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Snowbird

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:( No sympathies please. I have countless wonderful memories of our lives together. Married over 32 yrs. My husband's first symptoms appeared 3 yrs ago with loss of range in one arm. Then it progressed to the other arm, and finally his legs. His head and neck were never affected. I was his main cargiver for 2 1/2 yrs. It was tough, however I am strong, innovative, medical background, and never gave up. The best lift that I was able to find was the Multi Lift out of NY. I was able to adapt it to our 1-T truck, our 5th wheel, and our home. Now I am very conscious of homes that have no wheelchair accessability. Jack had numerous tests at HSC in Winnipeg, as well as Toronto General, and was diagnosed as having an unidentified Motor Neuron Disease.

It was only last April that the ALS Clinic at Deer Lodge Hospital gave him a final diagnosis of ALS. Jack spent his last 6 months in our local rural hospital and received excellent care. His breathing capacity decreased by 10% each month until finally he did not have any air left. Our whole family was with him, and he was heavily sedated at the time that he passed. There was no struggle, just peace and relief for everyone.

His spirit will always be with us, and we are often surprised at how he is still involved in our decision making, and also that his sense of humour surfaces daily. He had/has that much impact on our lives!

If there is anything that I can do to help anyone with coping with this horrid disease, either physically or emotionally, please feel free to contact me. I came up with a few simple innovations that helped us out. :idea: :idea:

Pat .......... [email protected][/color]
 

Mike27

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Joined
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Messages
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Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Wow! 32 years, that's fantastic! What a wagon-load of memories...

I, for one, am glad your sticking around the forum. You've got a lot to offer us, both the diagnoseded and the caregivers.

Cheers to you, Pat!
 

Snowbird

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:lol: Thank Mike! Yes, over 32 years! And the best part is that I only remember all the good things, and very frequently at that. Jack was well known for many of his expressions, and we all use them daily and chuckle. He still has so much influence on our lives. As a family, he gave all of us strength, courage, confidence, tenacity, independence, drive, values, honesty, fairness, etc. I would give anything to have him back, but that will not happen, so I just think of the memories.

As for his disease, I have accepted it since the first day he was also diagnosed with Mantle Cell Lymphoma, which alone gave a life expectancy of 6 mon to 3 yrs. Jack survived just over 3 yrs. My acceptance was due to the fact that I had been a Lab & X-Ray Technologist for over 20 yrs and practised all over southern Manitoba. Jack did not accept his fate until 2 months before he passed. Only then did a strange peace come over him. I know there were many things that he wanted to say, but he left it too late and then he could no longer speak. Mostly due to the sedation.

Believe me, we went through all the ups and downs, and the hopes and fears, all the research, unbelieveble numbers of tests, etc. I read the forum often, but do not comment too frequently. As a caregiver, I did everything in my power to make Jack's life as full as possible, including 2 trips to Yuma with our 5th wheel, right to the end. If the weather co-operated, I often hooked our Basenjis' leashes onto the arms of his wheelchair and took Jack for walks all over town or to the drive-in to share an ice cream cone. He loved it, and the dogs marched along so proudly. After an outing, Jack always slept like a baby.

What has kept me going in my life for the last 20 years, is the Serenity Prayer. And for now. some days I could sleep for 20 hrs, and other days maybe 5 or 6. It takes the body and mind a long time to heal.

[/color] God grant me the Serenity to accept the things I cannot change,
The Courage to change the things I can,
And the Wisdom to know the difference.

"One Day at a Time!"
.
 

A Daughters Love

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Oct 8, 2005
Messages
50
Hi Pat. It is positive people like you, who really make a difference for everyone reading this forum. My mother has ALS and means the world to me. I am her primary caregiver, and some days wonder how I will ever be able to be truley happy again. It is very uplifting to hear the things you are saying, and to know that there is hope with a postive attitude and your chin up! I hope you stay around, as I'm sure you will have some good insight for us caregivers.

God Bless you and your family, :)
 

Snowbird

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Messages
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Hi Michelle! Well, the blessing and the curse of this insidious disease is that the patient's mind is always sharp, right to the bitter end. As caregivers, it is our job to address the emotional and spiritual needs as well as the physical needs. In the case of spouses, there are also great needs for intimacies.

We always have choices. We can be happy, or we can be sad. We chose to be happy, or at least most of the time. The toughest day on both of us was when the doctor informed us that Jack would have to remain in the hospital. He & the nurses still cannot fathom how I was able to look after Jack myself for so long, even with total disability. It was tough, but you do it for love. Even when we did start to get some homecare, all I would do was go to the basement bedroom and sleep. Even now I can sleep for 20 hrs some days.

