Is this the end?

[califsand]

Thanks Cindy... just wish I didn't feel like I wasn't doing enough. I know I'm not doing enough and that I could do better but I'm so tired, ya know?

My sister sent me an update on Dad today. It seriously bothered me! She lives in Texas, only recently started calling to check in and knew that I was taking the night off from visiting Dad so I could have a breather. I was thrown off by an email from her telling me she had called to check on Dad & the nurse said he had a fever and all this other stuff. So there went my night off! I thought about going to check on him but called instead and the nurse told me he was fine, no fever, etc. I told her about the email update and she said "Yup, pretty weird!" One of my brothers did that once... he has gone to see Dad about 4 times in the past year and actually called me to tell me how Dad was doing. Do these guys think that I go there daily (except for an occassional day off) without knowing how he's doing? And why would they think that I would want to hear their assessment of his health when they check on him just 4 times a year or so? Have any of you encountered that situation? I told my sister that she shouldn't be sending me updates about Dad when I'm the one that is always there... I know it hurt her feelings but come on, she hasn't been there and her info was wrong anyways! She said that the nurse had given a med that I know to be a crisis med and that I have to authorize... well she had the medication information totally wrong because she doesn't even know what he takes or what it is for. Alarmed me for no reason.

Sorry, I'm tired. People frustrate me. They don't make themselves available but then they cause anxiety when they decide to show they care....... it's too little too late, they can't avoid the problem for years and then try to become a part of the solution when things are as far gone as they are at this point. Why not just say you care and show it in appropriate ways? Ugh

I better go to bed, my emotions are melting down.

Sandy

 

[Al]

Hi Sandy. Family can be such jerks. I hope you can develop a thick skin because you might need it later. Just know that your dad knows that you are doing what you can for him and appreciates it.

AL.

 

[brendapals]

Hey Sandy,
I sure hope you got some rest last night. Al is right, family can just be jerks sometimes.

I have a sister, 2 yrs younger than I am, that I might talk to once a week. And that's just since my diagnosed of ALS. Before that, it might be a month. She lives about 8 miles from us. When our dad was in the hospital back in 1981, he had complications from diabetes and was there for 39 days. She was not there one time. She said she didn't like the "smell" of hospitals.
Our mom had MS for 26 yrs. When she passed away in 2003, my sister nearly fell out at the funeral home when the worker said everything was taken care of. She couldn't understand why I had preplanned mother's funeral.
Now that I have my diagnosed, one would think she would offer to haul kids around, offer to bring dinner out to our farm, hell, offer to help clean out a closet, but nope.

I could write a book! The list just goes on and on. Get some rest, eat something, and keep doing all you are doing for your dad. You will not have any regrets.

Never give up,
Never let up,
Never lose faith,
brenda

 

[califsand]

Thanks guys,

I love my sister, we talk every day, she knows what's going with Dad because I update her all the time. Her email was just weird and out of character for her. It would be like my calling her daughter's teacher to see how she is doing in school and then sending her an emailed update on her daughter. She would think I was losing my mind! I'm very close to her and sometimes I do resent that she chooses to live so far away and not be more of a help. She's in Texas, we are in California... she comes twice a year and visits Dad a little but he has never let her help provide care because she is the baby. If the tables were turned I would have come home a while ago and helped her care for him... but she has admitted to me that she couldn't handle doing it and his illness is part of why she continues to live so far away. She feels if she was here it would take over her life as it has mine. I understand that but can't help but resent her sometimes for being able to live her life her way as opposed to being a puppet like I am.

I have a pretty thick skin, Dad's been sick a long time and I'm managed, mostly, to respect and still like my family. Unfortunately, out of my fathers 6 children, only two of us have been a regular part of his care but it has been that way since the beginning. Dad wouldn't let anyone but the two of us help him and even that help he accepted grudgingly for a long time. Dad pushed everyone away and these guys are responding to that... one brother and myself dug our heels in until he finally allowed himself to lean on us. Now we are his parents. The others don't know what type of role they can have because of Dad's previous behavior and at this point, my role is so long established as his caregiver & the one that makes his decisions that they don't have any responsibility. Seriously, if I ask them for opinions about something they usually won't even offer it, they just tell me that they know I will make the right decision.

It is hard for me right now to like people when I feel so alone. It is hard for me to respect that they have their lives where they get to take trips, do fun things with their families, enjoy their jobs, etc... .when I've been doing this so long and I have joy so seldom. It's hard for them too because they know the sacrifices that I have made over the past several years and my selflessness makes them feel guilty. They don't like to tell me about the fun stuff they are doing because then they always ask what I've been up to and the answer is always "work & dad, you know that". I hate myself sometimes that I cannot hold a conversation that doesn't come back to Dad and that doesn't impart guilt to those that don't have the burden that I do. I'm getting to a point of not answering my phone half the time because there is no point, I have nothing new to share or talk about unless it involves Dad's health and I don't want to spend all of my time talking about him and thinking about him. Then there is the other side of things... I've always been the counselor to my family & friends, they come to me with their problems and I've never minded that but right now it really irritates me. The problems are so petty next to what I am seeing each day with Dad and in my own life because of it. I just want to shake all of them and tell them "quit acting so helpless!" Because watching Dad I now know what true helplessness is...and none of these guys or myself is helpless against anything but terminal illness and acts of nature. The rest can be overcome, the rest has solutions, there are no solutions here. Being a solution oriented person since my early childhood, ALS really mess with my ability to cope because it is the first thing in my life that I have encountered where I am truly unable to correct it.

