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pdcraig

Distinguished member
Joined
Mar 2, 2013
Messages
101
Reason
Lost a loved one
Diagnosis
09/2012
Country
CA
State
ontario
City
oshawa
It's been a really nice holiday season so far with my PALS, Ferd. I'm off work so no racing back and forth trying to balance work and visits and well, life in general.
There was one off kilter note, my visit coincided with his sister and her family. I try my best not to have that happen. He doesn't like large groups of people at the same time. Hard to follow everything and he has a difficult time trying to keep up communicating with his board. I got ready to go and he actually spoke and said, " Don't leave". The next hour and a half just left me shaking my head in disbelief.
I get that I'm immersed in this, I deal with him on pretty much a daily basis. They live closer to him than I do, they pass by on their way to work at least 3 times a week and are averaging about a visit every other month. I don't understand that.
They commented on his new wheelchair that's over a month old. As I explained the benefits, I could see I lost them, eyes glazing over.
Time to open presents. His sister contacted me to find out what he would like or needed. She bought things I told her not to buy, then argued with him about how could he know they weren't right if he didn't try them. They were a little miffed he wasn't more appreciative.
On to desserts. I had a bunch of things my aunts had sent up for him. They know he has a sweet tooth and all sent things with my mom. I was sharing things out and she asked if I had made everything. I explained where they had come from and she asked, " Why would they do that?". Why wouldn't they?
My family is 4 hours away. They've been trying to help in any way they can. Money, treats, visits, anything. They've been to the care facility. My father had my mother send flowers to the two women who share Ferd's dining room table just to say thank you for being so nice to him.
It's such a sharp contrast to how uninvolved and disinterested his family seems.
My cousin from Halifax, changed her plans so she could stop by on her way home for the holidays. My mother and her sister came to spend Christmas with us. My mom normally hosts the family Christmas dinner, 40 - 60 people. Cancelled with out a second thought when I told her I wasn't coming home. We got everything prepared and took Christmas to him. It was great.
Of his 6 siblings, four have visited once over the holidays. I don't get that.
I try and be understanding. We all deal with things in our own ways but seriously?
I could go on and on. Now I know why he didn't want me to leave.
I realize this is fairly tame compared to some of the other family stories I have read here.
Share, get it off your chest. Let's start the new year a little lighter in our hearts.
 
i wish i could explain it to you. maybe it's just a relief to have them on their way?
my stepbrother came in this house after our PAL (his mother) died and had nothing nice to say, including going so far as to ask my mother if she was going to get back together with my dad now that Kathy is gone.

i can only give you the advice my good friend gave me, you cannot control what others do, only what you do. rest assured that Ferd knows and is grateful and comforted by all you do.

<3

jen
 
I can't explain it either and have a bunch of stories, some hair raising, some just plain mouth-open-head-shaking too.


My kids all found out what the disease is and does. His kids and mother remained clueless and detached.

His mother did visit once (oh but she lives a very long drive away so one visit was actually very nice of her as they had never been close), and the whole time was like a comedy to me.

She would perch herself on a chair right beside his recliner each day when he went into the lounge for a few hours quiet time in the afternoon. Normally he would watch the tv and nap - she was told this. She would loom over his face if he closed his eyes, and would open them to her in his face saying - you can just have a sleep if you want - he would nearly jump out of his skin. Then he wouldn't be game to close his eyes!

The day he began to choke on some puree I was feeding him at lunch, she suggested he try a piece of the chicken we were eating instead ...

She would constantly remark to me how well he looked. (they would arrive around 10am each day, so would find him after 3 hours of solid personal care and sitting all clean and comfy in a chair)

The day she offered that she would bring him out to the verandah undid me though and I did have to comment to her. She got upset that he just kept shaking his head looking terrified when she wanted to do this. I have to paint the picture - Chris was 5' 10" and was walking with a walker, but walking isn't the right word. He was shuffling, barely, and it would take up to 10 minutes to walk through 2 rooms from lounge to verandah. He was adamant he wanted to keep walking. I would walk directly behind him and often just put a steadying hand on his hips as the spasticity in his legs combined with the incredible wastage meant his gait was totally uncoordinated and he had little control of it. She was nearly 80, less than 5' tall and was supposed to be using a walking frame herself but refused to. Walking at this point was almost terrifying, even for Chris, and within a week or two of this visit he stopped altogether and only did some standing transfers. She had no idea how to get him to a standing position from the recliner (it was a raiser but he could not stand unaided), and he had to navigate down the wheelchair ramp as well.