As caregivers we also have to endure being the victim of the anger, fears, frustrations, lack of patience, etc. Don't worry, I cried over that as much as I cried over the illness. As for the illness, Jack & I cried and grieved together for 3 years. And there were many areas that he would not talk about. e.g. business, finances, future, the illness itself, and others. That made it very hard. I had to go to the hospital with a smile on my face, and try to initiate small talk. Neither of us were good at small talk.

Once he felt that he needed me there every evening, I bought 30-40 DVDs from the Wal-Mart cheap bin, and I would watch movies with him until he fell asleep. I also read "Men are from Mars, Women are from Venus". That helped me a lot. For the last 2 weeks I had to sleep in Jack's room at night as well. It was very tiring. When the nurses would be there, I would dash home and let my dogs out.

Speaking of dogs, we had always had Basenjis together on our farm. When I found myself getting very lonely in this house, I found 2 4yr old Basenjis from a breeder in Michigan. They lliterally saved my life and sleep cuddled up against me all the time. They do not bark, and they are very human like with their emotions and their tuning into our emotions. For months they were allowed to sleep on Jack's bed between his legs, and just touching them would put a glow on his face. However, about 2 weeks before he passed, we were in the TV room and one of the nurses was using the airbag on Jack. The female dog became very worried that he was being hurt. I had her on a short leash, but when the nurse returned about 10 min later, my dog jumped up and bit her on the knee. Then the dogs were evicted from the hospital. She just thought she was protecting Jack.

Anyway, I will be happy to share my adventures with anyone, and don't be afraid to call me at home either. 204-723-2176 Even call me to cry with someone. I am good at that. I need to cry much more.
All the best to you and your mom. Hang in there, and remember, One Day at a Time! You will be fine, I promise. God will see to it. Just keep the faith, and keep your head up. Always!
 

Al

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Joined
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Messages
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Country
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Hi Pat. I remember you from some of your earlier posts. We talked abour firefighting being a cause and Jack missing flying his 182 and a few other things along the way. Glad to hear that you plan to stay around but sorry for Jack's passing.
 

Snowbird

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Messages
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Hi Al! And thanks. Although I still read the forum it was too hard for me to keep on posting. Then we went to Yuma for a month.

One thing was certain, Jack & I never gave up. We both fought to the end. And his spirit is still with all of us.

Anyway, apparently in MB there were about 125 cases of ALS/MND. About 85% were rural, likely farmers, and then automotive industry was next, and then firefighters.

It would be hard to convince me that 'inhaled' chemicals are not in some way responsible. I truly believe that. Anyway, Jack fueled his own aircraft. he was in the fire dept for 43 yrs (25 as chief), grew up in an automotive dealership, and was involved in all aspects of farm life.

3 strikes and you're out!

However, we had a very full and rich life together, and Jack always lived it his way. For that I am happy. However, I had always planned to exit first, and my friend would have looked after him.

Yes, I will stay in touch. Thanks. Now how can I post a picture of CF-RFZ for you?

Pat
 

hope

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Oct 1, 2005
Messages
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Pat, I am deeply sorry for your loss. It was very thoughtful and kind of you to offer to help others. I was diagnosed with als in september and it has devastated my wife and I. My wife has been ill for a long time so it is making her illness worse which makes the situation more stressful. We are coping the best way we can. Millions of tears. I two have been with my wife for over thirty years. We are best friends. We do everything together. She is being very strong but I catch her crying to herself so many times, it breaks my heart.

If you don't mind me asking sometimes in the family did others feel angry? We get angry sometimes and then feel guilty. The emtions change so many times in a day it is hard to know what to feel.

It is so kind of you to come to the site and try to help others. It is precious. Thank you again.

I have twitching in both arms and the fingers on one hand will not do what I want them to they are hard to move. I try to cope with the constant twitching day after day sometimes it drives me up the wall. Both arms twitch. We still do not know alot about this disease. We are waiting to see the professionals in a month or two. We feel like we are on a clothesline, just kinda hanging there wondering what do we do and what will happen next. Thank you for taking the time to read my post.

Hope.
 

Snowbird

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Messages
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Hi Hope! I will send you a longer response later. All emotions are quite normal. I was never angry, but Jack sure was. Our family had a wild mixture of emotions.

As for the twitching, 800 mg of Vit. E really helped Jack. When he would stop taking them, the symptoms would return. So much of it is trial and error. I also gave him ground flax seed.

I have an appt this morning in Portage la Prairie, but I will write more when I get back.

Hugs and smiles to both you and your wife. It is a good world.

