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NiKky

New member
Joined
Oct 18, 2011
Messages
7
Diagnosis
10/2011
Country
US
State
NY
City
Woodhaven
Katie, thank you for your kind words and yes, it was a late diagnoses and he is progressing fairly quickly.. The house in Cape Cod is easier for him to get around in since everything is one floor. Something the case workers, my mother, the doctors and the nurses have all agreed on, is best for him. There is also a support system for them up there for both of my parents, which would also consist of my sister & I being there every weekend.

Trfogey, I'm so sorry that I used a support forum to vent my feelings. You know nothing of my relationship with my parents other than the things I have vented in this forum. Therefore, if you want to misinterpret things or read only what you want, that's fine but, please keep snide remarks to yourself. Considering you don't know me, my family or our situation completely, I don't appreciate condescending input. Also, since it's a family disease, I would say it does affect me as well. So in the future when you try to "help" the child of someone with ALS, maybe you should choose your words wiser and try not to kick them while they're already down.

Barbie, sincerely, thank you for your kind words. You really did make me feel a little better, I wasn't even going to come back to the forum because I didn't want to read anymore comments from people trying making me feel like I'm wrong for feeling the way I feel. You & Katie are right and all I can do is take it 1 day at a time (even though that is easier said than done) & that's what I plan on continuing to do. It just sucks when you have no one to talk to about this stuff & when you think you found multiple people that might understand, I have to be judged and ridiculed before I find someone who actually kinda gets it or isn't such a jerk to me because of how I feel.
 

corbster98

Active member
Joined
May 18, 2011
Messages
39
Reason
Lost a loved one
Country
US
State
NC
City
Fuquay Varina
Just a brief comment. If this post is at all representative of how the interaction between you and your mother typically goes, I can understand why your mother keeps you in the dark. This situation is about your father, his needs, and the care necessary to meet those needs. It's not about you or your need to have input into the process, or your need to be informed in advance of what treatments your father gets and when he gets them, as if your approval is required before everyone moves on to the necessary business. Like it or not, you aren't in charge of this process and, from the looks of things thus far, that's probably for the best.

If you are going to make your support for your mother -- and through her, your father -- conditional on meeting your needs and not theirs, I predict that you will have a very rough time of it. You have a lot to learn about this disease and a short time to learn it, so you would be well served to spend much more time listening than you do talking in the near future, even if the person who is teaching you does mispronounce your name. Stow your ego in the closet and learn what you need to do to make your father's life easier and better. It's not about you. It's not about your mother. It's not about her relationship with you or her relationship with your sister. It's about your father, and the sooner you refocus your attention there, the better.

Good luck to all of you.

Nikky,

I understand that you are taking what trfogey is saying to be "harsh". However, I don't think his intent is to be harsh, but I percieve is his words to be brutally honest. He is trying to get you to step outside of your own wants/ needs and view all of this from a different perspective. As hard as it is to hear, you can't be the focus for your parents right now. You really do need to allow your Mom to "handle" this crisis as best as she can and forgive her when you feel that she isn't handling it like you want her to. I know all too well that everyone is often overly sensitive in relation to handling the disease. There is no right or wrong way to process this.

I am also the daughter of someone with ALS and just like you, I have always been daddy's little girl ( even though I am 36yo). I just learned of my Dad's diagnosis back in May- though he was 1st diagnosed in Oct 2010 and then had a 2nd confirmed diagnosis in April of this year. He didn't even tell me in person, but rather told my husband first and then emailed me a letter to explain that he had been diagnosed and what that means. He gave my husband the information first because he wanted him to be there to support me- as he knew I would take the news hard. To be honest, my first reaction after I stopped crying my eyes out all night was to feel slighted that my husband was given this information before me. I was feeling upset with my Dad that not only did he tell my husband before me ( and then asked my husband to not tell me until Dad was ready) but also knew of the diagnosis for months before he shared the news with me. I felt cheated and lied to that BOTH of my parents knew this family was facing this and nobody told me. In fact, they pretended that life was normal.

The first reaction for many of us as our lives are turned completely upside down is anger. Anger is a normal part of the grieving process and there isn't a much bigger whammie in the world, in my opinion, than to be told a close family member has this cruel disease.
You are more than allowed to be angry, sad, hurt, frustrated... I understand that it is hard to not be in the loop of information. My parents aren't telling me everything that is going on- even though I ask and they know I want to be included. However, as much as this is a family disease- there is no doubt that this is hardest on my Mom and Dad. It is important to learn to be less needy at this time and be strong for your parents. Now is not the time to try and have it your way. Your Mom and Dad love you very much I am sure and are handling this the best they know how. That doesn't mean they are handling it the way you would... but you are not walking in their shoes and right now it would benefit them for you to be there for them in the way they need you to be.

