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ccinjersey
11th February 2014, 00:24
I’m sure this has been a discussed issue here, hope you don’t mind me venting about it because it’s a reality I’m witnessing now. It kind of baffles and confuses me where everyone went? This illness is not the biblical times of leprosy so why are friends and family visiting my dear friend less and less or not at all ?? Beginning to wonder who is more uncomfortable, the person suffering with this dreadful illness or the family or friend visiting? I’m really not sure, and I really don’t get this.

Even if friends and family are being asked not to come pay a visit, should they respect those wishes? If they do then their loved one suffers more, and more alone. Bad enough this illness steals everything, should friends and relatives allow it to steal companionship and compassion as well ?

My beloved friends says she does not want anyone seeing her in this condition, and does not want their pity. She tried that nonsense on me, and I struggled with it (as you know) have to respect what she’s feeling, but she still is who she has always been, just with more physical limitations. I don’t see that as pity, just a fact. Shouldn’t close family and friends know and understand that, and not use it as an excuse not to be there? And just maybe somewhere in their mind they might realize that as easily as this is happening to her it could be easily happening to them.

I don’t know.… maybe I not seeing this in the right light, and really hate to judge, but I find it unacceptable and inexcusable that when the days of food, drinks and good times were long and plenty everyone showed up! Now that darker difficult days are here everyone scattered and buried their heads in the sand, the ‘out of sight out of mind’ theory.

I guess it really just comes down to one’s own choice to make, and it’s simple easy one in my opinion, to be there or not. Sorry, I know this post is in the wrong place, feels like I’m questioning, and preaching to the choir, because you guys experience it everyday, and show up everyday. Ok not sure if this qualifies as a rant, but if it does, rant over.

CC :(

fishmate12
11th February 2014, 02:56
Hi CC,

You can rant all you need to, your friends are here to listen,
The same thing happened to me, seemed odd to me at the time, but just live with it.
I had one close friend, an ex policeman, his father died from MND funny enough,
We used to drink together in the same bar, he then watched-out for me, as i got wobbly, (not drink)
He used to watch for me getting from car, my ex was driving, he'd get a lift home at end of night.
As i got worse, and felt uncomfortable using the walking-frame, i stopped going to the bar,
but he still came to see me every week without fail, he told me all the gossip that was going on still,
We'd sit out at the fishpond and feed fish, he was a "laugh a minute" real comedian.
Without any notice, he never came back, disappeared, no explanations nothing.
My sister lives 15 mins walk from me, stopped coming 3 yrs ago,
Just when you need people the most, they dessert you, for no reason at all,
It seems MND is like the plaque as you said, i just ignore it all, more reason to get my voice back
and be able to verbally tell someone what my loving sister is really like
The shame is on those who don't offer help to disabled, not on the person with the illness,
Take care, and do what you have to do, regarding your friend, you know what's best

Ray

magic
11th February 2014, 07:26
Oh what a sad thread but so important. I am with Peter and carers come and go. We do have some very good friends and, although son and siblings live 100s of miles away there are varying degrees of support. I have noticed that some visits are less frequent since Peter was unable to speak. People find it difficult to connect with him as he has a very wicked sense of humour and was languid and verbose in speech. He has not managed to use a communication aid well. I wish more people would call in but only if they brought a positive attitude. I get fed up of the pity overLoad and 'there there' mentality.
I have always believed that , in difficult situations, to do nothing may be the easy answer but it is rarely the right one.

Rant away

Magic

pete
11th February 2014, 11:59
Hi CC,

You don't need me to tell you ,because you are a true friend ,but I have to say MND affects us all not just the ones unlucky to have it but everyone around them ,as I have said many times not everyone has your level of understanding or the devotion to your friend ,and all of us change in time, some become self obsessed with what the future holds for themselves and their families ,other take the view that is down to a trigger and seek answers ,others simply cannot cope seeing a friend deteriorate in front of them ,it's not anyone's fault that some are able to deal with it ,others cannot. I have several friends who I put off seeing deliberately just to see how persistent they were ,what surprised me was most were some where not, I have no ill feeling at all to the ones who couldn't deal with my condition , having a terminal illness changes you whoever you are in ways that are not always ,good ones ,so the person they knew isn't the same person anymore because almost every single thing is changed some small some far to difficult to face ,better to have happy memories of what was than visit feeling alien and pitying the person you knew in better times . for me I try to remain as I was ,knowing how how much my families life has changed because of my illness . No one wanted this and no one ever imagined that life could change so much ,so expecting all friends to cope with this situation is wishful thinking CC, not all like you sadly.

