Caregiving

[landscape]

Caregiving has been a task full of love, tears, stress, sleepless nights and continual surprises about the strength of my husband’s spirit. I am so proud of him. Now that he is at peace I wish all caregivers a journey in which you also find richness, love and a sense of achievement along the way.

[CindyM]

Thank you Landscape, for words of wisdom. Special hugs to you tonight, as you grieve theloss fo your DH. Cindy

[Thumbs Up]

Landscape, I'm also giving you a big hug. I am so sorry for your loss. May God bless you. Norma

[C.F.]

I just found this forum and am excited to make friends like you, who share this in common.:) CF

[Gina]

Landscape again i am so sorry for the loss of your husband he was so lucky to have been blessed with such a wonderfull partner and caretaker.......C.F. welcome to the forum. You will find so many caring and special people here!......Gina....p.s....wish were all like my grandaughter favorite characters{Teletubbies} and could give BIG HUGS....all around!~!!!!and then as they say"AGAIN AGAIN"

[C.F.]

Thank you Gina, for responding to me.
I felt bad after my first post, because it seemed inappropriate in retrospect.
I'm sorry Landscape. I hope you find comfort in knowing you did all you could, and that he is at peace.
That is what brings me here. I want to do all I can for my dear friend. He has lost use of hands, arms, legs, and losing his voice now. It's so horrible. I want to help him have the best life possible.
I am grateful to know there are folks like you out there to talk to and get info from.
Peace, CF

[CindyM]

Hey, CF. Don't sweat the small stuff. It takes awhile to learn your way around this forum. We have so many caring members and there is so much information! Landscape, in fact, has been on of our most steady and supportive members. I am sure she understands.

[landscape]

Please don't feel badly, CF., your post was perfectly appropriate. As you say, we share the disease and the caregiving in common and we especially understand the distress of those who are just joining the forum. Thank you for your words of comfort. I'm certain you will be a great support in helping your friend live the best life possible.

[Gina]

CF.dont worry i did the same thing when i first joined didnt know my way around the forum so i just jumped in!!!We are all in the same boat so dosnt really matter that much as long as we find each other that is the main thing!I applaud you for stepping up to the plate and yes!!!!This is such a cruel heartless disease you will find that thier are more and more people on here that have close friends that are going through the same thing as you!My friend swmn has posted many threads that may be of interest to you!She also has a dear friend whom she cares so much about who is going through the same thing!You may want to look for her posts and contact her she will help you so much i am sure.Anyway we welcome you and please do not feel guilty you are to be admired for caring so much and i look forward to hearing from you again......Gina

[cherie]

It started one day in oct/07 my spouse was having trouble with his jaw and chewing and swallowing was a chore for him,we didnt think too much of it at the time until we noticed it wasnt getting better and he was loosing weight fast so we went to Dr they thought ooh so many things we underwent so many tests,until the dreaded day we get the call to come in to see the neurologist and he wants to run an EMG,well I knew of the test becuase I was constanly reading up on my spouses symtoms.I knew what was going my spouse didnt at the time and he is still not accepting it,he tells ppl he thinks its just a virus and he hopes to get better soon:cry: so as his caregiver and watching him change everyday is hard on me I listen to him talk the future with our grandchildren,and our dreams and I just listen with not alot to say.I dont know what to expect I mean I know whats going to happen to him he has already lost movment in the right foot and its moving to his left now,But I guess what I am wondering is how long does it take before he is unable to walk:confused:

[CindyM]

Hi Cherie- welcome to the forum although I am sorry to hear about your Dad. This site has a great bunch of folks - many who are in your shoes, so I am glad you found us. It is hard to say just how quickly your Dad's condition will progress. There seems to be no hard and fast rule for these things. You might get some idea if you do a search from the tab at the top of this screen. ALmost every topic has been discussed here so feel free to jump right in! Cindy

[cherie]

Hi Cindy thank you for your response although it is not my dad it is my spouse,we just found out dec19th and to say the least it put a damper on our holidays,we tryed to make the best of it for our kids and grandkids,my spouse is only 40 years old too darn young for this I mean wow I dont know what to think..

[cherie]

Hi everyone I am very new to this whole thing everything including this site and for now what I am looking for is a place to blog and maybe meet other ppl that are new to this as well and even ppl who are farther down the road than me and my spouse,I am very aggervated I cant sleep at night my spouse when he twitches sometimes its really hard twitches and it makes me sick to my stomach knowing whats happening to him:cry:..We are living in a two story house and we are going to have to downsize very soon I think becuase he is already having a hard time getting up the stairs''sighs'' I cant seem to rest it feels like my mind wont stop going like a whirlwind of questions.. So anyways is this the right place to blog or?
ps.I really look forward to hearing from you...