I am proud that you love your Dad so much and want to be involved. Keep loving on your Dad and help support your Mom without too much judgement at this time. They both need your emotional support more than ever right now.
 

Jeff Long

Distinguished member
Joined
Jul 21, 2011
Messages
254
Reason
PALS
Diagnosis
10/2011
Country
US
State
NC
City
Raleigh
Corbster,
All good information, but here's what I took from your post:

In his darkest hour, your Dad still made sure to protect you (waiting to tell you until the confirmation) and to support you (through your husband).
I'm not big on swearing, but that makes him one helluva great Dad! I look forward to meeting him next month.
 

corbster98

Active member
Joined
May 18, 2011
Messages
39
Reason
Lost a loved one
Country
US
State
NC
City
Fuquay Varina
Corbster,
All good information, but here's what I took from your post:

In his darkest hour, your Dad still made sure to protect you (waiting to tell you until the confirmation) and to support you (through your husband).
I'm not big on swearing, but that makes him one helluva great Dad! I look forward to meeting him next month.



I couldn't agree more! My Dad has always been my protector and I knew that he was still protecting me. He is my hero... always has been and always will be :) I hate this disease and hate that Dad is facing this... however, I feel honored to be able to support and care for him through the storms. It is the least I can do to begin to repay ALL he has done for us!
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,043
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Trfogey, I'm so sorry that I used a support forum to vent my feelings. You know nothing of my relationship with my parents other than the things I have vented in this forum. Therefore, if you want to misinterpret things or read only what you want, that's fine but, please keep snide remarks to yourself. Considering you don't know me, my family or our situation completely, I don't appreciate condescending input. Also, since it's a family disease, I would say it does affect me as well. So in the future when you try to "help" the child of someone with ALS, maybe you should choose your words wiser and try not to kick them while they're already down.

One question for you, Nikki -- do you plan on showing your mother the post you made here? I mean, you guys have such a close relationship that she can just shrug off the things you said about her, your father, and your sister in that post, right?

And you do plan to show your mother, father, and sister this website, don't you? After all, they need support too, don't they? A place where they can "vent" about the things that upset them concerning this disease? There's lots of good practical day-to-day information here that will make life easier for both your father and your mother. No reason why they shouldn't benefit from the place as much as you do, right?

Another piece of advice for you to ignore: saying uncomplimentary things about someone behind their back is not "venting". It is cruel and selfish gossip. It's also very adolescent and immature. Real grownups don't need to put someone else down to make themselves feel better.



Good luck to all of you.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
Hi Nikky,

You've received some excellent advice and different point of views from the members here, so I'm not going to add to that. I did want to say that though Cape Cod is about 1 1/2 to 2 hours to Boston and world class hospitals there, I'm not sure there is an ALS facility on Cape. But Compassionate Care ALS is located in Falmouth, so if your Mom and Dad do decide to go to the cape for even just the winter, they should definitely contact that organization, it's been wonderful to me. They can help make the house handicapped accessible for your Dad.

One other thought I had when typing this: even though your Dad is sick, unless he has FTD, then his wishes should try to be honored whenever possible. Perhaps he doesn't want his daughters to have all the information that the two of them are dealing with. It's always "easier to apologize afterwards than ask for permission first" scenerio.
 

ruthiep

Distinguished member
Joined
Feb 28, 2011
Messages
174
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
AL
City
Enterprise
Nikky,

I’ve gone back and read and re-read your posts and all the amazing responses (whether you like them all or not) and I’ve been trying to come up with wonderful words of advice considering I have two daughters who are 23 and 25. Like you, their dad has been diagnosed with ALS. Like you, they are both “daddy’s little girls”, heartbroken and grieving at the reality of this disease and their father’s imminent death. My heart breaks not only for them but also for you. Ya’ll are way to young to lose your dad! However, the comparison is now over! My girls totally GET the fact that their dad is MY husband. We’ve been married almost 26 years and have weathered a helluva lot storms together. We’ve got not only a tight-nit family but have also built an amazing relationship separate and apart from our children. This may or may not be the case with your parents.

