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pepsiman

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Joined
Feb 4, 2009
Messages
442
Reason
Lost a loved one
Country
US
State
NY
City
Latham
I've been an infrequent visitor here since my wife was diagnosed with ALS about 2 1/2 years ago. I find myself withdrawing from life to a great degree, what with all the demands that are put on me. I know I'm not being a great husband, or father, or even employee for that matter. When I'm at work I'm constantly worried about whether she's okay, when I'm home I'm always jumping in to help when I'm not wanted. Seems like I can't win in any situation and it's really getting me down. I'm not a religious person but I've come to believe that if there were one thing that could be put before me to challenge me and force me to learn a lesson, this would be that opportunity. I frequently question whether I'm up to the challenge though. I'm just posting this here today because I find I can't cry anymore and I need to let it out somehow.
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
I feel your pain and will let you know you are not alone. I am afraid to leave the house for fear that the wife will fall while transferring from her chair to the toilet or something will happen when I am not there. I have even withdrawn from the family to an extent. I have my computer all set up in my man cave in the basement and that is where I spend the majority of my time. I am a musician and have been putting off jamming with friends for months. Music is my first love but had to put it aside cause it wasn't paying the bills and now it is my hobby or my stress relief. Sometimes my frustration gets the best of me and I find myself lashing out a bit. I don't mean it toward the wife, just the disease itself. We were doing so well just before she got sick. I am not a religious person, never have been. I spent a good amount of time trying to understand why this would happen to such a good and decent person and our family. I felt if there was a god he would not allow this to happen to us. It only reinforced my beliefs that much more. I apologize to those that truly believe but it is my opinion and mine alone. As far as up for the challenge you and I are in the same boat and we must be up for it. In my case my dear wife and my 2 kids depend on me to be up for it. It is a dark and lonely road we travel and we have good days and bad days but we are all walking down it together. I used to dream of the future, what it was going to be like when the kids left the nest and the wife and I could start a whole new life together, grow old together. Now I concentrate on today. I do not dream of life beyond one day at a time. If there is a silver lining to all of this it has been that I no longer take anything or anyone for granted. When I speak to those I care about I am sure every conversation ends with me telling them just how much I care and appreciate them. It has brought us all closer together. I appreciate the little things now that I have let go of the obsession I had with material gain and now concentrate on emotional gain. I am learning to be a better person to those I love and to others. My wife has been my conscience and my voice of reason. She has seen me at my absolute worse and has stuck by me when most others would have abandoned me. For this I owe her everything and will stick by her no matter what this terrible disease throws at us. Just remember that you are not alone and thankfully there are places like this with compassionate and empathetic people that will lend an ear when you are down and need to vent. Not just the people personally afflicted with the disease, but people like you and I. Even though we do not know each other we share a common bond. Anytime you feel the need to vent feel free to PM me and I will be there to listen.
 

beverly rees

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Joined
Nov 2, 2008
Messages
85
Reason
Lost a loved one
Country
US
State
ca
City
portola valley
My husband was recently diagnosed in October with ALS. What has been helpful for us is to talk about our feelings. I think it is very important to do something you like at least once a week. I enjoy playing golf once a week with a ladies group. This always makes me happy which helps me feel more loving towards my spouse.

We also discussed that as his daily living activities needs increase we will seek outside help. Hopefully, this will help prevent caretaker burnout and enable us to still enjoy our relationship.

We have also started attending an ALS support group in our area once a month which is helpful. I am also a very social person and have been blessed with very good friends who are very supportive. The ALS clinics have social workers that are also very helpful to be able to talk to.

I think the worse thing you can do with this disease is isolate. There are people that want to help and when we let them it is a win win situation for everyone. It makes life better for the both of you.

We also are hopeful that the stem cell research will provide a cure for this disease in his lifetime. We pray for this everyday and for all the other diseases that need cures.

I hope you will be able to connect with the right people to make your life so much better. Bev
 

Ellamay

Active member
Joined
Mar 5, 2009
Messages
45
Country
CA
State
BC
City
Cassidy
SteveS,
I too live on the island and my husband was diagnosis with Bulbar Onset Nov 2008. I so relate to what you say. This was to be our best year. Kids almost out of the house, we were going to travel and had a trip planned to Mexico in Jan first of many was our plan. Now that has all fallen to the wayside and now it is one day at a time.

