friends?

[rocmg]

well, i'm just off the phone to my best friend... we haven't spoken in nearly two weeks as i have been busy with mum and he has been working a lot. the thing is, we talked for half an hour and he didn't ask me how i was ONCE. he didn't ask about mum or how i was coping or anything. he spent the entire time talking about the great nights out he had last weekend and last night, and a new club opening he attended. then he talked about his relationship and how they've had another argument. i just listened and asked questions, and it wasn't until he hung up that i felt really hurt. normally we try to go out every now and then on a saturday evening for a glass of wine or something, but he didn't even ask me because he and his boyfriend were doing something together tonight.

my other friend hasn't been in touch for a few days either, even though we were planning a christmas shopping trip next weekend. she hasn't mentioned anything about that, but did find time to email me to tell me her friend bought tickets for them to go to Paris for her birthday. she's also very moody with me because sometimes we try to meet up and i can't because there's no one to look after mum. she doesn't really understand that my life is not my own anymore. that mum is my first priority and i have to schedule my life around that -- i am her full time caregiver after all.

i guess it just gets me down -- how do i make them understand that i need some support and understanding? how can i make them understand how truly terrible my life can get sometimes? i have hinted at it -- but it makes them uncomfortable and i feel uncomfortable for making them uncomfortable and then i'll quickly have to change the subject. it just feels like i have no one there to be strong for me. i'm just tired of being strong all the time -- but then, i'm not a talker and i do tend to keep a lot of my feelings to myself.

i haven't lived at home since i was 18 and i'm now 25 -- so that's pretty hard too.

*sigh* -- here's hoping 2010 will be a better year than this!

 

[shelleynshaggy]

Sorry to say I don't have a clue either. I called Jim's best friend of 20+ years a couple nights ago informing him on what's "new" - I asked him to please call Jim "just to talk" - his answer was - well when I do call Jim he says he's fine and he's not worried. Explained these are the FTD symptoms - no need to talkabout ALS or FTD or symptoms. Let him tell you about the girls, or talk football or the Cavs. No call.

My bestfriend of 32 yrs (I'm 34, she is 33) like my sister - has seen us once since the diagnosis. I have called her a couple times to go get a drink - just the 2 of us - still waiting!

Some people just can't handle this - and don't know what to say or do!

 

[Katie C]

Shelley, I think you hit the nail on the head about some people just not knowing what to do/say. Part of it is that when one faces the mortality of a close friend.. one faces one's own mortality as well. A lot harder for someone in their 20's or 30's than a 50 or 60-something.. though it's never easy.

Conversely.. we have had friends come back into our lives that we'd lost touch with over the years... old high school and college friends that have been huge support for me and for Glen. One friend has been finding more excuses to come up from Anaheim to visit his grandson. Yesterday, he stopped by and took Glen to get his haircut, stopped and picked up sandwiches for everyone. It was an amazing break for all of us! He even went with Glen on his walk so that was stress free too! It also pointed out to me that perhaps the time has come to hire someone for a couple hours a week so I can do errands, or get my nails done, or Kev & I can see a movie or go have lunch together. It's all one big learning experience.

My advice (if anyone's interested) is keep reaching out! Go beyond the obvious to maybe folks you haven't seen in a while. I keep a blog of what's going on so people are up to date, and don't have to feel uncomfortable asking questions.. it helps get past that awkward beginning part of the conversation! And when someone asks "How ya doing?" be honest. If "oh fine!" is a crock.. don't say it. Say "y'know, I'm kind of tired." And seek out support groups of people who are going through something similar.. they won't be as afraid of your new reality.

 

[thelma313]

My dearest rocmg,

I am so sorry that you are experiencing this. My thoughts on your friends are this: you are in your 20's! I hate to say it but the decade of life that you are in your 20's is all about fun and going out and very few people in their 20's have the emotional maturity to handle something like ALS unless of course it happens to a direct family member. I have a best friend who is like a brother to me. I have known him for over 20 years (I am 40 and he is 38) and he has been an angel to me. He calls and asks how I am doing every couple of days. He even brought Italian movies on DVD over to my dad and has just gone above and beyond the call of duty in many ways. His very own aunt died of ALS when he was 22 and he feels horribly now in retrospect that he barely visited her.

Sadly your friends, although I am sure they truly love you, are probably wrapped up in clubbing, drinking and shopping and all the drama that comes with being in your 20's. It's not that they are selfish people, it's just that they are in the most selfish decade of life.

