moustaches, cowboy hats, and boots. They just required a second look from me to verify it was not my dad. They reminded me of him so much. You can tell I am a daddys girl
I never see my mom in anyone, then again she was unique, her style of doing things was her and her alone.

Jeannine

This question has caused me to really think about taking on the role of 24/7 caregiver again. I nearly lost my mind and to some degree my health while caring for Mom. Like a lot of people here most of my family are not the best so deciding not to be a caregiver for them is easy.

When it comes to caring for my sister, I think I would. If I ever get married again I would care for my husband. This took a lot out of me thinking through this very difficult question. When my caregiving days ended I said I will never be a caregiver again. Distance has a way of making you see things differently. That is how I feel about it right now.

Vicki

Sugarlips

Jeanne, I have friends whos son is a mongoloyd.They are going through the same thoughts.The life span of one affected by this is not to exceed 20 years.He is 28 years old.They are both 65 years old.They have put asside funds for his care if he should out live them.They do qualify for many of the programs in our area.Their worst fear is the thought of him being placed in an institution.

Everyone here has been through so much. When I had my strokes I let all of my kids know that if it did lead to demensia I was to be put in an NH and then because one of my daughters would (out of guilt) try to care for me when she already has a multiple handicapped child I knew I needed to give my second oldest more power. So I wrote a letter of instructions and in no uncertain terms so there can be no mistakes that these are my wishes.
I want my kids to have a life easier than mine and I have worked in long term care so I know that it would be the best place for me.
Angel hugs
Jan

As a man thinketh, so is he.
Proverbs 23:7

I'm glad I posted this. You've all given me some really good insights. Not intending to close this topic since there have to be other cgs-present and former-who have strong feelings about this, I have been thinking about this more and just want to add to what I said.
No doubt part of my feelings has to do with losing both my parents this year while still being a cg for my partner. How do you even think about rebuilding your life when you're still a cg? And I still have plenty of stress from never knowing what's going to happen. Jeannine, as you said about your son, I live every day knowing the doctors don't give Debbie a good prognosis at all-she has outlived their expectations many times. And while I can take care of her now, there will come a time when a NH may be the only option. If you email me, I would be happy to talk more to you about that since it's obviously on your mind as much asit is mine.
Janie, I have jewelry coming out my ears. I don't know why I didn't consider yoursolution, but I love it. Debbie and I are heading to the NH my parents were in today. I"m finally ready to face those ghosts. We need to see some residents and staff we became close to-I just haven't been able to do that, but I want to see them now. I'll discuss your solution wiht them as a possible Christmas idea. Thank you. BTW, I talk out loud, while I'm driving , to my parents vs. your writing it down. People may think I'm nuts, but itworks for me.
May, it would have been easier for me,too if there had been more funds available to hire help. I do agree that cging makes one strong and I've learned a lot from the experience.As hard as it was(understatement of the century) I know I'd do it all over again for my parents. Just dont' want to have to. I have a former mil who someday may need help. She recently got divorced and was talking to me about me being her POA. I told her if she ever needed help I'd be there. Cold chills ran down myspine when I realized what I'd said. FAct is, right now I don't think I could even if I didn't have Debbie to care for. She's young still, but if she does need help twenty years down the road will I be up to the challenge? I honestly don't know.
Only person I have who even possibly could care for me at home someday would be my niece. After watching what I went through she kindly but firmly declined to take care of anyone-ever. No, I didn't ask her to. She just told me that one day. I'm sure my parents never expected things to get as rough as they did. They were incapable of seeing the reality. That's why I wouldn't expect my niece tocare for me at home-things can go from manageable to rough quickly. If I put myself away no one ever has to feel guilty for not taking care of me at home and then get into a horribly difficult position later.
This post is quite long enough so to EA,Kathie and Yellow Rose thank you also for your insightful responses.
Anyone else have any feelings about all this?