I commented asking her what she was going to do if he began to go sideways and she just looked at me like I was so rude.

When she asked me why his heels and ankles looked purple I started to explain about CO2 and her eyes glazed over.

Probably one of worst stories was the Saturday I was going to work all day (I had not been going out to work much for months and usually only a couple of hours at a time and there would be paid staff here). I agreed to work because his older daughter was going to be down and she said she would look after him. At this point he was walking unaided, but could not use his hands, could barely speak and had a peg.

She knew I was leaving at 8am, and she was up well before that, but lay on the lounge doing nothing while I raced around getting everything done, both for Chris and to prepare their day for them, and got off the lounge as I left.

I came home at 5.30pm to find her asleep on the lounge.

I discovered that the day had consisted of - she gave him ONE peg feed all day during the morning. She gave him a coffee, but he was only managing to drink less than half a cup at that point. The other daughter had come over, and the two of them then went out for a few hours. Yep, while she was there to care for dad, they went out! Obviously caring for him had been such a burden she had needed to sleep the afternoon away once she got back again.

I don't know how many times his kids said to me - I'm so glad dad has you to look after him. I bet they were too.

Jen, I have a reverse one on your story. A few hours before Chris passed away, the older daughter was here and she asked me if I knew his 'wishes'. I said yes, and she then proceeded to tell me that he wanted to be buried, rather than cremated (Chris had very strong views against burial), and he wanted to be buried with their mothers ashes held in his hands. I couldn't believe the conversation. I had been nursing him in end stage, knowing he was literally dying for the previous 4 days, and suddenly she is telling me this stuff that had never been even remotely hinted at by Chris and he is only in the next room.

They now often post on fb how lovely it is that mum and dad are back together, doing their happy marriage dance in heaven ....

OK, I'm not sure that stuff is real light, but I found 'family' on Chris's side at least to be gob-smacking so many times during his last year of life. They also stayed away from him as much as possible because it was 'too hard to see him like this'.


Tillie
 
pdcraig: half your story breaks my heart and the other half makes me want to sing with joy.

You are blessed to have your family and Ferd is too.

All families are different. Some are just awful. Many are just thoughtless. And, fortunately, most are wonderful.

I am thankful that at least your family seems to fall in the wonderful category.

Steve
 
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Jen, why do people say the things they say? I've had a few friends ask if I wished I'd never met Ferd considering how things are now? What? Do your mouth and brain operate independently? I'll try and remember that advice the next time I have to deal with his family.

Tillie, That willful blindness. It baffles me. Same sister took him to one of his clinic visits. I couldn't get the day off work. She dropped him off at the door and left. Told him to call her when he was done. When she dropped him off that night she said any time you need me to take him no problem. When he told me what happened, I almost exploded.
If one more person tells me I don't understand how hard it is to " see him like this" I swear...

Steve, My family are my family. It's all I know and I thought everyone was like us. It's my normal. I keep expecting is family to be the same.
 
With Chris's kids it was always all about them - how awful the loss would be for them, what they would miss out on. They never showed true concern for what was happening to him, how awful the disease was for him.

Yet, in his eyes they were angels, and he even wrote that it was them that kept him going.

We just do what we do for love, and I would do it all again in a heartbeat as having the short time I had with Chris before ALS struck was the best thing in my life and I would never want to imagine him having to go through this horror disease relying only on them. I am sure they would have put him into a facility straight away and pretty much left him there - all the while crying loudly how terrible it was ...

It's a good point to be thankful for the family that are there with their hearts in the right place :)
 
PD and Tillie,

Your stories break my heart and make me want to cry except for your own wonderful family, PD.
I wouldn't be able to keep my mouth shut and I'd just want to slap them. It's right that we can't control others but with what you all are/were going through I want to remind you both that you're amazing.

I was so fortunate that my kids loved Jesse and his were amazing as well. They are all supporting me emotionally today.

