Panic time

[Debbie53]

HEllo everyone,

My dad called me yesterday morning, saying we need to write his obituary, look at his will, that he won't be able to stay in his assisted living place more than another day or two. Apparently, during the night, he couldn't talk at all, and he can't stand by himself. He just got accepted to Hospice a couple of days ago, and their people all seem great so far. He's gone downhill SO fast, and it kills me because he's been SO independent, upbeat, and engaged with the world - always. He was always the healthy one of the family, the good-humor man, the Masters Track athlete! I know he's 87, he's been lucky, but somehow hearing that over and over does not help. I don't have a place in my psyche for him being sad, terrified, emaciated. Losing my mom 3 months ago was, of course, a terrible blow. I'd say he was 50% stronger before that happened.:shock:

 

[BethU]

Debbie, I'm so very sorry your dad is in such bad shape. I hope hospice will make him comfortable and give him all the physical and emotional support he needs at this point.

You have such wonderful memories of your dad in his healthier years ... and it sounds like he is still the independent and engaged-with-the-world guy he has been for 87 years, despite this illness! He's still in charge, making arrangements, taking care of essential duties and paperwork, despite his decline ... that shows incredible inner strength. I don't think your dad will ever lose his "spirit"! He is one very special guy!

And he is blessed to have you there to help him through this transition.

Keep strong,
BethU

 

[MtPockets]

Debbie, I am so sorry to hear this about your dad. I pray for peace for you and your family as they face this time in his life. I know it very difficult. You are not alone.

 

[JACKIEMAX]

debbie, i understand your panic. my husband is only 72, and that is
young still to me. he, too, was the essence of good health and
activities. now, he is bedfast and can do nothing for himself. he
is also miserable and sad, and it hurts me to see him this way,
but there is nothing i can do for him now but keep him comfortable,
and assure him every day he is loved.

i am sorry you are going through this, and so many of us on this
forum, esp. in the caregivers' group, understand how you feel.

we are all one family here, and we offer you encouragement
and support.

jackiemax

 

[Debbie53]

The stress just builds

Thanks everyone, I appreciate your kind words and encouragement. Jackiemax, I guess you do know what I'm going through, from what you said. I'm sorry about your husband, too. This afternoon when I came back, my dad was sitting in his chair, and couldn't seem to wake up. It was like he was drugged, but he wasn't. It really scared me. We are trying to find him a bed at a nursing home, but so far no cigar. I don't know how he can stay at assisted living, they just don't have the resources, and the hospice unit at the hospital is temporary care only. Does anyone know if this is a normal part of als at a certain point - this extreme sleepiness?

Debbie

 

[Al]

Hi Debbie. Sorry your dad is not doing so well. Wiith ALS the chest and diaphram muscles weaken which can cause shallow breathing which can lead to a CO2 build up which can cause drowsiness. Patients are usually put on a Bipap when this happens but I don't know if that would be an option for him now. If he's already on one at night he may need it during the day as well. Does he have a Respirologist or Pulmonologist that you could talk to?

AL.

 

[califsand]

I have heard that extreme sleepiness can be a way for a person to prepare themselves to leave this world. How hard for him to have recently lost his wife and now be so sick... perhaps he would rather join her than go through a long and horrible battle with ALS. It sounds like he has had a very good life and I am sure it must be very painful to watch him become sick like this. Before considering life support, consider if he would want that... a fast progression may be a blessing for him, as opposed to spending years on a vent while his body becomes more helpless.

Take care,

Sandy

 

[Debbie53]

Wise words

Yes, it's probably "good" that he's going downhill fast (sounds strange). I finally got an appt. for him w/a new neurologist HERE for definitive testing. He is on oxygen at night only, so far. Thanks Al & Sandy.

 

[califsand]

It does sound weird to say it is "good" but I know what you mean. I have lost both of my grandmothers, one was sudden and a shock (heart attack in her sleep) and the other took 2 years to die from intestinal cancer. They were the first losses that I had known and were close together. I learned that losing someone fast leaves you with a different kind of sadness because you didn't get to say you loved them or anything. Losing someone slowly gives you the opportunity to say goodbye... over and over and over again. After losing my grandmother someone asked me what I thought was better and I didn't have an answer...

When my father first got diagnosed with ALS & the Dr. said he had aproox 16 months I was devestated. Grandmothers are sad but my Dad is another story entirely! I devoted myself to him, expecting to lose him quicker than I was ready for, and we had great times together. He has mystified his Drs by fighting for far beyond what they thought was humanly possible and has been ill for over 6 years now. I've watched each milestone of the illness and been there for him, saying I love you and goodbye to him each time I leave him, never knowing if it is going to be the last time. He has been bedridden for months now, unable to move and hardly breathe and he does not have any type of vent or bipap... but he fights. Watching him go through this for so long and devoting myself to him through it all, has been the hardest thing I have ever had to do. I always thought my 30's would be when I would begin to start reaching for my goals & dreams, but I've spent them watching my father shrivel. Some days I wish that his progression was faster, like so many that we hear of, because it is torture to watch such a vibrant and lively man go through this hell. At the same time I truly am grateful for the time I've had with him. The thing is, he's been sick so long that I think he is going to be in this state of limbo for the rest of my life sometimes.... and even sadder is that I can hardly recall the man that he was before he got ALS.

For your father's sake, and yours too, I hope that he doesn't go through a long and painful progression. In my experience, there is nothing more horrible...

Sandy

 

[brooksea]

Debbie,

Just want you to know I'm thinking of you and your Daddy. I hope he can be made comfortable and that you can find peace.

Sometimes words are hard to come by. Others have expressed my thoughts exactly.

 

[Debbie53]

I don't know what I'd do without this support group! So many times I'll tell people my dad has als, people who have known him well and for many years, and they'll just say, "oh, hmm - HOW old is your dad?" - as if that makes it reasonable. So few people really seem to know how truly horrific, how UNreasonable it is. I guess it is rarer than I realized. Anyway, thank you all! And wishing you the best possible outcomes too.

 

[brendapals]

Debbie,
My prayers are with you and your Dad. Yes, it is an UNFAIR disease and I guess we all have to make it the best we can. I know I wouldn't be the fighter that I am without this forum to vent some of my frustrations at times!
That was a long sentence, but I just wanted you to know I'll be praying for you-

Never give up,
Never let up,
Never lose faith,
brenda

 

[JACKIEMAX]

Debbie - My Husband Sleeps An Awful Lot Also, And The Hospice Nurses
Tell Me That It Is Due To Lack Of Oxygen Getting To His Blood Stream, Even
Tho He Is On A Bipap 24/7. They Tell Me He Will Go To Sleep One Day And
I Will Not Be Able To Wake Him, And When He Does, For Me To 'let Him Go' And
Not Try And Keep His Tired, Weary Body Alive By Feeding Him Through His
Peg Tube In His Stomach. Just Let Him Go Home And Have Peace.

Sometimes I Too Wish His Progression Was Faster Only Because Of The
Misery He Suffers Daily, Because We Have Not Been Married Quite 8 Years
And They Have Been The Best 8 Years Of Both Of Our Lives.

He Is The Love Of My Life, And Yes, This Is Unfair, But The Lord Will Help
Me Through It, If I Ask.

Jackiemax