Old 12-05-2007, 01:34 PM #1 (permalink)
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Hi, I am a new member of a club I never expected to be a part of. My 81 year old mother was diagnosed 2 days ago, after enduring months of steady decline in health and no real answers. My 82 year old father is a complete wreck and right now is in worse shape than mom. I am at a loss, and feel totally inadequate and so so so sad. I do my best to keep it together for them; take them to the appts, be there with a shoulder, but I am also trying to keep them from getting mired in an emotional pit. Mom has been very strong, and upon receiving the news, proceeded to thank God for His blessings. She plans to share her story of how God has been working in her life for as long as she has a voice. I have 4 teenage boys who love their grandparents a lot, and have witnessed married love at it's best; they have been married for more than 50 years. I do best when I am dealing in facts, and have a plan of action. What should we be looking for in home care, assisted living, etc. Mom and Dad live on an acreage about 5 min from me, and are reluctant to leave it. Any suggestions? We are in the Edmonton area. Does anyone know anything about Dr Wendy Johnson? She will be Mom's doctor.
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Old 12-05-2007, 03:36 PM #2 (permalink)
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Dukey,

Sorry your family will have to live with this monster, but, try to find the good in it. It seems your mom already has. Your dad, well, after being with someone for 50 years, it must be really hard.

I guess, the best way to look at all of this, is they had over 50 years of wonderful times and over 80 years of good luck. Times will be tough, but she sounds as if shes a trooper. Your dad will need your help. You will need to be strong.

I don't know about Canada, AL can help you with that. I know in the US, there is the ALS assn.

On planning, they (The Doctors) don't even know what causes this (ALS), so planning will be difficult. i would say, help with the norm, educate yourself on the progression and find out what your mother wishes. Does she want vent? How many life extending assisting devices will she want? Is here will in place....

I guess they are all hard questions to answer, but it seems you are ready to tackle niagra. Hat's off to you.

On the living arrangements, i would say, ask them what they want? Perhaps, you let them stay as long as they can, in the meantime, prepare for them on your property or vice versa. maybe they would prefer assisted living?

Sorry im' not much help, i don't know alot of the answers to all of this either.

Our prayers are with you and your family, please ask any questions you want. We are here for you.

God Bless!

Rgds,

Jamie
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Old 12-05-2007, 06:44 PM #3 (permalink)
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Hi Dukey and welcome to the forum although I am sorry to hear about your Mom. It must be tough on everybody, especially Dad. I hope we can help. There are a lot og great folks here and much great information. Jump in with questions anytime. Cindy
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Old 12-06-2007, 06:02 PM #4 (permalink)
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Thanks for the welcome. Today was a good day. The home care nurse came to the house and things are in motion. Does anyone know if high blood pressure has an affect on the progression of als?

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Old 12-06-2007, 08:22 PM #5 (permalink)
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Hi Dukey
Sorry about the ALS Dx on your mom - my uncle ( 82 yr.s) was Dx'd 9 months ago and died 8 months later. ALS is different for everyone, but it seems there is a trend that the elderly people deteriorate quicker - But I wanted to tell you, that your dad may be very much in danger here as well- when life partners as your folks are faced with a terminal illness as this one, the care giving spouce can go through sucha large amount of stress- to the point of his health deteriorating quicker than hers- sometimes care givers are so focused on their partner's needs that they neglect themselves,; some die before the terminal partner - so remember to keep tabs on your dad, too. I know you have a full plate - but your dad is going to need support for his own needs too. My Aunt's health took a major turn for the worse after she started trying to do everything for him at their home. For my uncle, there was hospice coming 2X a week and they could stay in his home - but the kids were always around to help. He deteriorated quickly - so they never got to the stage of considering their living situation. Best of luck to all your family.
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Old 12-06-2007, 10:55 PM #6 (permalink)
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Hi Dukey, sorry to hear your news. I live in Sylvan Lake not to far from you. Cindy Johnson is supposed to be the best. There is a member mike27 he is from Edmonton and diagnosed with als, this is his doctor and he said she is the best in western Canada and she is a wonderful person. He said she is from Portland and it was quite a big deal when the university hospital got her as a doctor. I have been referred to her and am awaiting an appointment. Mike is very helpful if you have any questions about resources in edmonton area he may be able to help you. Mya

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Old 12-06-2007, 11:42 PM #7 (permalink)
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Hi Dukey, my heart goes out to you and your parents. My folks were in a very similar situation this time last year. My dad had ALS, diagnosed at 84, though we are fairly certain he had it for several years before that. My mom, who was then 78, was under stress as any spouse would be, suffered mostly from mental strain. It is a good suggestion to keep aware of how they are both doing, emotionally and physically. The illness is especially hard on an elderly person who does not have a lot of energy reserves as it is and who may have other health issues related to age. As others have said, there are many decisions to be made about procedures and living arrangements, but sometimes it is hard to know what exactly will be needed first. It is clear your parents will need help. If that can be in their own home provided by family, friends, and home health providers, they may go along for a while with these arrangements. If your dad is capable of much of her care, they may not need to move, especially as you are so near. It may be better for them this way, and for him to be in a familiar place later on. On the other hand, if they want an assisted living situation, they will probably need help to evaluate the possibilities and find something good. The progression of the illness is so different for different people, some lose speech and eating capabilities and need PEG tube surgery before they are physically incapacitated in their limbs. Others lose function of legs, arms and hands while still completely capable of eating and speaking and need a specialized wheelchair to get around and possibly lift equipment to navigate bathing etc. Each situation requires different adjustments. I don't know about the high blood pressure, as my dad did not suffer from that, though he did have a heart murmer that also weakened him. My folks were married 51 years, and it has been very hard on my mom since he has now passed on. I think it will be better for your dad if he remains near you. Though your mom has lived many good years, and may yet have several more (nobody can know for sure when their time comes) it is still extremely hard to think of losing her to this illness, I am sure. The love we have for our family members only deepens with the years. Sincerely, Holly
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Old 12-07-2007, 10:26 AM #8 (permalink)
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Hi Dukey

Your Mom sounds like a pretty tough woman!
Dr Johnston is one of the best! She has been my neuro for a few years.

I would advise to contact Patricia Ordynec at the ALS Society's Edmonton office. Their number is 487-0754. They can help guide you folks through all the maze of agencies and so forth.

If you need to talk to me (I'm in Edmonton) just send a pm.

Cheers!
Mike
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