Sorry, I'm in venting mode. If I could call in sick to work I have no doubt I could write an entire novel about helplessness and solutions lol

Have a good day,

Sandy

 

[califsand]

This Rob Thomas song is my salvation right now... if you haven't heard it you can find it here: YouTube - Broadcast Yourself.. It brings me peace and I sing it on my walk to work

"Little Wonders"

Let it go,
Let it roll right off your shoulder
Don't you know
The hardest part is over
Let it in,
Let your clarity define you
In the end
We will only just remember how it feels

Our lives are made
In these small hours
These little wonders,
These twists & turns of fate
Time falls away,
But these small hours,
These small hours still remain

Let it slide,
Let your troubles fall behind you
Let it shine
Until you feel it all around you
And i don't mind
If it's me you need to turn to
We'll get by,
It's the heart that really matters in the end

Our lives are made
In these small hours
These little wonders,
These twists & turns of fate
Time falls away,
But these small hours,
These small hours still remain

All of my regret
Will wash away some how
But i can not forget
The way i feel right now

In these small hours
These little wonders
These twists & turns of fate
These twists & turns of fate
Time falls away but these small hours
These small hours, still remain,
Still remain
These little wonders
These twists & turns of fate
Time falls away
But these small hours
These little wonders still remain"

 

[CindyM]

Nice song, Sandy. BTW, your family is not the only one to handle a crisis like this. I see my Mom 3-4 times a week, and the others go once a year. But to hear my sisters talk, nobody knows more about how she is and what she needs than them. I always chuckle to myself- aparently their 20 minutes visits once a year are much more productive than the hours I spend every week, LOL.

Al is right- we need thick skins around these folks! :-D

 

[califsand]

So true Cindy! Normally I would chuckle and keep my feelings to myself. Don't know what's wrong with me, I just can't take it anymore.

I've done a lot of thinking about anticipatory grief... it is not something that I had ever heard about or thought about before but I've done a bit of research on it these past years. All of us caregivers probably suffer from it from time to time, where we focus on how we will lose this person we love instead of focusing on now. It is really hard to focus on now when someone you're close to is terminally ill. In the beginning I suffered from severe anticipatory grief and I cried a lot. Now I don't cry, about ANYTHING. I hope for it to end soon. I anticipate having the ability to grieve and I refuse to do it until he is at peace.

I think that my siblings and other family members suffer from this too, in varying ways, and I try to be compassionate about it. My relationship with Dad has made it possible for them to live their lives with less guilt and worry than if I had just run away, as I have had so many fantasies about doing.... however, because my skin is thicker than the rest of them, I've hung in there through thick & thin with my Dad. Somehow recently, after so many close calls and warnings that he wouldn't make it through the night, my mental stamina became worn. This has nothing to do with anticipatory grief, it's post traumatic stress disorder, or something like it. I watched him die a week & a half ago only for the nurse to shake him until he started to breathe again. Technically he didn't die because he started to breathe but tell that to my psyche! I'm walking around in a state of shock or something, all the time now. ALS shocked or Post ALS Syndrome... I bet that those could be real diagnosis! It's an ebb & flow. There is no possible way to care for someone for this long (more than 6 years) and go through all of the ups & downs, the close calls, the scariest of scary moments and be okay... if I was okay, there would be something SERIOUSLY wrong with me! I just hope that the bitterness I feel towards people in general, fades, because I don't like it and it is NOT who I am.

Well, time for dinner & then off for my nightly visit. Have a good night.

Sandy

 

[CindyM]

I bet you will get your equilibrium back when you get a bit of a reprieve. You are so right- there probably is a post-ALS syndrome! Certainly you have ALS overload right about now! :-D

Hugs, Cindy

 

[brooksea]

Sandy (and all others that are going thru this!),

It amazes me that there is not something automatically in place to help caregivers with the stress that accompanies caring for a pALS! Yes, there are various few respite programs, but I can't imagine many cALS take advantage of those.

As for the ALS Association, (that I have talked up on this forum), I've lost a lot of faith in their organization. But perhaps other area chapters are true to their word and offer counseling to caregivers/families/children of pALS.

Sandy, I wish you well.

