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Reply by JennJilks

19 Nov 2015, 4:43 PM

Good for you!
Often times crankiness is a sign of pain. Just a brief thought...Pain Assessment and Symptom Management
A good death is one in which the four dimensions of dying are met:

Physical (pain control, breathing, fatigue, bedsores),

Spiritual (accepting death, doing a life review, seeing meaning on one's life, finding peace),

Social (being conscious; communicating with family/friends, careworkers; communicating needs, wishes; sharing thoughts, feelings; having closure; saying farewell; a quiet, private atmosphere) and

Emotional/psychological needs (accepting help; not being a burden; being peaceful; having self-esteem; enjoying simple pleasure by releasing hope by gaining peace; making choices).

There are other types of pain, depending upon its causes:

anticipatory pain - fear of the unknown, expected experience, causes fear and anxiety

incident pain - when a patient is shifted in bed

remembered pain - triggered at certain times of day by particular past events

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Reply by Marymary

30 Dec 2015, 9:34 PM

Hi all - hope you all good and enjoyed the holidays to the best of your ability. We did real good over the holidays and still are. Son is doing good and his dad has been in good spirits and we are now awaiting appointments for his other issues as they call it complications or side affects from the radiation - he is not better but not worse as they say well I suppose that is all depending on how you look at it. His complications are over active thryoid and won't see specialist til jan 16 or 17th then he also has a stone in his ONLY kidney so I seriously do not know how they say he is no better or no worse??? I'm assuming they are referring to his cancer only not the other factors. He lost his left side of his kiney end of Dec 2013 due to kidney cancer and just about died like 3 times and he has lost 56-57 lbs and there is little they can do for him due to his immune system and his physical condition.

he eats liek a horse but due to the overactive thyroid no weight gets put on at all., none. Due to his kindey he has to drink a lot of water to help but he is not doign that much either., hasn't really for a bit so it is rather frustrating to stand by and not doing anything - it so is - I laugh at myself cuz sometime well AT TIMES I feel like I am a control freak or something - why??? Well everything is out of my control not a damn thing I can do or say...wait for appointments with the specialists and that is it. No one seems very concerned with the over active thyroid thing but me - I've researched the heck out of this and itcan affect the heart big time which really concerns me and all medications they may provide him with can take 8 - 12weeks to take affect and not only that they can damage his liver and with his immune system - Idon't know - I know I am jumping the gun here but how much more wieght is he goign to lose before they do anything? That bothers me

I know I am concerned about things that have NOT happened yet but when you've gone through this for how many years now (2+) - it's kinda like you can see things coming....not being a negative nelly but realistic - when you weight is so low (145-146) and you have no muscles, no immune system - nothing to help you out - WTH? do you think is goign to happen. I honestly wonder if they wait so long to....oh well doesn't matter.

Sorry to go on just feeling a bit frustrated that is all = wait and see is all we can do....Been doing that for over 2 yrs too - I think that is what takes it toll on me - the waiting - waiting - waiting.....but he is still here with us which is what we have been focusing on and Iwill go do that right now tooo - be thankful and grateful for that aspect - thanks for letting me ---vent

Hope your all ok - hugs maybe in NY will get back on - take care y'all

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Reply by NatR

31 Dec 2015, 3:00 AM

Hi MaryMary

i wanted to respond to your note. It's good to head that you are staying on top of caregiving and being a good advocate for your sons dad. It's a huge task and you are brave and strong.

i can tell you want only the best for him - that you are reading all you can, asking questions and wanting to be involved. What an admirable thing you are doing.
sometimes it's so very frustrating to want to see improvements and results and even just staying in the status quo - and that is hard when you are so involved

I applaud you for your caregiving, and more importantly your caring.

hang in there and I hope the rest of this week goes well. We have only one day left in this year - so I will wish you A Happy New Year. It's hard to know just what the right thing is to say to those who deal with serious illness and so much responsibility on your shoulders - but I want to wish you the best - and take it one day at a time

to all readers on the forum - I hope you have a good start to 2016. We are under a fresh blanket of white snow with a sprinkling of "diamonds" reflecting in the street lights tonight
i wish I could sprinkle each of you with that Snow Diamond dust. We all truly know how valuable caregivers are to their loved ones

so feel the warmth and thoughts tonight
best wishes
NatR 🎉😃⛄️🎄❄️

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Reply by KathCull_admin

03 Jan 2016, 2:08 PM

Hello everyone,
Marymary so glad you let us know how you and your family are doing. Waiting.... such a familiar place for people here. And the uncertainty of different messages - keeps one's heart on a roller coaster. It does take a toll - have you found strategies that work to help keep you on an even keel?

