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Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,827
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
If you've read through roll call, you know my FIL is soon about to gain his angle wings from Cancer. Brian is doing better today than any other. DD and I were at the hospital to see him and he's not truly awake. I was able to facetime with our son, so Brian could see him.

Brian's been having anxiety attacks with this, but for whatever reason seeing his dad in the shape he is now, didn't cause one with our son here. Maybe he's gotten to the acceptance phase.

It's interesting because the particular SIL that is so full of classic lines also could not grasp that I've been watching my husband die right before my eyes for 12 years now. Her main comment was "not like this" I was like when he had sepsis he was worse than this. She said well yeah. She truly does not get that her brother is dying, and there is no way I understand the emotions connected with it.

I also told her that I was with my grandfather when he passed. In the room, watched the last breath. Oh she says.

I don't think she will ever get it. I think when it comes Brian's turn, she'll probably be like - I didn't think he was that bad. Well, I have mentioned here before that with the years with the vent has put us in the comfort place like things won't change and i definitely think it's done that for her.

On a brighter note, after the Hospice nurse was done with my FIL and everything she needed to do there, I was able to privately pull her aside and ask her about her hospice and whether they work with vented patients. I told her the one I had contacted, and I had not found the contact info for this one, said that Brian wasn't eligible.

We had a really good convo and she is going to call me and let me know what she finds out. So very helpful.

Just feeling a bit down today with all that is transpiring and also trying to help DH as he has to watch this all from a far. He was always a take charge kind of guy and I know not being able to be there with his family is very hard on him.

Hugs,

Sue
 
So sorry Sue. It is A LOT to handle. I am glad you could facetime and that your husband is doing better.

Some people will never get it... When I set up Lotsahelpinghands. My BIL messaged and said "What is this about, he seemed fine when I saw him the other day." Really??? Fine??? He can't speak, he can barely walk, he is using a tube for nutrition... You call this fine?!

You and your family are in my thoughts and prayers. HUGS!
 
Sorry Sue. You and your family have been in my thoughts and prayers
 
Wow Sue, so much at once. I'm so glad you were able to do that facetime connection for Brian. I can't even imagine how he must feel. No matter what we know and live through with them as a CALS, we really don't know the inside of what any PALS truly goes through.

The SIL, oh I hear ya sister!

It was the same with all of Chris's family. I'm sure they were shocked when he died. What part of terminally ill they didn't get was beyond me, especially since Chris was such rapid progression. They would either zone out, or one would get quite angry with me for 'being so negative'. Um hello, being a realist, and in fact I never suspected or predicted he would be gone anywhere near so fast, so I was understating really!

Yep sooner, I would just boil inside when family would say - wow he's looking good really. Yup, turn up after I spend 3 hours doing everything for him and presenting him settled in a chair, and he looks ok as he now is not going to move or attempt anything while you are here. That's how he pretends he's more or less ok, and you are swallowing it because you want to believe it too.

I'm crossing everything that this hospice nurse can find a way to something for you, please let us know.
 
Sue, so hoping that if this nurse and her hospice can't help you and Brian directly, they can at least link you to someone who can. Fingers crossed they can!
 
Thanks everyone - seems we all have family like that. And they don't get it. They are not there watching us struggle to bathe and care for their family member. They only see the one gussied up and ready for a visit.

Yeah I don't get it either with no getting a terminal illness. They seem to somewhat get cancer, but otherwise nah. My FIL got it, as does my MIL. My FIL in one of his last days of speaking when all the "kids" where there told them "you have no idea what this girl goes through everyday" Fell on deaf ears really. I'm going to miss him so much. He has thanked me over and over to being Brian's side, for caring for him. He knows. He's told Brian to be good to me, not beat me up etc. I am so thankful he knows. They have no idea the love I have for my FIL.