It is grossly unfair that you are dealing with this at 25. I am more impressed with you than ever! I just assumed you were in your 30's (not because of your picture of course) but because of how you are handling your mum's illness and how smart and enlightened you are.

It just breaks my heart that you don't have enough time to go out and have fun and let loose with your friends but I am wondering if you probably give them the impression that you are always okay because you are so strong and independent. I don't think it would be a bad idea to just reach out and say your need some support. Have you ever just come out and told them that although there are certain things that you can't do because of your mum's illness that you feel like you really need to spend some time with them or talk about what you are going thorough right now. Perhaps they could come over for lunch sometimes or to watch a movie together at your house? Perhaps they just need a little nudging?

Good luck and keep us posted. I am so glad you can at least vent here on the forum.
Big hugs,
Rosella

 

[rocmg]

oh rosella -- thanks so much for your message. you really do have some of the best words of advice and encouragement. i'm kind of encouraged by what you said about this just being that selfish decade in life. of course they would want to help a little if they knew the full extent of how difficult it can be sometimes, caring for someone with ALS. but as you said, it's hard to really understand when it's not happening directly to you. it's not that i care about missing out on going to do all these silly, frivolous things -- of course there's no where i'd rather be than here, with mum, i've never felt anything so definitely or strongly -- i guess i just resent the normalcy of their lives to a certain extent. well, i'll get over it i'm sure. maybe that phonecall just happened at a bad time during a bad day.

to be honest ( and yes, from your photos!) i assumed we were in the same age bracket. it's sweet that you have a friend who's there to love and support both you and your dad. the forum is a real godsend in terms of venting!

thanks also for your advice Katie and shelly... i really do believe that ALS is too much for some people -- regardless of age. i'm sorry you have also felt letdown by friends. i'm not sure what sort of friend i'd be if the shoe were on the other foot -- i'd like to think i'd be supportive and understanding, but i guess you never can tell. ever since experiencing all this, however, it's made me a lot more humble and sympathetic to other people and families who are living with illness.

thank you all again for reading, and your input.
lots of love, r.

 

[thelma313]

"to be honest ( and yes, from your photos!) i assumed we were in the same age bracket. " Oh my goodness thank you. I am very flattered! I'm not sure I could pass for 25 but thanks for the compliment!

You are very welcome. I have totally benefited from and been blown away by your unwavering fighting spirit and your unfaltering commitment to your mum. You have always given me hope and whenever I feel that I can give you some support I jump at the chance. As you said this forum is a godsend. I don't know how I would have dealt with my dad's ALS all this time without it. Your contribution has always been appreciated!

 

[indigosd]

Can I unload just a little of my frustration? It is bad enough to be cast aside by "friends" but soul much more horrid when it is "FAMILY"! We have had so much more support from the forum family than our own genetic, blood families. Many of the people that I thought would be beside us have not been. People that I never expected to be with us have been. :] I am often so puzzled by the absence of the people that should be on this journey with us...Is it because they are frightened? Is it because they can not bother or do not care? Is it because they just do not understand that they will also be on this journey at some point...? Honestly, I feel my curly hair going straight when I see that family members can join causes like "Save the Dolphins" or "Stop Third World Hunger" or anything but they can not join ALS Guardian Angels and vote...they have time to forward me some stupid joke via email but can not take the time to write a little note that says-how are you and thinking of you... I believe that this is not a unique experience for me. I believe that it is the experience for most of us. Such a learning curve for me-the letting go. Letting go of expectations. Letting go of financial security. Letting go of perceptions. Letting go of the man that I love as he grows his wings...

 

[joelc]

Rest assured that you are not alone. This seems to be a universal problem.

Friends and family run and people you never would have expected step up. It hurts but that is life.

There are many reasons that happens. Some people can't cope with what is happening and are afraid. They don't know what to say so don't come around. Others can't cope because it reminds them of their own mortality. There are many more reasons, but let them go and move on.

 

[Gelthling]

ROCMG, we have discussed before how similar our situations are, and the friends thing is just another. My best friend of 20 years (I'm mid 30's...ssshhh) who would call me very regulalry ,I would visit every two weeks etc...since mums diagnosis goes months before calling to say hi, and then never asks how I am,or if she does,as soon as I start telling her she changes the subject. The other day they invited us for dinner (after two months of nothing) and her hubby didn't believe me when I told him mum was in a wheelchair fulltime and couldn't talk - My bestie said he just doesnt listen when she tells him - does she even tell him? We don't have many friends, but I always thought she would stick by me through thick and thin as I would her...maybe not the case! She was the one who initially suggested I started councelling so I could "Chat"to someone about my problems with mum. My hubby gets all my talk these days and he sees/ hears everything I deal with day to day adn understands to an extent.

