My step dad isn't a very pleasant man...over the past couple of years we have watched him deteriate slowly...My mother would take him him and they told her his diabetes was getting to him...he would gain 40+ lbs of water in his chest cavity..they would have to drain it often...last year he went into a nursing home because he had been diagnosed with a rare infection and only a nursing home could administer and get the medicine required..(this because it was rare)...6 weeks later and after being spiteful and hateful to those people, he was back...his body started slowing down and he started using a cane to walk with...tons of pills and diet were what he has been taking on...meanwhile his attitude became worse...My parents finally sold their home in Condon which is up in the middle of nowhere...literally nowhere..no hospitals, major stores, no doctors, ambulance by life flight only....anyway they moved to a bigger town and closer to my Aunt...My step father was sent to a specialist at OHSU..last Friday he had a visit only to find out it is this awful diease he had and was given 6mo. to 1 year left because of the advancement...He has become verbally agressive towards my Mom...She had to finally leave him for a few hours just to get away....This disease is where the brain attacks the nervous system and the nerve start attacking the muscles...soon everything won't work anymore, limbs cannot move, you cannot speak or do anything for help or get what you want..although the brain is still widely aware of things, nothing else is..The nurse told my Mom he would either drown in his own self or something like that...soon if he still hangs on, they will have to place a feeding tube in his stomach....I WOULD THINK IF I WAS DYING AND IT WAS TO BE LIKE THAT, I WOULD BE NICE TO MY SPOUSE OF 32 Years..knowing they were going to have to help me the rest of my days..

my prayers are for you and family. It must be hard for your mother . I don't know an answer on your questions, I only hope your mom can get some help so she can leave the house sometimes and can do something she likes to do for herself. I gave you some links;I don't know if this is the same disease But I thought it is. In that case you can read some background information about this awful disease. my prayers are for you and family. Hugs. Gerry

Deanna my heart goes out to your mom & you. ALS or Lou Gehrigs Disease is a terrible disease. I believe you can google it up & read all about what to expect. There may be a support group of caregivers on line that can give support I do not know what they have in that part of the country. I do know the life expectancy is not long. Prayers already going up for your mom & you. She will need a lot of outside help if she tries to keep him at home for they become totally unable to do anything for themselves. Anangel has put it so nicely in her answer to you, her advice is very wise & so true. Prayers are for you all/Lillian

My prayers will be for better days for all concerned. This has to be a terrible disease that renders the victim
a multitude of deep emotions that he neither likes nor intends to happen. One has to be able to empathize with the person's frustrations and feelings of loss to find sympathy. Love cannot be found where there is none, in regards to yourself, but you need to remember that your
mom has 32 years with this man that undoubtedly includes many memorable moments of loving and caring for each other.
She understands he is not the same person he used to be, now that he has this awful disease, so it does not lessen the love she has for him. Because you love HER, your role
should be to never speak badly of him to her, that would drain her further emotionally, but gently encourage her to
do what is necessary to maintain her health during this difficult period. Realize that she may not be as miserable
in her caretaker role, as you imagine, because she truly loves and cares about him, therefore making allowances for his rudeness and outbursts. She possibly wants to be there for him, as long as she can, and knowing it may not be for long. Within your limitations, assist her towards this goal, and ease her into the acceptance that soon she will have to allow others to give the care he truly needs that she will be unable to give. Support her efforts in a
positive tone, for HER sake, physically, when you can, and always be the "soft" place to land whenever she needs it.
May God bless you all.
Angel

2 comments

by camylow 25 May 2011

as much as I would love to say they were 32 good years with him, unfortuanetly I can only say there may be a total of one good year....like I said...He wasn't a very pleasant man to her either...

by anangel 25 May 2011

Deanna,
I know there are some mean people in this world, and some very abusive relationships, but I cannot fathom anyone staying in one for 32 years, unless the good times outweighed the bad. Whatever her reasons, she seems to be staying in it to the end, so my advice to you, as her daughter, still stands.
Angel

I'm so sorry for all of you. I will lift you up in prayer and ask that you all will find a way to deal with such a terrible illness. Hugs, Judy

Deanna dear, I feel for you and for your mother - this has to be very hard on each of you - of coarse on your step-father as he is the one with the disease. I will be praying and the only thing I suggest for you - get informed - as much as you can - ask a doctor or a nurse - what you can expect and also what you can do to help your mother.

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My sympathy to you and your mother. This is a very difficult situation for all. Definitely give your mother all the support you can without making your own life miserable. Is there any place she can use as a respite for him so she has some peace? Perhaps the doctor can be a resource to help her gain some time away from him. I really think she needs to talk with the doctor(s) involved including her own. She also needs to protect herself physically as well as emotionally. Please keep us informed.

I had a very dear friend that passed away with it over 20 yrs ago and it is horrible for the families to have to go through dealing with it. I can not imagine how awful it would be for the person that has it. Elsie had 2 young teenage daughters and her husband was my best friends cousin. That is how I met the family. Elsie was an angel through it until very close to the end. I am so sorry to hear of anyone that has to go through such anguish. She did not get to see her girls graduate , marry or get to hold her grands. I do know that she is watching from above now and keeping up with Tammy amd Teri and their families. If anyone ever earned their ticket to heaven, she is sitting up there smiling!

Praying is a very good healer for all concerned. Life is too short to be bitter. It hurts all concerned. You just never know what can come from praying. The sad thing is, even after they can no longer function, their mind stays with them. The family asked for no company toward the end so Elsie would not know others were seeing her that way. My prayers go out to you and the family as well as the patient. Lou Gehrig was a major league baseball player from many yrs back. He had it and thus the name was given as Lou Gehrig's disease. Just do what you can for them and pray that his attitude does not get worse. Soon, he will not be able to lash out at anyone and he knows it. It is a horrible disease because they say that the patient knows everything but can not communicate. Prayer and many blessings, Linda

1 comment

by lflanders 23 May 2011

Deanna, I do not think that she will be able to handle him as it progresses. You need to get with Mom and have a heart to heart talk and try to decide what needs to be done as it progresses. I do not think she willl be able to handle him alone. What is best for your Mom could possibly be what is best for him also! Hugs, Linda

You must be referring to ALS - Lou Gehrig disease. My aunt had it - only lived 36 months. My aunt did not get bitter but I am sure that that might be your stepfather's problem. Some people then take out the bitterness on the caregiver. I am sorry for your stepfather and more so for your mother. It is such a sad disease and very humiliating for the patient with ALS. You will be in our thoughts and prayers.