Another of the SIL's, but she an outlaw-inlaw Brian's brother's wife. She took care of her Aunt at the end. She was saying yesterday that she would never, ever offer to do that again. It was the most horrible week of her life. The aunt was basically out of it as well. So I know she understands that small part, but still doesn't connect it to what we face with this monster on a daily basis.

What I don't get, is how they don't get that we are watching their loved one die a little more each and everyday. You think it's emotionally hard to watch it for a week, but yet watching it for years as we do somehow isn't. I almost want to say, how about if your dad stays like this for a year, 3, 6, 5 10, 12. Some have gone longer than I currently am, some it's so short, but they cannot even fathom that he would be like that for an extended period of time, but yet they don't see it being the case for their brother.

Thank you all for the hugs.

Hugs,

Sue
 
Ahh Sue, You need a 14 year old with no filter. My son actually talked about this with my husbands family. They didnt really get the agony of watching my husband change each day. When he passed away, my son said he was relieved and they got all nuts. He told them, unless you lived in my house, you dont know what dad needed. You just saw what you wanted to see.

When they were drinking heavily, my son said they needed to deal with everything in a healthier way like exercise, talking to someone, etc. I know some will think that forward, but they were skills he learned to cope.

I had my sister run interference a few times I was close to losing it.

We all have people who deny reality. I think it is the only way they can cope.
 
Sue, how are you doing today? You have so much going on...I wish I could offer some words that would help.

Those people who don't get it...perhaps that is the only way they can go on with their lives. Denial is a huge comfort, isn't it?
 
Sue, crazy isn't it ? How family all cope differently.
I've begun to scream internally & walk away sometimes. Can't go far though as my baby alarm has a short range.
Hope your day is better today? So glad that you could face time.
Hugs to you as you soldier on.
 
Well my FIL gained his angle wings today. I was able to be there as my daughter stayed home with Brian. It was my MIL and my 2 SIL there with him when he passed. It was very peaceful.

I then had to call home and tell my daughter and she told Brian. We were there a little while as the nurses confirmed what we already knew. Then headed here back to our home. Then then entire family came here.

When I walked in the room Brian started to cry. I held him. Then he got hugs from my MIL and SIL's. Each of the family as they arrived went in to see him. With some he would cry, like his brother. He was happy they were here.

The family spent time reminicing and looking through photos and such. They were in and out of Brian's room and gathered in the living room as well. The younger kids went downstairs to play.

It was a good afternoon. After everyone left, I was able to spend sometime with Brian and tell him that it was peaceful and how things went. He did cry again and I'm sure will throughout the next weeks. Fortunately, when I called our son, he and his wife were able to get here quickly for both Brian and my daughter and helped until I could get back here.

The hardest part was to not be able to be with Brian when our daughter had to tell him. That tore me up, but he wanted me to go to the hospital this morning.

Thank you all for your thoughts/prayers.
 
I am sorry for the loss and glad he gained his wings. I am so very glad you were abke to spend family time together with Brian.
 
So sorry for the loss of your FIL. I am glad it was peaceful and your PALS family surrounding him now when you both need it so much. HUGS!
 
I'm sure Brian had a lot of comfort knowing you were there with his father as you are the person he trusts most.

I'm so glad he was able to cry with a few different family members, and so the grieving starts :(

I hope you can find some time to allow yourself to feel your own feelings in all this, not just look after everyone else. It sounds as though you are a wonderful caring person all the way around xxx
 
So sorry, Sue, for your loss. It feels rare to really "be seen," and makes those who do truly see us so very precious. It seems your FIL was someone who did see you clearly and all that you do for Brian day after day. That was very special. I'm glad that you were there with him--the love and respect between the 2 of you was obvious. Like Tillie said, please allow yourself to grieve as it comes. Was so nice Brian had everyone there to share and reminisce and cry. It's a great loss for you both. Hugs.
 
Sue, I'm sorry for your and Brian's loss. It sounds like he was good support for you and I see that you will miss him. I'm glad that your PALS family was able to provide some comfort to Brian. Thinking of you.

V
 
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