Pete
XXX

ccvsd
11th February 2014, 15:33
We all have busy lives and will prioritise the things we feel we gain some benefit from.

So we need people to see our spirit and that we can inspire, good to be around. Offer them a two-way normal friendship. currently I feel able to help people gain perspective, enjoy life and emotionally support them. So I feel very included. Like your friend, and probably most people here, I don't see any need for pity. I'm still me, still enjoying life. So I don't give friends any reason to pity, I don't avoid the issue, I don't tell anyone I want to avoid it. I just get on with getting the most out of life and helping others feel positive about themselves.

Obviously tricky to do without contact, but can your friend phone her friends for a chat, be proactive and get over any anxiety which may make her reluctant? Can anyone take her out for a coffee or visit an arty gallery? She needs to find courage and purpose to enjoy her life.

A lot of my friends are on Facebook so it's easy for me to express support for them, arrange meet ups and informally update them to my challenges, usually with a touch of humour using social media.

I'm happy to be friends with anyone on Facebook. I hate to think of lovely witty, reflective Pete and your good friend feeling isolated. Personalities need an outlet so they can enrich the world!

caz
11th February 2014, 19:55
hi cc know exactly what you mean.i didn't see my brother once until he came to robs funeral.but I went up hugged him and said thankyou for coming because at the end of the day he was the one having to live with his guilt for doing bugar all. if you have read my previous posts you will know I was very mischievious with the eulogy and got a dig in to all the people that weren't there for us without naming names and there were quite a few guilty looking people lol.tomorrow is the first anniversary of robs passing and my daughters and I are going to her house and having a girly baking day.my mum rang today and for the first time in my life she said you know I love you don't you.she is a very reserved woman and I was really taken aback.i think everyone reacts differently but at the end of the day being the bigger person you can hold your head up high with pride. and shame on the rest of them..lots of love as usual.caroline xxxxxx

Jangobie
11th February 2014, 22:14
We have had a few people that have kept away, I just think that if they can't accept things as they are then we are better off without them. It is funny that people who you think would always be there aren't they. Mysteriously disappear but in cards etc say, we will be round to see you soon but never turn up.

Caroline, Will be thinking of you tomorrow, such a difficult day for you all. I am glad that you have your lovely family around you.

Love. Diane

caz
12th February 2014, 07:04
Thank you diane.Will try .live.caroline xx

ccinjersey
12th February 2014, 14:19
Thank you all for sharing those heartfelt stories. As always, it enabled me to see a bit clearer on this sad matter, and have a better prospective about it. Although I still can’t for the life of me understand how friend or loved on can abandon (I believe that is the accurate word for it) another friend or the one they love during the hardest times. SMH (shaking my head)

CC xoxox

This on is self explanatory from me to you :)

http://www.youtube.com/watch?v=bOqyygAQSX0

Chrissy
19th February 2014, 23:43
Hi All

CC this is such a sad thread for me because Bob retreated from the world and all his friends it was the hardest thing to deal with because they wanted so much to be with him, luckily I never lost touch with my friends and family because I wouldn';t have coped without them.
What we need to understand is that they are suffering and it really is about what they want, not us, I got it in the end but it was hard telling people that he couldn't cope with their pitying looks and sobs as they came in to see him...Regardless of what we feel, I know it's hard but it is about them and I feel secure in the knowledge that I did what he wanted me to do...Bless him,

ccinjersey
20th February 2014, 01:29
Thanks Chrissy, you did shed another light on this sad issue for me. I know these her choices, but what really gets my blood boiling is how easily everyone was able to just walk away, or not to pay a visit, or simply just check in and see how she is.

The day may come again when she will not want me to see her if things progress, but I will never be able to respect those wishes. It may be wrong, it may be right, I don’t know…?? To me it’s abandonment in the most difficult time of one’s life. It’s not an option I’m ever going to be able to give her, even if she is asking it of me. For me, I would never be able to live with myself. She is, and always will be my most beloved, soul mate friend regardless that her body is failing her now. One day all of our bodies will fail us, and I pray to god that those I love the most will remain faithfully by my side in whatever state this physical journey ends in.

Thanks again, Be safe on your big day!!
CC xoxox

ccvsd
20th February 2014, 12:44
CC, I think you are right. It is horrible revisiting friends or places since the condition deteriorates. But the watery eyes only last for a moment, then they are a comfort and a distraction.

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