Advise from Caregivers

[mj95]

My dad who has Bulbar ASL should been released from the hospital this week. He was just diagnosed this week. My mom is a mess. She feels the weight of the world on her shoulders. I told her once she gets home & talks to others in the ALS community she won't feel so alone because they understand. I am I right? My mother is watching her partner in life die and I don't know what to do for her.

I called the Chapter Leader in Ocala Florida several times to help but she has not gotten back to me. I am very concerned about the mental well being of my parents.

 

[lpcarr]

It is so very hard, I cry alot. I too am watching my spouse deteriorate and there is nothng anyone can do about this horrible disease. Try to focus on what he can do and what they can do together. Make memories and take lots of pictures. Only God knows the journey that they will travel. My husband has had als for three years and is focused on what he still can do. So many helpful people here. Tell your mom to read the forum. She doesn't have to post alot, but so much info here to read about and absorb. Hugs to you and your parents. Hang in there and keep in touch here. Pam

 

[Gentleman Jim]

When you are in the middle of the forest and the fire all around is closing in on you, the only way out is through. Fire is all around you and you seek the best and the least painful way to make your escape.

To simplistic, maybe, however, four little words come to mind. “It came to pass.” I am old enough to know that waiting is an everybody dilemma. We all must look forward and must wait on something or someone. We are a dependant people. “No man is an island” Some may think they are, but if they live long enough, they will find out that it is true…

Keeping this short, I appreciate your thoughts and fears. However, pals are also watching their cals die. We just don’t think of it that way. 1 out of 1 dies. It is that simple. My pals name was Eddie, he died October 24, 2011.

I know being a Christian is debatable, but dying is not. So, Eddie became a Christian. We knew many people who came to see him who were going to die someday physically, yet were already dead spiritually. So, who really was looking at death?

Physically, Eddie suffered watching his family and friends visit as he physically grew weaker and weaker, but, he remembered we all die, maybe not today, but we are all dying physically.

Yes, the days are long, the nights are sometimes longer, but it came to pass.

May God help you all on your individual struggles with this terrible way to die.

 

[Danijela]

I do not know how old your parents are but apart from emotional support your mum is likely to need a lot of practical help. The two are, naturally, interlinked, and I have learned that if/when there is practical support it is easier to deal with the loss emotionally. Good luck. D

 

[notme]

Call the ALSA again--the woman here in Orlando is great. I'd suggest your dad go to the ALS clinic in Tampa--the university clinic. The doc there is just great. Dr Katzin is an ALS specialist.

The ALSA here has a loaner closet, too. Yes--you and your mom and dad will find all kinds of support here!

 

[Barbie]

It is understandable that your mom is in shock and an emotional mess right now because your dad's diagnosis was so recent. Things will get easier to accept, as hard as it is to believe. I think it would be great if they got on the forum--both will have alot of emotional support here and get lots of good practical advice. I think the best thing you can do for them is just be there and love them. Good luck to all of you

 

[HelenL]

I just wrote a post and this #&(# laptop bounced to another page and I lost it! Arghh!

Anyway, as we all learn to accept the news, we learn that we have life and living still to do...

If your Dad's voice is still strong enough, look into banking his voice so he can at least say some phrases in his voice later on. Many folks here weren't able to do that in time.

Good luck, and keep us posted.

 

[Atsugi]

mj95, if your dad is a vet there is great and fantastic assistance available through the VA in Tampa.