"Whatever tomorrow brings, I"ll be there-with open arms and open eyes"

Melissa, If I were faced with it again...and had a choice...I would NEVER be a 24/7 caregiver again!the only exceptions I could see to this is if it were my son Heath or my niece Haeli.The toll it has taken on my health, well being , and my life is too steep.I feel as is I have no life of my own right now, and it has been that way for years.I love my Mother, but when dealing with someone who is so negative, and won't help themselves , by following any of the suggestions the doctors or family make, makes it so frustrating. The first sign of any kind of Ad or any kind of debilitating disease for myself , I'm going to check myself into a home. Even if it was the worst one in the world, I would go , because I would NEVER put anyone else in my family through this, for any reason what so ever.I hate to say it...but if I couldn't get myself into a home, I'm afraid , I would find a way to take my own life. I would just never ever ask anyone to go through this for me.This sounds drastic, and I'm not suggesting anyone else should do this, by any means. That's just the truth about how I feel about what I would do for myself.

Love, Kathie, k.c.allyn@att.net The journey of a thousand miles...begins with a single step. Confucius

As most of you know, when my dad passed away, my caregiving went back to just my disabled son, so my caregiving will be with me until ????.
In our family the care of our son is the prominent thought, he is turning 38 next month. When we settled his lawsuit, they told us the average lifespan for a person after suffering his disablility was 20 years. Well it will be 20 years in 2004. He is still with us and very healthy, now sooner or later we will not be able to care for him at home, that is the one big thought that gets me sad.
He is mentally more alert than I am, but where do you send a totally paralysed person, not the average nursing home, but where????
As for myself or my husband, my two girls have told me, they are sorry, but for sure their dad will have to go to a home. As for me, depending on my problem one of them could have me live with them, but they admit it may be a nursing home for me also.
In our household it is a complex problem, if hubby or I have to be cared for, then what happens to our son??
Sorry for the downside, but this is one fact hubby and I want to discuss this Christmas, both families will be here and we need to talk about what do they want to do with Brother, Dad or Me if we need caregiving.

Jeannin

Melissa, If I make it through this I hope I am never faced with it again.I am not saying I would never do it as I have children and you never know what can happen.Maybe thefact tat I have 3 and they are all at a bad time in their individual problems.If my options were more to my liking I would have done things different.If I was able to afford someone to assist me half of the time that would have made the burden less.I have don this because of the love and respect for my family members.I was not prepared for this to slap me in te face all at once.The one positive that has ome out of this is my eyes were opened to the fact that so many are becoming caregivers.The stress and pain that you feel when you read the posts.You know this is only a small majority of people that are caring all over the world.It is mind boggling to me to read the pain , the strength and the courage that is represented here.To be honest, If this had not hit home, I do not think I would have payed that much attn. to the plight of so many . I prayed to god that this is not what is the ending for me.I do not want to put my children through this I want and will control my destiny if I should discover I am afflicted with dementia of any kind.Maybe, tHE FACT THAT i HAVE 3 HAS CAST A SHADOW OVER MY THINKING.

Back in the late 70's and early 80's I worked as a caregiver. I did nursing home care first then moved on to in home care. I even did live in work. I became very involved with several clients. You know you just can't fake caring. My last client I was even more emotionally attached to than usual, even for me.

I switched my jobs and for many years was into raising family and being knowledgable in the pet industry. Then after many years came Milly and I became her full time caregiver. It was not something I searched out to do. Now Milly is gone and for a little bit after Milly was gone I thought of re-entering the caregiver role in a paying job. For me I have discovered that I need a break inbetween. It is as imposrtant to me that I survive and continue with life during and after caregiving.

I am a caregiver, that will never ever change. The role of caregiver takes much out of us. More is taken out of us due to the lack of support, skill building and education of caring for someone at home. Even for those of us with experience, caring for another, without taking precautions for assuring our own health and well being can be harmful to us. I know that somewhere in my future I will need to care for another. I am taking the time now to take care of myself, prepoare for my future and take a break from the role of caregiving (or at least 24/7 caregiving). It is the only way I will have half a chance of surviving because I am not always the best caregiver for me.

As far if I need my children to choose how to care for me, I do hope that I can be cared for at least some of the time in the bossom of my family. However not at certain cost. I love my children and grandchildren. I do not want to put their marriages at stake. I do not want them to scarfice their health or mental well being for my care. I know my care, no matter what care plan they choose, will be a strain and stress but it does not have to be a destroying care. Caring for others should never be so harmful that they give up their well being.