 

[califsand]

There are lots of things in place and I've used them for sure. ALS organization hasn't been much help but then again, I haven't asked them for anything. Hospice has been the life saver for me! My Dad lives in a hospice house and hasn't lived with me for almost a year now... and while it HUGELY lessens my responsibilities, it doesn't remove me from his daily care. My reprieve will only come after he passes away and it will be a sad and horrible time... best not to think about because that good ole anticipatory grief will rush in!

I don't do counseling even though I have 2 counselors assigned to me. I don't have time and I've talked to both in the past but it didn't help make things any better. I have lots of people to talk to but the more I talk about it, the more messed up I feel. Imagine that huh? I think it is because my mind is focused on my Dad far too much and there is nothing left in life really... just small moments and they are too small.

Serious ALS overload but I can't seem to stay away from it... I need a vacation from my life and from my brain! I understand now why people run away from responsibilities... and I envy them their selfishness sometimes. Sounds bad huh?

Well, it's late... better go eat something and go to bed.

Sandy

 

[Debbie53]

family

:evil:Sandy, I do know what you're talking about. I, too, am the one who spends hours a day with my dad (which I don't regret, either). But when my sister-in-law calls me up after seeing him for the first time in a month and starts telling me what we should do for such-and-such a problem, my head feels like it's going to burst and I can't get a deep enough breath! For days! Since they live even closer than I do, (a 5-minute drive) you'd think they could make it over more often. Of course, when it comes to worrying about his will, possessions being given out, etc., they're right there. I sometimes wonder how they live with themselves . . . it was the same with my mom before she died. I always attributed that to the fact that my mom had become withdrawn and could be difficult, esp. towards the end, though even then, I didn't understand how they could stay away so long.

But my dad! The man is incredibly upbeat, interesting, kind, curious - everyone at the assisted living place loves him. But his own son can't be bothered. I just cry for his sake. He never mentions it, except to say that my brother's headaches have been particularly bad lately. (Yes, he has chronic headaches, but he grocery shops, does laundry, drives, does some gardening. He could sit with his dad for an hour a week!) I have fibromyalgia and never feel good, either. But we can do what we can do. So I understand completely why you're angry.

 

[JACKIEMAX]

JUST WANTED TO SHARE WHAT THE DRS AND NURSES ADVISED ME
ABOUT CONDOM CATHETERS VS. INSERTED ONES. THE CONDOM
CATHETERS ARE BEST THEY SAY AS THEY CAN BE PUT ON AND
OFF EASILY AND EMPTIED DAILY, BUT THE INSERTED ONES WILL
MOST LIKELY CAUSE AN INFECTION (urinary tract) SO WHEN THE
DAY COMES WE HAVE TO USE ONE ON HORACE, IT WILL BE
A CONDOM ONE.

JACKIEMAX

 

[CindyM]

Hi Debbie and Sandy- you are so right that caregivers do not get enough help! You all have an elevated status of angels, IMO.

 

[califsand]

Hi all,

Dad has been using the condom cath & I think it's helping. They also started to use an air mattress on his bed yesterday because he has developed a bed sore & even though they move him from one side to another every 2 hours, his hips are red and sore looking I've been called over there in the middle of the night a couple of more times now because they thought he was breathing his last breaths, but he has pulled through. I know he wants to hang in there to see my brother's baby born and that's just over 2 weeks now until the due date. We all hope that the baby is early so that Dad can have some peace... his strong will is an amazing and awe inspiring force for sure!

It is almost time to put him on heavier medication and to withhold his feedings... if he wasn't trying to hang in there to meet the baby I may have already decided on it. It is almost impossible to manage his pain and axiety without doing something like that at this point. By waiting to sedate I feel that I am doing what he wants in helping him to hang in there. He is already on a morphine pump and it is at a pretty high dose, but his pain & anxiety still overtake him at times. It's becoming more frequently that he has bad days and it kills me... but I told myself I would take it one day at a time. Once we change his meds he will be gone soon because we will withhold his feedings at the same time. I'm afraid of those days, so badly it's not good to think about too much yet.

Are any of you afraid to go to sleep? I go through phases with it and I have a history of insomnia so I take ambien... half of one a night usually. Anyways, lately I take it at the normal time and then find myself not wanting to lay down or turn off the light. Once I lay down I'm asleep within minutes but I seem to wait until later & later each night to do that. It's very weird! I've had a few times where when I started to doze off I jerked awake because I thought I was dying... not rational, likely just another side effect of the stress but jeez! I have had dreams lately that Dad passes away and then I am told I have a terminal illness. Sure makes sleep, which is normally my FAVORITE activity, into a fearful part of life. Bummer.

Well, time to go see my Dad. Have a good night.

Sandy

 

[chrismaya]

Sandy, your dad sounds like my mom............so many times I thought "this is it," only to have her keep fighting. She even amazed the Hospice nurses. She passed on 8/31.

I am so sorry, and I totally KNOW what you're going through. I'm an only child w/four children. I visited my mother every day for the last month of her life. Talk about your head spinning!

As hard as it was, it was the BEST month of my life, as we grew closer and healed past hurts.

God bless.