Sad News

[Poco]

We saw the pulmonologist today and he told us Dick probably has less than 6 months left. We are going on hospice. He has a very aggressive form of als. I am having such a hard time with all of this. I feel like I am living in an out of body existence. Dick wanted to have his gall stones removed so he could just pass on the operating table.Thank God the surgeon said he would not do the operation because it is under control now. I told him I wanted to be able to hold him up to the end. I get so angry and then I hate myself for being like that. We are having a big family reunion at a resort her in Bend with all his family coming over the 4th of July from New York and Florida. He has such a nice family, 2 brothers and one sister plus all his kids and grandkids will be there. I know all of you with this disease must feel the shock that life went that direction. I am trying the live for today mentality but he is so weak that I finally gave up on trying to get him to go places. I needed to change my expectation of how someone lives when they have a short time left. I was looking for a movie story ending of getting the most out of everyday, traveling etc. It isn't like that. I just need to bring happiness to our home. This is just so sad. Thanks for listening.
Phyl

 

[Al]

So sorry to hear the bad news Phyl. You know you can come here to express your feelings and vent or get support.
AL.

 

[joelc]

I am sorry to hear this horrible news too. Please try to enjoy the reunion as best you can and focus on the positive! I know this is hard, but please try. I hate it when doctors say this - they tracked how fast I was declining and did not give me 2 years, that was 21 months ago and I am still walking and functioning quite well.....glad I refused to believe them! I am making plans to get a vent as I feel I have too much living to do yet.

Sorry for asking, but have you and Dick considered this option? Please feel free to come here to unload whenever you want, this site has a great number of people who are loving and compassionate who can offer support for you!

I will be praying for you both!

 

[trustinggod]

Phyl,

I am so sorry for the sad news you and Dick received today. How heartbreaking for you to hear those horrible words . . . "six months to live" for the one you love. I know that there are many here who will lift you up in prayer and also have words of comfort and encouragement to offer you. Please be sure to take care of yourself and find a way to get out alone or with a friend once and a while. I know you may not feel like you want to but it's very important for you if you want to be able to be strong to the end. Hopefully others who have traveled the road of 'caregiver' for a PALS will offer you advice as well.

I know it's very hard to stay positive after hearing that the end is near but please try to remember that every day is a new beginning and there is much to be thankful for. I realize many may not see anything to be thankful for as they or their loved one lives with ALS. No doubt about it ALS is the worst of the terminal illnesses as far as I am concerned however, you can be thankful that you don't live in a third world country and have ALS, Dick can be thankful that he has you to care for and love him, some PALS must enter a nursing home because they have no one to take care of them. Dick can also count his blessings represented by his grown children and grandchildren. It breaks my heart to read some of the postings on this forum from PALS who are so young and have small children to raise. I thought my friend was young at 41 when diagnosed but have since learned of many PALS in their early to mid 30's. Before joining this forum late last year I understood this disease to be one that primarily affected older men. I was so wrong.

The hospice team assigned to my friend was amazing. Although at first it was hard for Linda to feel comfortable having anyone but me or her husband take care of her personal hygiene needs after just a week or two she felt completely at ease with the CNA and RN. They treated her as if she were one of their own and found many ways to make her more comfortable.

I hope some of this information is helpful for you.

I will keep you both in my prayers.

God Bless you.
Jeanne

 

[Paty]

I am so sorry Phyl for such bad news

Hi Phyl:

I know exactly how you feel, I am my husband's caregiver and have seen him deteriorate rapidly, he refuses a PEG, refuses a BiPap he had Limb onset ALS, started with symptoms on June 2005 was DX on Oct. 17/05 and around Jan. 2006 we saw he had started with a slurred speech at this time he cannot speak, he can only move his head sideways while resting on a hospital bed here at home, it is so sad to have seen a healthy man all his life to finish like this.

I am with you, on my husband's case we don't know how much time he's left, because he refuses to be seen by any kind of doctor.

As trustingod says, you at least live in a first world country, here in Mexico we don't have all the advantages you have in the U.S. for such types of sickness, only few people know about A.L.S. only those who have had someone suffer the sickness, others when we mention AMYOTROPHIC LATERAL SCLEROSIS think we are talking about Multiple Sclerosis.

Well Phyl my prayers are with you and your husband.


PATY
HUSBAND'S CAREGIVER DX 10.17.05
BAJA CALIFORNIA, MEXICO

 

[ltr]

Phyl - Your post saddened me, so I felt compelled to try and think of how someone in your position could bring some happiness to their home, like you wish for. Too bad the doctors put a number on Dick's life like that, instead of telling you to make each minute count. Could you brighten each others day by bringing out old photos and laying down with him reminiscing and laughing a little. Or maybe reading or singing, whatever he likes. Try to think of the things you two loved together and maybe a way to bring it into your home. You can still have that ending you wished for. I am praying for you and Dick. Leslie

 

[saska]

Phyl, I am so sorry to hear of your sad news, and I will keep Dick and you in my prayers. As Joelc said, doctors so often give life expectancies that are just plain wrong. One thing, though, is that it is only with the 'less than 6 months' prognosis that Dick is now eligible for hospice, and hospice can provide great care and relief. Mike lived over a year in hospice care. And, although the hospice team will provide care primarily for Dick, they will also give you and your family support.

Best wishes,
Sharon

 

[CindyM]

Hi Phyl. I am hoping that the shock has started to wear off a little today. What terrible news! My htoughts are with you and your family. Cindy

 

[vmd]

Phyl:

...praying for you and your husband.

 

[Crooked Creek]

Phyl, not sure what I can say that will help. He's lucky to have someone so caring. I frequently feel my time will be up more quickly than most based on what has happened in my family. However, we need to embrace the sunrise and the sunsets, the warmth of the sun on our skin, the laugh of children, cheers at a sporting event, a dog's wagging tail and the love of our friends and family. Every day is tough, but it is worth it. We choose to fight as hard as we can. Every day we have to be thankful that we have some life left in us. Take care - be there for your husband but make sure there is someone there for you too - you need it - I'm sure everyone here would do whatever they could to ease the pain in your heart but I'm afraid we can only offer our thoughts and prayers.

cc

~0~

(my own version of a hug)

 

[emjoi]

Give him your love and time.
Bring him home now and again... he'll go stir crazy in the hospice. My father would come home very Sunday. He'd walk the dog, potter around his garden., listen to his music. His sons and their families would come over... remind him that he was still part of us.
And then Monday, back to the Hospice.

And yeah, you're doing the right thing with the reunion. Keep him part of the Family. Don't let him feel like he's Forgotten.