I often think that no one can care for him as well as I can. All of his major falls have been when I wasn't home. It has been hard to allow Homesupport or other family members take care of him.
Have you gone to any ALS meetings yet? Is there any up island? I live just outside Nanaimo and haven't been able to meet anyone locally that are going thru what we have been going thru.
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
Hi Ellamay,
We haven't been to the meetings yet. There is no support group up here that we are aware. The only person that we were aware of with ALS in our area passed away in January. The wife had spoken to them once over the phone (spoke to wife as husband was unable to speak). They have meetings in Nanaimo at the Brechin Church I think on a certain Wed of every month. I will get that info. What ALS clinic do you go to? We go to GF Strong in Vancouver. Great bunch of people there. We are also taking part in the Walk for ALS that will be taking place in Parksville this year. I believe that is in June. Wife is no longer walking but still has decent upper body and no bulbar symptoms yet. We are hoping since she is only 38 that progression will be slower and that age is on her side. I will get the meeting info and post it. Hopefully we will meet there sometime.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
WOW, God Bless you for the love and caring you give to your spouses.

Each of you are caregivers and I am a PALS but I could not stop myself from posting.

You all have a wonderful attitude towards looking after your spouses and I have been touched by reading of your love and devotion! God Bless each of you! I too have been blessed by a loving supportive wife and family.

Take that trip you have always wanted while you can, we went on a couple of cruises before I got too bad and we are very thankful we did. Now we look at the pictures and reminisce. Even thought I am dependent on a powerchair and have a trache and vent we are planning another cruise, life does not have to stop because of ALS.

Also, please ask for some help and take care of your needs as well.

I am available to talk anytime you want, please let me know and I will call you.
 

Ellamay

Active member
Joined
Mar 5, 2009
Messages
45
Country
CA
State
BC
City
Cassidy
SteveS
I have the info on the ALS Support Group in Nanaimo March 25th Brechin United Church Estavan Rd 2-4pm. We too go to G F Strong. We have had only one visit there in December and we were scheduled for March 25th but my hubby doesn't want to travel so we are going to the clinic in Qualicum in April. I guess GF Strong comes to us on the island once a year. My husband has Bulbar onset so he can't speak very well any more and he is still walking with a walker but tires out and uses his "computer" chair to roll around in the evening. He's not ready to use his wheelchair yet. He has limited use of his hands as they have atrophied. My hubby is 42. Unfortunately he is progressing rapidly which I quess is normal for bulbar onset... it is a difficult time for us as it is happening so fast. We barely have time to catch our breath and adjust to the progression than we lose something else...
 

sweetmozart

Active member
Joined
Feb 22, 2008
Messages
64
Reason
CALS
Diagnosis
05/2001
Country
US
State
MA
City
Greater Boston Area
So many of the things that were said in this thread strike a chord.

Sometimes I feel like venting ,too. It's normal. I know my husband (PALS) does as well.

SteveS, you really expressed a lot of the same things I have felt - and still do. My husband was diagnosed just as our life was really getting where we wanted it to be. We both had lots of dreams. It's funny, you never realize how much you count on your future hopes and dreams until they go up in smoke. I used to mourn those things that will probably never happen.

Now I realize that there are some things in this life that we have always loved. One of them is traveling. We are not about to give that up. It will take a lot more planning, but I am not going to let this take everything from us.

I also want to say that, one thing you should always remember ( sometimes it can be difficult ) is all of the blessings that you still have.

Take care, everyone.
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
City
saratoga springs
PepsiMan....I live in Saratoga...totally understand where you are coming from. There are days when I just wonder how I am going to do it all. Everyone always comments on how strong that I am...but there are days that I just do not want to be strong. But, tomorrow is a new days. Just coming off of a really rough weekend of caregiving. I once read on this forum..be mad at the disease not the person with the disease. I really have to repeat this in my head.....many times a day. I am sure that you are doing a great job. I keep saying to people , "There is no rule book with this disease!" Hang in there my friend. Kelly
 

rocmg

Distinguished member
Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
State
N/A
City
N/A
hi... i just wanted to chime in. i shouted at my mum yesterday and i've felt awful about it ever since. she is recently diagnosed so we are only just at the beginning of all of this. i told her that she had never been happy and implied now that she never would be. it was cruel and i regret it. she didn't deserve this disease. she's a great person, a much better person than me or anyone else i know. she just gets so down sometimes and it scares me to see her like that. she was always the strong one in our family -- the one that everyone came to and dumped their problems on and yes, she always sorted it out... or made a cup of tea and told me some of the stupid mistakes i have made were justifiable (even though we probably both knew i was wrong.) it's hard to be the comforter now rather than the comforted, and it's difficult to separate frustration and anger with the disease from anger and frustration with the person. love wins through though and no matter what happens i'll be there for her, helping her fight this thing.