Dee46 – It’s been a little while since you were able to post - how are you doing? Your family?

JennJilks were you with family over Christmas? I am thinking you had your iPad or camera at the ready:) Your pictures always tell a story.

Carlyn, I was re-reading your posts – on ‘thinking of you’ – those are such supportive words – I realize they mean more than we think. ‘New’ or ‘better’ words are not necessary are they – it’s those words from the heart that can bring comfort.

Razz, we have known each other for a while now but it is only this morning that I find myself curious about your nickname! How was the Christmas season for you? Did you manage to get some down time to relax and rest?

NatR, I too have spent time thinking about what to wish for people over the Christmas season. Some of that related to political correctedness – which I am letting go as I get older:) and some because it can be a difficult time of year.

Take care all and look forward to continuing conversations in 2016.

Katherine

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Reply by Marymary

02 Feb 2016, 7:23 PM

Hi all - I so wonder how Dee is? Have we heard anything?

It's been a weird start to the NY. I am so unsure of what to think at this point - I so am.

Dr's say or do nothing really in regard to my son's dad. They are leaving him alone for lack of better words, no one wants to touch him - we'll just leave it be for now - if it gets worse then come back - we do and still the same thing. I do not understand that at all. We're talking all of them family physician, oncologist, kidney specialist, Ears Nose and throat specialist all of them - zip nata ziltch - dont' get it.

He has been so sick the last 2 weeks and he's gone to Dr like 5 times and nothing to be done. I have not attended these appointments. Oh it could just be a virus but we will not prescribe any antibiotics though - ya ok. He has not eaten since last wed. really - says he can't....I got dr to do blood test for an infection yes I have to tell the dr's what tests need to be done - I seriously can't believe this crapola. I had to do the same when it came to his thyroid and now this - give me a frigin break.

If you had to can you pinpoint one area that bothers you more than another, throat,stomach, mouth etc. - he said he can't...It is so flippin frustrating it is - can't say that enough. I do realize something though...

Dr's can Only do for him what he lets them know - got that yeah took me a while...but they can only do something if he actually lets them know exactly what the hell is going on with him. So??? I write a list for him to discuss with dr's and that is all I can do....I am so not trying to be as involved (standing back) sicence nov and also he said he's a big boy and can do on his own - true enough but geez louise. I do attend the specialist apptmts - just not normal dr's.

He's been so bad this last 2 weeks, our son and I had a long talk about this and he even said it's like dad has just given up mom. he is po'd at the dr's - why don't they do something mom and I said they can't do anything at this time - they are just letting it ride right now because of the way his body is. Even medicine. Regardless he (dad) says no to. No pain medicine, no no no - no to it all - even natural alternatives.

He has no immune system pretty much and he does not exercise he does not do alot of things to help himself. No freshair no short walks - no nothing. he will go if I push him like bug him more or less but I am so beyond all that at this point since Xmas - you know. I feel he has to start doing things on his own - he has to help himself., he has to do for himself. Like knowing he needs to walk everyday even if it is just across the street around the field and back again - he does not I remind him but he doesn't.

Xmas he told everyone he is in remission - where he got that I do not have a clue. The dr's just said he is even / stble no better no worse but he took it as remission. I saying he posted on FB even he HAD cancer but now he's in remission he was beyond excited. He said he was going to Ears nose throat specialist to have surgery / operation and in December me yep me had to remind him of our very first appointment.

It is inoperable - him no it is not they wouldn't send me to a surgeon if they aren't goign to operate - yeah we've seen him twice and he doesn't say nothing really...You will always have cancer in your throat - you will never be considered cancer free Wayne - they can not remove 2/3 of your tongue nor a portion of your neck that is why you will always have cancer, they can not operate on it - man did he get pissed off - holy moly. That was in December. He has all set up for him bcuz of my paper work (CPP/insurance paying mortage/line of credit etc).

Well in January, he cancelled that all and went back to work ya and been working since mid January and now he is sicker than a dog - he's not good at all. Still going to work and says he has too because he has no other form of income so....ya it is a vicious cycle - it so is.

I know he's sick sick now but he jumped the gun in Dec he said he's going back to work and I said I would hold off on that right now - jsut wait ok. But no he knows best. He is bored and can't stay home no more and if he's out living life he will be living the life. So...

He is an adult I can only suggest and now like I say I am beyond....so his son - he said himself what if dad is only doing his own thing even if dr's have said otherwise mom & I said that is his choice. Even since he went back to work he is sick mom - I know I told him and validated all his worries and concerns - they are all valid and I feel the same way but this is your DAD's LIFE. Not mine nor yours.