The bottom line is this....while this disease does affect you and your sister, at this point you are not in the driver’s seat, just as my girls are not. My husband and I are the ones who sit together and discuss the inevitable down-the-road decisions we are going to have to face, feeding tube, trach, etc. We don’t discuss everything with our children nor do we feel the need to. I’m not trying to shut them out of the situation, there are just some things that are between my husband and I. Not only do I want to protect my girls as much as possible, I just really don’t need any more drama in this stinky situation, their opinions aren’t a requirement. Me/he will ask for their opinion when we wanna hear them. My husband knows what he will and won’t do down the road and the girls respect and accept that!. They both know that whether I like or agree with what Scott wants, I will nonetheless honor his wishes. All that being said....you need to take a step back! Like Jeff said earlier, neither of my girls better give ME a bit of grief during this process lest they have to deal with their dad and worse yet–ME! Sometimes I tell one of my girls one thing about their dad and the next day I may tell the other one something different. Oh well.....I guess they’ll just have to get over that in the long run! It’s just not that big of a deal. Let them talk between themselves-that’s what sisters are for!

Give your mom a break, she obviously loves your dad! Trust her experience and wisdom and realize that she will make the best decisions with regard to your dad, whether she keeps you informed and up-to-date and whether you personally agree or not!

Hang in there and please know that others are thinking about you and keeping you and your family in their prayers.

Ruth
 

mimipgm

New member
Joined
Nov 2, 2011
Messages
8
Reason
Loved one DX
Diagnosis
09/2011
Country
US
State
TN
City
Springfield
My mother was diagnosed with ALS in September. She was always so active and rarely was there a day that went by that she didn't take food for someone sick, send out cards to people, check on neighbors that she hadn't seen out and about in a while. Although she has taken care of hundreds of people through the years, she is resisting help from friends and even her family at times. She cannot even get up and down out of her chair or bed now, nor can she use the bathroom or get dressed by herself. My sister, dad and I are very eager and willing to do everything we can to help her, but it seems she just cannot accept this cruel disease. We are all frustrated and grief stricken and cannot believe our beautiful active mother is in the shape she is in. Each day we know is more than likely the best day she will have, because she appears to be getting weaker and her mobility is very limited. Could someone please advise me on what we need to do next? I have tried to get her to attend a support group but she refuses. She will not allow anyone to return the many good deeds she has done for years either. Could this perhaps be denial or embarrassment for others to see her this way. I am in counseling now and hoping this forum will be beneficial as well. I just am confused as to why she cannot accept the kindness from others that she has so freely given.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,563
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Mimi...it's hard to tell from your post but is your mom having cognitive issues as well as the physical ones? If so..it's quite possible that she is not accepting help because she genuinely doesn't see the need for it, even though it might be glaringly obvious to do. Check out the ALS/FTD forum on this site... there's lots of info plus links to some very good sites. At the very least it could help you to understand what might be happening, and be more at peace with dealing with it. Good luck to you and your family.
 

sallyb

Active member
Joined
Jul 19, 2011
Messages
58
Reason
Loved one DX
Country
Ire
State
Ire
City
Ire
Nikky, am very sorry to read of your dad's rapid progression and I think everyone feels and understands how horrible this is. I won't comment on the previous posts except to say that I am sure no - one wanted to cause you any upset and also to say that there are very honest and true sentiments in them. I think I understand a little how you feel - my parents withdrew from life for months and months before I eventually dragged it out of them. I too did feel some anger and confusion but the overwhelming feeling was one of grief at what they had gone through "on their own". I think it's such an overwhelming diagnosis that people process it at different "rates" and to their own abilities. They went through some of the grieving process alone together, and while I disagree with many of their decisions I have to respect their choices and just support them.
Clearly you love your parents. And difficult as it is I think you may be better off "parking" your upset about your mum sharing different information with you and your sister. Time is short, people are stretched to breaking point and perhaps it's better to avoid causing more strife - I'm sure your mum is just coping whatever way she can.
Good luck to your family.
 

Mrs C

Distinguished member
Joined
Jun 30, 2011
Messages
116
Reason
CALS
Country
US
State
MN
City
Rochester
This forum is for help, advice, and comfort. Take the positive that works for you and let the rest go. We are all in the same boat, we just handle things differently. Be there for your family, love them, cherish them, and forgive them, for it will be too soon that they are gone. Make the most of your dad's days, whatever it takes, because as with all of us here on earth, those days are numbered.
 
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