now i just have to figure out a way to make sure she takes all those pesky vitamins everyday... :razz:
 

KCAL

New member
Joined
Oct 29, 2007
Messages
1
Country
AUS
State
Queensland
City
Roma
Hi

Ummm, G'Day....My husband (33yo) is actually at this moment having stem cell treatment for MND/ALS, this is his 2nd lot, the first eleviated muscle twitching and progression slowed enormously (I know ppl will say that is the nature of MND/ALS but we believe that it was the treatment). Treatment drags him thousands of klms away from us but I would hate to say later on that we didn't try.....My hubby was diagnosed in Oct 2007 and given 2 yrs, we bit the bullet and sort out a rep DR who has been awesome. Hubby is still working on the farm, admittably a little slower, but not in the wheelchair the neuros said he would be by now..... He's fighting as too am I, mind you the tears and fears are there every day for both of us, but primarily we are being positive for our 5 children........ We pray that one day the only degenerative disease will be old age, please join us in that.......:-D
 

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
I am so there with you. My mother is bedridden now except for being hoisted in and out of the bed for the bedside potty.

She has a bicycle horn attached to the side of her hospital bed and squeaks it to summon us. Those old movies where some elderly person rang a bell incessantly have nothing on my mother. She continually honks....to put her on the potty, to get a fuzz ball off her sheet, move a picture just a bit. It is comical most of the time but, there are times I would like to kill that horn.

All we can do is just take a deep breath and tell ourselves that there will come a day when we would give anything to hear that horn again.

Hang in there!
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Ha, I have an alarm for my mother, which she presses and it sounds on the moitor, it keeps saying "NUmber 1" Im the 4th daughter and so I do say, its not calling me Im number 4. It's a joke for the eldest sibling, but sure im there full time so I guess Im number 1 now!

I know how hard it is being the only person living with my mother full time, and we dont have a whole lot of care, 2 hours a week, but i have rosters for my sisters, so they share the weekends, and my mums 2 sisters come down twice a week also. We have a meeting with the medical team next week to organise more care and assistance, fingers crossed we can get someone in for a few hours a day to help.

I understand about turning unsociable, I was a very social person with lots of great friends, but I find I dont go out as much as I used too and although I used to get upset about not being able to get out, now I dont want to as much. And I never think anyone looks after her properly, or the way I do when im not there. I guess this is what its like when you have kids!
But what I usually do now, is invite the girls round. My mam loves my friends and they love her back. We order a takeaway chinese meal, have a few drinks and play the music, it boosts my mam for the few hours, then when she goes to bed I can sit up chatting with the girls. We have a night planned next wednesday, looking forward to it. Something maybe you can do also? You are still at home, but thinking of other things, socialising with friends, and listening to their problems, great fun:-D
 

Mindy

New member
Joined
Mar 23, 2009
Messages
1
Reason
Loved one DX
Diagnosis
10/2008
Country
US
State
MD
City
Mechanicsville
Venting is a health approach and if that helps you need to do more of it. My husband has this "freaky case" of als that has progressed so quickly over the last year. I feel like someone took our lives and just flipped them upside down. It is so hard to figure out what is important anymore and what is best for the family. We have 3 small children and I get advice to "keep everything as normal as possible" and what does that even mean anymore? One day at a time is about all we can do and surrounding yourself with as much help and support as you can get. I am so exhausted at the end of everyday trying to take care of my family while caring for my husband who is now full care. My kids are 8, 5 and 6 months old. I try to remember that we are a family, we married for better or worse and what would he do for me if I were in his situation. I am a nurse and sometimes I resent my profession because I think he expected me to be Florence Nightengale all the time and forget that I am also his wife. There is always that fine line between caretaker and spouse. I try to vent away from my husband and when we are together I try to listen to him and talk about everything we need to without complaining and venting all of it to him.
 
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