[Markbreton]

I found this forum only a few days ago myself. My wife has Bulbar ALS and I noticed you replied to my Thread, Thanks! I've been reading a lot of the comments and it's reassuring to know that we can vent here, make comments and ask for support. Wonderful place to learn also. My wife was 49 when she was diagnosed, almost 2 years ago and I like you feel sick and terrible as I see her decline. OH if I could just snap my fingers and make her better. People keep telling me that I'll be strong....HUMMMM, when will that happen? Cus I'm sure not now.
Marky

[cherie]

Hi mark yes thats alot of I feel right now is just sick and messed up feelings!! GRR my spouse is only 40 and we just found out Dec 19th of this year so it really put a damper on christmas we tryed to make the best of it for the kids sake but I honestly wanted christmas to pass us by...Things in our world just arent the same,and i know never will be!! I feel the same I wished I could make it all go away and he would be better but it isnt so..

[Markbreton]

My wife went way overboard this Christmas with gifts for our children...6 of them ranging from 26 to 17. I suspect she did this thinking it will be her last one. LOL She did the same thing last year. With god's help and hopefully new medicines she will be here for a few more enjoyable Christmas's.
mark

[Markbreton]

I hope people do not think I am cold or uncaring but I spend many hours worring how I will care for my wife. She is 51 and I'm 54. We still have children in University and there is no way I can quit my job to provide constant care for my wife....we are definitely not at that stage yet but it's making me sick wondering how we will take care of her. I love he so much and I want to do everything I can for her but leaving work is not an option. I'm totally lost on what to do.
Mark

[cherie]

Hi Mark:
I hear you about the worries about money,I have the same worry I mean I will be honored to take care of my spouse,its just I dont know how I will survive money wise either he is still working right now but that has slowed down alot,its only natural I think about these kinds of things.I have a thousand questions right off the bat,but I know I can only deal with one day at a time,and worry about the present moment and face each challlenge as they present themselves..It sounds like your wife really enjoys the children and wanted to give them a nice christmas..Its got to be hard not knowing whats next for her...

[Al]

Hi Mark. Has your wife applied for Canada Disability Pension? CCAC can help with care as well as the Red Cross. Have you registered with the ALS Society of Ont.? They can help explain your options as well.
AL.

[JACKIEMAX]

hello to new members as well as us oldies,

my husband has had als, the limb onset kind, for two years now, and has declined rapidly the past couple of months. he is on his bi-pap almost constantly now, and is in a hosp. bed in the den most of the time also. he can still eat by himself, but is noticing a difficulty in swallowing, so we are glad the feeding tube has already been inserted for when it was needed.

my heart actually breaks in two as he hobbles on a walker with me behind him steadying him to the bathroom and back. he is going to start using an external cathetar tonight and i hope it works for him.

i have to go to the bathroom with him every trip as he cannot 'clean himself' anymore. i have asked his and my family to shorten their visits, and his family have given me hell for it. i am only trying to make his last weeks or maybe days more peaceful.

friends, please pray for us - for peace and comfort.

thank you all. jackiemax

[CindyM]

We do pray for peace and comfort for you both, Jackie. Cordially, Cindy

[C.F.]

It is bittersweet to read all the replies of encouragement and support. Hugs to all of you. This is the worst thing to have to endure, watching, waiting, helping, and feeling helpless. Wondering how long it will go on is so hard, and wanting to help our loved ones not suffer......
Love and Peace, CF

[Gina]

Hi Cherie,welcome to this wonderfull loving forum,sorry however that you have to be here!This situation and so recent diagonosis must still have you in shock.My husband was diagnosed 4 +yrs ago so i guess we have had time to ajust to the reality of the situation.It definately is not an easy road to travel and in fact at times is can be somewhat overwhelming.!!You will need time to ajust to the dx and let yourself grieve the loss of your future dreams together.Your husband is so young!MY husband and i had to sell our house also because of the stairs and i wanted to be prepared for the future as well.I wish that they were some way that i could help you !I hope it helps to know that thier are so many wonderfull people on here that will be here for you every step of the way!!!...............prayers and hugs your way ....Gina

[cherie]

Hi Gina; yeah thats what were facing is moving out of this house because of the stairs,my husband is so young and we had all these plans and now this it was a blow I mean we never expected this at all,well no one does expect this,I get so fearfull I dont know what to do,I know its going to be a rough road and I pray to god everyday for the strength to keep going,Our daughters moved out today we figured it would be easier on us and them if they didnt have to go through this on a daily basis..We still have our youngest daughter here she is 18 yrs old with a two yr old daughter she asked me if I wanted her to stay,I dont know what to say to her I want her here but the baby it will be hard for her I think because she loves her grandpa so much and she is used to him picking her up and swinging her in his arms,and he can still pick her up but not as much as she would like.I think for awhile she was mad at him because he wasnt paying as much attention to her,well only becuase we going through all these tests and the stress and stuff like that.There seems to be so much to think about all the time,for now we are taking it day by day because he can still walk,its just really slow.I am glad to have met you here as well Gina its unfortunate we had to meet under such hard times..I am so greatful to have site to vent and cry and share stories.God Bless Gina thank you for sharing with me.. cherie