Hugs and respect,
Sherry
 
I have different story. My father, 75, together with his new girlfriend just bought a 'snowbird' home in North Carolina. His previous home was 2 hours from me and he now lives 7 hours from me and 10 hours away from my sister. He is now hurt that I can't visit him and see his new house. He can't understand why my pals(hubby) and I don't pop in the car and drive down there to see him. I explained that hubby doesn't send the night at other peoples homes anymore. He thinks because we stay in a hotel when we go to clinic we should be able to stay at his house as it's a one floor. Also he can't understand why I then just wouldn't come myself. I explained that there are some things my pals doesn't feel comfortable having our 22 year old daughter do for him. But my father continues to whine and beg that he wants me to see his house. Not that he wants to see me but I need to see his house ---his girlfriend has decorated it so nicely after all! Ugh!
 
Yep cody, it's so hard when it is perfectly obvious to us on a daily basis and just totally missed by the others. I'm sure you will get along just fine without seeing the new house, no matter how well decorated it is :lol:
 
Paul, Jen, Cody--I hope rebelling these stories here helps you let some of it go. Personally, I'd prefer slapping someone, but I'd probably just suck it up also.

The glazed eyes and "here you go again" looks really tick me off when people ASK. If you don't want to know, don't ask. ARGH.

Cody, how about telling your dad to give you a Skype or Factime tour of the house after asking if he's put in a barrier free shower, lift, and hospital bed so that your PALS can visit. I have a new response when people tell me I should get away: I tell them that I will when I can find someone else to sleep with my husband (and wake with him), and I'm not talking about having a stranger sit in a chair and watch him sleep (he's nowhere ready for that yet).

Tillie, I can only say thank heavens your MIL only visited once! As for his kids and their continuing thoughtlessness, I'd unfollow them on FB so I didn't have to see it.

Becky
 
True Nuts, I only have myself to blame if I do go look at their fb pages and see something I don't like ...
 
I ended up deleting Chris's fb page as it ended up they started putting up photos of his first wedding and saying lots of stuff and it did get to me ... of course not one has ever asked - hey what happened to dads page, I guess they figured it out ...
 
All I can say to this, is you must let the stupidity and rotteness of "family" go so you can enjoy life, at least a little.

I , too, have been asked stupid things like:

Why don't you divorce him?
Why do you stay?
Do you like having to take care of him?
Why can't you take an indefinite leave of absense from work?

Dumb things that have been said:

Steph can handle everything.
She doesn't need help she has a schedule worked out.
She is superwoman.
I don't know why you are helping, it is her responsibility.

Most of these came from supposed friends and Steve's mom. I have drawn a line....this is my house and my husband. Since you refuse to help, you aren't particularly welcome . Or I tell them to fend for themselves....I cook for Steve and my son. Now those that help and aren't a burden, I jump thru hoops for them. Steve's brothers and their families, and his dad help a lot. Whether it is taking Steve out for an outing or straightening my garage, they are like magic elves.I can't say enough good things about them.

Steve's sister comes to our area for a week and sees Steve for an hour. When we bought tickets for all our helpers to go to a hockey game, she got upset and tried to start a war. I told her it was a thank you to all who have helped us. That stopped it all.

Pdcraig, you must do what is best for your pals and you. No regrets because you have done your best. My neighbors, friends from work, and friends of friends have become our family. Family isn't blood, family is from the heart.

Peace and Happy New Year.
 
We just do what we do for love, and I would do it all again in a heartbeat as having the short time I had with Chris before ALS struck was the best thing in my life and I would never want to imagine him having to go through this horror disease relying only on them. I am sure they would have put him into a facility straight away and pretty much left him there - all the while crying loudly how terrible it was ...

It's a good point to be thankful for the family that are there with their hearts in the right place :)

I couldn't have let Kathy go to a facility. She deserved so much better than even I was able to give her. I don't want anyone to thank me. My father made a speech at the hospital. I was so uncomfortable. I never wanted thanks. I wanted one of them to say, "hey, take the night off. I'll be over to take a shift." But what use is my anger when she was really the one who suffered, not seeing her son?

jen
 
I agree Tillie...we do it for love.
 
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