Then indigosed, on the subject of relatives...dont get me started. My dad, who has been seperated from mum for over ten years is the only relo who truly has input or helps out. Her younger brother suggested we put her straight into a nursing home (she's only 55) so the family didn't have to put ourselves out her older brother crys everytime he sees her and goes on and on about his grief, neither have ever called me to see what has happened with dr's appointments or asked how mums going. My cousin (daughter of the older uncle) tells me how sorry she feels for her dad cause he's loosing his sister - I tell her he should grieve when she's gone ...and what about how we feel..I'm her DAUGHTER! Maybe I am the one who looks like I'm is coping and can get everything done...but behind the scenes I am at odds and an emotional wreck. I think unless you are dealing directly with this, I dont think some people can have a clear perspective of what goes on and how much a carer needs to be there physically and emotionally.

 

[thelma313]

I think that this plays out for me in waves. Sometimes, I do stop to think how certain members of the family have let us down. My dad's own brother has never once been to see him in the last year. They aren't very close but I find that appalling. Then I remind myself of the really great friends my dad has that are there for him and that support him every step of the way.

I think that some people are just not able to face this level of emotion and/or their own mortality. ALS is super intense. Think about it. It is for most people, the worst thing that can happen to a person physically and psychologically. It is so hard to even process. I remember first hearing of it and I was SHOCKED that such a disease even existed! Seriously what is up with ALS? It should be banned.

But in all seriousness, it really is a difficult and intense journey and many are not up for that challenge. I am lucky to have several friends that care for me like family. They all got together and bought me a big gift certificate at a spa so I could get pampered. The envelope was delivered to my house last week and I burst into tears with gratitude and surprise. Of course there are others, like some of my own cousins who have never been to see my dad. I just find that incomprehensible but I know that they are too afraid to see him the way he is now, unable to speak or walk and on his Bipap. It's their loss really because there is something so humbling about being in the presence of someone with so much courage and with such a soaring spirit. My dad is inspiring to me and I feel lucky to have seen this side of him. I wish I never had to but I am still humbled by him.

We need to, now more than ever, stay focused on who has stepped up to the plate and try to minimize those who let us down. It's not always easy but it's necessary.

 

[indigosd]

such truth my inspired and wise friend!

 

[abbas child]

ROCMG, not to let your friends off the hook, but as I've seen my family go through some very rough times recently (Dad took care of Mom who had dementia--she died Nov.27), one family who never called (which had me concerned) turned out that my sister-in-law has had breast cancer, double mastectomies and now reconstruction. All of which took place during the last year and a half, but she didn't want Dad to know or worry because his plate was already too full. As you can see, my point is that sometimes there really are heavy burdens being borne and we simply don't know about them. Best wishes to you... there are unbelievable people who come along and pick up our burden and have no direct reason for doing so. God bless them.
Ann

 

[Twinsmom]

I am continually amazed at the wisdom and grace that pours out onto these pages from my "new forum family"...Some of my own thoughts to hopefully encourage you ROCMG-

My whole adult life, I have prayed to be a woman who "lives with grace". As a young adult it meant just being able to handle the day to day challenges of being a professional, being a wife, and then being a mom. Over the years it has grown to include learning how to not carry resentment and anger when those that I "expect" will be there for me, aren't; (you know the typical mom, dad, brothers etc) It means forgiving, and accepting the love people can give the WAY THEY CAN give it.

It ALSO means (and this is big) Not WASTING my time, and energy trying to understand or convince those who don't "get IT" (insert whatever is currently happening for IT), or being angry/bitter/resentful. I find I am immensely more blessed by the friends who are my family and love me through this journey. My prayer of "living with grace" is definitely being challenged right now...as I attempt to love my husband through this journey.

As it has already been said, many people are not equipped emotionally to handle all that this disease brings with it. They aren't brave enough, or strong enough. Pray for them to find their own peace, because I promise...they are struggling with the reality that they aren't there for you-whether they can admit it or not.

Kay-I love your phrase you used to describe all the learning and "letting go"..but especially "letting go of your husband has he grows his wings"...breaks my heart and inspires me at the same time. I had not been able to find such an eloquent way of expressing my heart with that fact.

Peace to you all,