[CindyM]

Hi Cherrie- speaking as a grandma all I can say is that little ones bring a lot of joy into the house and they are so adaptable. Grampa may possible find new ways to play with your granddaughter and her little life will be enriched as well. I wonder if either of our Al's would agree? I think MT lives with grandchildren (?) and I think some of Al's grandkids are nearby, if not in the same house.

Please do a little research before you have your daughter and grand daughter move out. For that matter, the day may come when, as primary caregiver, you might need the help of your other adult children. JMO. Each family has to find their own way in this...Cindy

[cherie]

Hi Cindy,yeah I was wondering that to if our grand daughter would actully be a brightness in our world,she really loves her grandpa,when our little grandson was born nov 30th she looked at the baby and said ''my grandpa'' lol so they are close.I really appreciate the feed back..My daughter the one that still lives with us is stuying to be a nurse she is in her first yr,so yeah could be helpful to us..

[CindyM]

My thought, too. You daughter will get experience that most nurses and docs do not have, and it couldn't hurt a PAL to live with a nurse in the household! :-D

[APC]

Hi, I have been reading many of your posts and encouragement to others. Tonight as I read I'm sooo scared. My husband was dx w/ PLS formally in Sept. I see him declining with his muscle strength and shrinking muscles. We love each other dearly and I plan on taking care of him and being there for all of his needs as possible. What scares me the most is watching him decline.Seeing the frustration in his eyes and the look of despair when he can't button his pants or pull up his zipper. I do have a great friend whom I can talk with,but all people have problems. I do have a strong faith in God, and Jesus is my Lord and Savior. But, sometimes I feel like I'm gettin hit from all directions. I have work friends that say I'm so strong,but while I'm standing there I want to get my husband and run away. I know running away is not an answer. Just venting. Thanks for listening. APC

[cherie]

Hi I am sorry to hear about your husband,I know its the hardest thing to sit back and not be able to do anything for the first two months of testing I wasnt able to sleep or wasnt eating right it was horrid..I have fianlly got to a point where I can get some rest..I will be here if you ever want to vent..God Bless
cherie

[CindyM]

I do not see how we cannot be scared at times. The possibility of becoming totally dependant upon another scares the dickens out of me, as did the possibility of having to take care of someone who is totally dependant 24-7. It is good that your co-workers see you as being strong - that's valuable feedback on the abilities that you do have. But you also need to vent. That's why we are here! Cindy

[Gina]

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

[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 !

[cherie]

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...

[Markbreton]

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

[Gina]

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 dx...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

[Markbreton]

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

[l2c]

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.

[cherie]

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 dx 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...

[MtPockets]

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

[C.F.]

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)

[Icanmanz]

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

[C.F.]

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

[Barbie]

I got on anti-anxiety drugs shortly after the dx 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.

[CindyM]

Good advice, Barbie. Nothing wrong with askinf for help when we need it! Cindy

[APC]

Thanks so much for the encouragement. I know that I had posted on one of these. I just now found it. We got the dx 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.

[APC]

Thanks for your encouragement too. Sorry I didn't include you with the last note:-D. APC

[JACKIEMAX]

i am responding to the post about the husband who's caretaker wanted to know how long it would be bef. he could not walk. my husband's symptoms began exactly two yrs. ago with one foot being limp, then legs weak, then back, etc. he can still take a few tiny baby steps with a walker and me holding from behind.

no two patients have the same symptoms at the same time as others.

jackiemax

[candacek]

this is our 7th year. my husband is mostly paralyzed and advancing into bulbar- choking, slurring (and i am mostly deaf- so we bought a voice amplifier). we also installed a ceiling hoist so i can transfer him into and out of bed, wheelchair, bathroom. i have been on antidepressants for several years but i still feel numb and all the signals of severe depression. it is still mind boggling. i went to an als seminar and one of the classes was about what we have lost. i started with the major: selling house, early retirement, expenses, and then thought about candlelight dinners (dinner is not the same- he can't eat and talk), walks in the neighborhood, playing with grandchildren, tickling fights, laughter without choking. it was good to get it down on paper. i take effexor antidepressant but it doesn't seem to cut it any more. fortunately a friend has moved out since my last child married last month and we have a spare room. without her the house is deathly silent most of the day and little laughter.

[CindyM]

i am so glad you have somebody to share this with. It's a long day for a caretaker going it alone. Write often and let us know how things are going.