Caregiving

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Hi APC ! I was just reading your post and thought oh boy how many times ive felt like just running away too!Only problem is i would have to take myself with me lol! I know what you mean about being sooooo scared i think it comes with the whole package!If someone had told me 5 yrs ago that i would be in this situation i would have said"No way i would never be able to handle that"!But here i am handling it the best i can and still trying to hang on to my sanity which trust me is no easy task somedays! You have your friends and you have your faith and now you have all of us!.....so vent away and sometimes we will vent right back at yah and will all somehow find our way together...........Gina
 
Cherie Grandchildren are the best medicine!My husband has often said that his Granchildren are what keeps him going!We have a 2 yr. old grandaughter that he sees almost dayly and she is just so cute and funny.!Our oldest grandson is 9 and the only time my husband leaves the house now is to go to his hockey games.The last time we went to one of his games my daughter in law placed our youngest grandaughter 2months old in his lap in the wheelchair.She slept the whole time and he just stared down at her beautifull little face......so i guess what i am trying to say is yes,yes,yes!To Grandchildren........! p.s now if i could just get them to quit hiding stuff and moving it around so i cant find it !
 
Hey Mark

Hey Mark,wanted to say hello and how are you doing today? I know everyday for us things change,its like a roller coaster ride never know whats going to happen next...Anyways I wanted to touch base and let you know your in my prayers...
 
Hey Cherie

Hi,
Christmas was very tough this year, for the first time in many years we had 5 of our 6 children with us, so that was very positive..... We all keep praying that Tammy will be with us for many more holiday seasons, but then reality sets in. OH GOD what did she do to deserve this awful disease. Watching her go down hill, I'm having one heck of a time with this. I started taking anti-depressants because I was crying all the time.... who says men are tough! So many of the e-mails I read on this forum, people seem so strong, where do they get their strength from?
Anyway how are you coping? Thanks so much for asking how I am. I must admit, although we have a caring loving family, I feel so alone and helpless at times.
Mark
 
Hey Mark,i know that your comment was to cherie but i just thought i would reassure you that what you are feeling is normal under the circumstances.Before i started back on antidepressents i was a mess...i had decided to go off them as i thought that i could cope without them....and then came my husbands diagnosed...and wow i was a mess.We are no stronger than you and we all have the same feelings of helplessness,anger,fear etc.Somedays i just want to run away!but as i said in an earlier post i would just have to take myself with me and that would be the problem!lol.specifaclly i would love to run away to where cherie is i used to live thier when i was a kid and for some reason now i just miss those mountains so much! Maybe it really is a wish to go back to happier times when life seemed so much easier!..I am so glad that the happy season is over and even though my kids and friends were all of comfort to me i still feel totally drained,i think just from the stress!Any way you hang in thier and come on the forum and hopefully together we can all give each other strength to carry on !prayers and hugs your way.....Gina
 
Thanks Gina,
You folks are all so helpfull. I do have good days but the bad ones are definitely more AND, Tammy is still fending for herself. If I could just have 1/2 the strengthshe has!
Mark
 
Since my darling dh/PAL died on Dec. 29th I have gone through the gamit of emotions from "how could this happen?" to "now he won't suffer anymore"......All the time I feel like crying inside if not on the outside but, you know, I've felt that way for a long time. Seeing him get progressiviely worse was so very hard.
We somehow get the strength to carry on with caregiving or living alone but no one ever said it would be easy. At least here on this board everyone understands.
 
Mark

Hi Mark,I feel like a mess for the most part there are some days I dont know if I am coming or going,I get angry,frusterated,and sad! I feel an assortment of feelings on a daily basis..The holidays were over whealming and I am honestly glad there over and done with,not to sound like a scrouge or anything,we had non stop visitors over and over again having to answer the same questions again and again! Because this diagnosed is fairly new as of dec 19th! Right now it feels so real I wonder if I will wake up from this? I can totally relate to that feeling of being alone even thouh there are family and friends around! But this forum is a great place I read alot of the stories here and they help me put some things into perspective...
 
I2c, I am so sorry to hear about your darling dh/PAL passing. Of all the times of the year for this to happen. I pray that somehow you can find peace in this situation.

To those who had a hard time with the holidays, I too find myself almost saying BAH HUMBUG.

I have 4 children and 16 Grandchildren, ranging in age from 5 months to 19 years old. Most of them came by for the holidays. WHEW!

My wife has always made it a practice of cooking for the whole family every Christmas. So there were kids everywhere, wrapping paper all over the house, noise, and then more noise. I was having a bad day with back pain and leg pain so I finally just went to bed for a little while until everyone wanted to know were Grandpa was. I came back into the living room dodging everyone's feet with my motorized wheelchair, using my little beep beep horn on the chair. And I made myself enjoy the family.

Through it all, part of me was wanting to go hide someplace, yet another part said this may be your last Christmas with them. Hang in there and love them while you can.