Pat 204-723-2176 (anytime) :D
 

TBear

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Messages
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Country
CA
State
ON
City
Uxpatch
Hi Pat:
Sorry that Jack left. Maybe you should fly RFZ down here to Brampton and Al can take pictures... quick before it snows!
Hope, the only ones who got angry with my wife's ALS was her and me... her family, for the most part, was just overwhelmed in emotion and quite useless. And yes, there was quite a bit of guilt afterwards... at least on my part, but I come by it naturally... I'm catholic!

CHeers

T.
 

Theresa2004

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Apr 14, 2004
Messages
292
Snowbird, you sound very strong, but I am sorry for your loss. I truly never know what to say when I read someone has succumbed to this illness except to think about those I have met through this forum, and see such a courageous group.
Take care, and god bless.
 

Snowbird

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Oct 7, 2004
Messages
61
:lol: I would love to fly RFZ, but then there's the landing. I know they all come down eventually, but not the way we might want them to. LOL! I can fly in the air, but landing and taking off are not my thing, and I did grow up in a family of pilots (at least 8 of them, and 3 are commercial). My specialty was navigation, and I became very good at tuning in all the radio stations between MB and Phoenix. Lots of fun. And I could always spot those high mountain peaks, thank God!

Flying was Jack's passion, and my only regret in our whole married lives is that I did not always go flying with him when he invited me. Now I am kicking myself. However, RFZ will stay in the Metcalfe family, and my nephew can fly it now. Our pharmacist can also fly it. Hopefully one of our 2 kids or my other nephew will also get their training. There has just been too much going on as Jack lost his only brother 4 yrs ago to prostate cancer at age 54. Jack never did accept the loss, and I think the stress triggered his illness. Stress can do all kinds of things to a body. Now the kids are all trying to run the family businesses. Not easy tasks.

As for anger, anyone has the right to be angry. Jack was very angry and took it out on me. I didn't even know that he harboured so much anger until our doctor told me. Personally, I don't waste my time on anger. Anger solves nothing! I am more into guilt. Guilt solves nothing.

I put most of my energies into: 1) realizing we have a problem 2) considering all the options 3) taking action.
For myself, I get more satisfaction in putting my energies into positive emotions, not negative. I was raised with negativity, and it took years with a positive husband to get me over it.

Also, self-pity does nothing. Jack & I are not very sympathetic people. Jack would always say, 'if you are looking for sympathy, just look in the dictionary between sh-t and syphilis!' That might seem crude, but we are doers rather than worriers. On the other hand, I do have a lot of empathy for others.

ALS/MND is absolutely the most horrid disease known to mankind. It is mean and cruel and unfair. However, in knowing that someone has it, there are lots of things that can be done to make the most of the time that a family has left. i.e. Make a list of all the things that you would love to do. Refine the list down to what you can afford, and what you can achieve. Than, MAKE IT HAPPEN! God does give us the strength, and he shows us the way.

I won't get into religious discussions, but I was also raised with guilt and a fear of God. When I got old enough to do my own reasoning, I changed that into connecting with a loving God, and love of God. What a difference! We can all do that.

I dealt with huge amounts of guilt over Jack's illness. Why him? Why not me? Why couldn't I help him? Why couldn't I do more? Why couldn't I have been more tolerant? Why couldn't I have been stronger? Why couldn't I have been more pleasant? And the list goes on and on. The doctors made me see a counselor in the hospital for several weeks, because all I could think about was joining Jack. Life would be worthless without him.

Well, the psyche nurse made me realize that Jack's illness was not my fault. I did not cause it, and I did not give it to him. Further more, I did more than most people to try to help him. Actually to the point that now I am having some maintenance work done on myself that should have been looked after a year or two ago. She also convinced me that all of these emotions are very normal, and that every person grieves in their own way. My way is to darken the house, take the phone off the hook, and hibernate for a few days. It works for me. Others like to be surrounded by family and friends with lots of hugs and tears. I prefer to drown in my own tears by myself. Everyone has the right to grieve as they see fit. And crying at any time is wonderful therapy.

Enough babbling for now. I've been there, I've done it, and I am more than happy to share if it can help anyone. Just my thoughts. I am very much at peace with our situation, and that feels good.

Sincerely, Pat Metcalfe ........ 204-723-2176

Shalom![/color]
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Very nicely put again Pat. It is theraputic some times to just put everything down and look at it. When something is bothering Lee she usually writes a letter to the person she is upset with. Usually she doesn't send it but at least she has expressed her feelings. I think writing them down has helped her over some of the rough spots with family and friends. Once she has vented she feels better.
Thanks for the picture of RFZ. Kind of small but it looks to be in nice shape. What year is it?
 
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