Edyth Ann aka Bubblehead aka Queen Bubble
AOL IM EdythAnn12
edythann@netzero.net

Melissa, first may I say how sorry I am that you are so worn out. And beacuse this is my second time around with AD love one I am not as noble as I was the first time around. We all have an agreement, in our family now ,that if I get AD I am to be put in a nursing home. I have it in writing and put with my will. I don't want my kids to go through all this. But because I am a "second timer" I'll take one day at a time realizing I am not noble but I do love my mother and some how I'll make it. Please go outside look up into the sky, take a deep breath, and know you will make it also. I'm praying for you, girl!

Melissa, I too hope that "if" I find myself in a bad situation that I will have the mind, the common sense and the funds to check myself in somewhere. Who knows what the future holds ... even for tomorrow?

Had a horrible night last night ... well, emotionally. Hubby and I had gone over to his Mom's house to help her sort through and get rid of some of her stuff before she moves into the retirement home.

She had some beautiful jewelry, jewelry boxes, etc. that she wanted me to have. It reminded me so much of the stuff my Mother had. After Mother died, I kept a few pieces of her things and then donated the rest of it to the NH Daddy was in. It was heart-warming to walk the halls of the NH and see a piece of Mother's jewelry on the ladies.

However, the "act" of going through an elderly person's things must have hit my sub-conscious pretty badly. Didn't realize it until later last evening. I started getting very sad (weepy) and was trying to figure out what was "wrong" with me.

Normally when I get these "indistinguishable" (sp?) feelings, I sit down and "write things down." What came out next really surprised me. I wound up writing a letter to my Daddy!

"Daddy ... I still love you so much. I miss you, Daddy. Do you know where I am? Do you know how I think of you? And how often? Will I ever see you again? Are you OK? Mother OK, too? I hope you are happy! I truly love you and I miss you terribly!

Wow .... when does it end.

~ Janie ~

.............

Simple enough question here but the answers may not be as simple. How many of the former cgs here would voluntarily do 24/7 caregiving again for anyone if you felt you had any other options whatsoever? Are there any circumstances you can think of that would change your mind? Finally, if you found out yu had AD tomorrow(God forbid) what would you hope your family would do to care for you?

Me? It's hard to imagine not being a cg to someone at this point, but if I'm ever not I don't ever, NEVER want to do it again. Had enough. Burned-out. Thank yu for applying but please try another lifetime. And if I ever am diagnosed with AD, or any other illnesses requiring round the clock care, I intend to check myself into the closest NH. Maybe I'll feel differently about all this some day, but for now that's where I'm at.

"Whatever tomorrow brings, I"ll be there-with open arms and open eyes"

Jeannine, glad to hear everything is getting back in order.

I'm happy you've continued to stay with us, even after the loss of your Dad. It's obvious you have a lot of experience to share with the others.



~ Janie ~

.............

I see exactly what you see. Glad my Hubby doesn't come here and see that.

He had his 3rd Hernia repair, this time by a surgeon specializing in Hernias, and new scar, new tummy look, but his feelings are coming back. I think you know what feelings I am talking about????

At 65 the old man is still kicking

Jeannine

I see what you mean Janie!

But...you really gotta be looking for it!

Hmmmmm......

"Whatever tomorrow brings, I"ll be there-with open arms and open eyes"

Jeannine, when I look at your kitty avatar ... I see, of course, the kitty. BUT (and here's the cool part) ....... when I move my eyes slightly to the right of the avatar, I see something that looks like a "mirror" image or else a couple smooching.

PLEASE, tell me you see that, too?




~ Janie ~

.............

Jeannine,
When you are a caregiver there are so many stages to go through during this process. At times you feel like you can give someone advise and at times you feel like you can't. When you are at the place where you just want to read and feel part of the group, that is fine. Our goal here is to meet the needs of our forum members. You will feel like responding to others posts at another time. Until then, just read and jump in when you feel like it.

Vicki

Sugarlips

What about the frazzle face, my favorite(I think that's the same as the you gotta be kidding me face),the bear,heart, rose,tissues,champagne glass.Oh... change is so hard.

Love, Kathie, k.c.allyn@att.net<br />The journey of a thousand miles...begins with a single step.<br />Confucius

Am "I" the only one who's gonna miss our beautiful blue butterfly? AND, our "YOU'VE GOTTA BE KIDDING ME" face?

"Little Janie"

~ Janie ~

.............

Melissa, I loved getting to know more about your Dad. And don't you EVER think that you can't talk about him, as much as you want to. I read what you posted with a smile on my face.

Memories .........

PS - My Mother had green eyes. They were quite a lovely couple.