After some time almost everyone had left and one of my Granddaughters came over to me and said was it OK if she asked me some questions about the bible. I said sure go ahead. I had one of the most meaningful conversations I have ever had with her, or any of my grandchildren, just because I made myself available. I thank God for that opportunity to share some things with her and hopefully answer some of her questions. That made my Christmas.

It all goes back to what is the reason for the season for me. Celebrating the birth of Jesus and sharing the love of God with others.

We went through the whole holidays without anyone asking about my ALS. They just acted like everything was fine and normal? I guess they wanted to focus on the positive things about the holidays and I tried to help them do that.

God Bless
Capt AL
 
Hello to all,
I'm so grateful to everyone for "telling it like it is". In my situation, it's a bit different than you with spouses, that you have spent years loving, and now must (and of course want to) care for.
My friend, who I met about 5 years ago, just had been diagnosed. As he got worse, I got involved with a wonderful organization called eHope that organizes people to help someone with ALS. I wasn't CLOSE, just friends. However, during the last 6 months, I have completely come to Love him. I WANT TO LEARN to care for him, to be there for him, especially in the nights, when he tells me he lays awake, cold, and cannot wake his Mom who he lives with.......It makes me sick that a person should have to suffer so, to not be able to help themselves. My Jimmy has lost use of arms, legs, and his voice is very quiet.
We are naer the same age, me a little over 50, and he a little under 50.
His Mom takes good care of him, and he's grateful. But he isn't happy. He doesn't have much of a life. I so badly want to take him on, and try to give him the things he needs right now. Things like someone's full time attension and unconditional love; Music he loves (he was a drummer) Old pictures out where he can see them, etc.
So for me it isn't that I was not given a choice. I could turn and run. But no I can't because he is all I can think about!
So everything I read from you all helps me to understand what it's like. I wish I knew a lot more about everything- what to expect, how to help, how to cope with his emotions and mine, how long I'll have him, what it'll be like to lose him, oh so many questions.
Thanks to all for sharing, CF (Crystal)
 
Crystal, just read your post, and it really moved me. Oh God, I wish I knew where, or how to begin. Yours sounds like a story of love and compassion. God is watching after this man, he picked an angel to watch over him, and that angel is you.

I read in your post where you want to learn to care for him, God already gave you that grace. I am so sorry to hear about your friend. I was a caregiver to my son, I lost him 7 months ago to Als. If you have any questions, please feel free to ask. This forum is a great one, you will learn quite a bit as you go along. May God bless you both. Keep us posted.

Irma
 
Hi Irma, and thanks for your response. I hope to talk more with you. Sounds like your son was very lucky too, to have a loving Mom to care for him. It's heartbreaking to think about. I have such respect and compassion for my Jimmy's Mom, that she took on the huge job of caring for him. I know it's very hard on her, and him. She has a husband and they can't have the life they did.......Jim lives in their living room, and they had to move the couch out to put his hospital bed in. So none of them have privacy, and I can see the stress. She tells me if he wants to he can live with me, but there is a lot of preparation. First I am moving, as I live in an upstairs apartment, and of course he can't visit. Then, she says she doesn't think he is "up to" moving. I think it wouldn't be that hard on him. He seems depressed a lot when I visit him, but he soon cheers up, which makes me think he not only likes me to be with him, but that it would benifit his well-being.
He has aids that come in, from Hospice, to help with his care. Did you have that? I know it helps her, but for Jim's sake I feel sorry in a way. It's got to be humiliating for him to have strangers handling him. I want to do it all myself. I want to be close enough to know his needs when he can't say it any more.......
By the way, my oldest daughter's middle name is Irma. I've never known anyone else with that pretty name!
How are you doing now? How long did your son need your loving care? What is his name? Crystal
 
I got on anti-anxiety drugs shortly after the diagnosed of my husband and they really helped. I was afraid of the side effects so now I only take them when I am really bad--like the middle of the night or when work (we own our own biz that I had to take over) is overwhelming. I had anti depressants too, and I really liked them. they big problem wasnt the no downs, it was the no ups. so I stopped taking them after a few months after I was over the big shock. Of course I have considered going back on them and probably will in the next couple months as my husband goes downhill.

I am not telling anyone they should use drugs, but the stress and sadness and anxiety and heartbreak is in everyone's posts. Please, consider yourselves as well and talk with your doctor about if anti-anxiety or anti-depressants can help you cope.

I have to say I have felt very alone but after reading the posts here I realize that I am not alone. thank you all.
 
Good advice, Barbie. Nothing wrong with askinf for help when we need it! Cindy
 
Cindy and Cherie

Thanks so much for the encouragement. I know that I had posted on one of these. I just now found it. We got the diagnosed 1/14/07. Lower motor involvement. We were hoping that it would stay in the upper motot neurons. God had other plans. I know that I have put this information on other post. I guess I need to learn how to navigate this system. Now we are coming to grips with probably getting on long term disability and so on. He's struggling with that. I'm trying to help as well as I can. He's a very quiet person. But this disease has made us communicate better and more.
 
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