Nothing we can do - not a damn thing - your dad thinks he knows best - let him be. But mom he is cranky bad mood and sick....I told him I hear you but what can I do - what can you do., what can Dr's do??? I know dad is just sick and tired of being sick and tired and that is why he has gone back to work (smart kid huh!) This is all your dad's choice - not mine nor yours. Dr's aren't really doing nothing for him nor saying anything - but we can only go by what your dad is telling us - so this is all out of our hands at the moment.

We can help out around the house / meals, cleaning etc. and that is it. Other than that???

This is so very frustrating - beyond all & I have come to the conclusion I am not and will NOT be overly concerned and stressed about his decisions / his choices - they are his - NO I do not agree with them at all but what can I do. Arggggggggggggggg - I will go in nature - I will meditate - I will help myself first so I can be there for our child. I will do meals for him of course but other than that no.

I told him this morning - I will not be bitched at nor take any crap from you no more - his choices (work) live with them - your choice not mine - so do not take them out at me nor our son. If I hear you are - you will deal with me - we do not need this if you are going to be such a stubborn SOB & be as sick as you are - deal with it. I refuse to do anymore paper work for you - not that he has asked mind you but still. I set that all up so you have everything taken care of and you cancel it all and go back to work when your body is so NOT ready and now you are sick. So suck it up buttercup.

Sorry for venting - went off on a tangent obviously....thank you listening to my frustrations - that is what they are....No I am not bithcy or mad or angry just frustrated....I will go release some pent up energy lol - thank you for listening....

PS - we had it out a few times regarding his work back in Dec and he said he's doing it period and it would help him and he is not sick and he is in remission so there was no reason he could not go back to work. None

Ahhhhh life - huh - throws you stuff and hopefully it is not like a boomerang and comes back to you lol

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Reply by NatR

02 Feb 2016, 7:58 PM

Hi Marymary ,

i feel your frustration and stress as you are ready to throw in the towel

this is is so hard - suggesting, trying to guide, knowing your viewpoint is different from his - and feeling like you are running on empty.

my advice to you is - stand back and stop throwing so much energy away - because your patient cannot deal with, or understand what's really going on.

you should tell yourself you have done the best you can and you cannot do more.
i applaud you for your many efforts and sacrifice - but it's time ( in my humble uneducated opinion ) to just stop doing it all - and see what happens
I hope this bit of advice will help you get back on track - and take care of yourself for the next little while

don't take crap, and don't waste your valuable energy - until your patient decides maybe you had a point

you have done an amazing job - don't ever doubt that - but I just want you to remember your own health and well being
I hope this helps you feel a bit better - it's what I would do in your shoes
hugs and best wishes
NatR
ps - always do what your heart tells you :)
its easy for me to send a note - not walking in your shoes 😌
NatR👍🏻

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Reply by KathCull_admin

03 Feb 2016, 4:49 PM

Good morning all,
Marymary, it sounds as though you are between a rock and a hard place - even more so because your son's wellbeing is so important. Has your son’s father been offered support through any of the clinics and doctors he visits? I am thinking counselling supports? I know he may not be interested or feel that it is necessary for him. What about you and your son – are there people (perhaps professionals) who can give ideas and support?

I may be completely in left field here but I wondered if the article (or parts of it) Spirituality and Life-Threatening Illness might be helpful in understanding your son’s father. Let me know what you think. Just reading,

“If a life-threatening illness has intruded into your life, you are probably experiencing tremendous upheaval. Most of us spend much of our lives trying to avoid thinking too much about the end of life. Now, you may begin to evaluate your life and think seriously about death and dying, perhaps for the first time. You must learn how to live with your illness and the possibility of death. Even if you hold no particular religious beliefs, you may find yourself dealing with issues of a spiritual nature, such as identity, suffering and hope. What makes such issues spiritual is that they raise questions about the meaning of life – life in general and your life in particular. Your spirituality is shaped by the answers you give these questions.”

I haven’t seen Dee64 on any of the other forums Marymary.

I appreciate your wise words NatR – a person can get lost while caring for someone else who has seemingly overwhelming needs.

So… take care of yourself Marymary.

Katherine

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Reply by Marymary

03 Feb 2016, 9:26 PM

Thank you NatR and KathyCull - I so do appreciate your words - I do and I NEEDED to hear them!!

I know my own limitations and they have been reached as I told our son last night I will NOT subject myself to anymore crap for own health and sanity. He (son) understood and just wanted to confirm that I was still going to live in the house (poor kid)....I also mentioned to him that he has a right also to let his dad know he does not need to be bitched at for no reason, but in saying that let his oeds you type thing. He said he knows and will be having a talk with him.

Our son last night also said how scared he is bcuz his dad is not getting better only sicker and I just validate his feelings and emotions and let him know his emotions and feelings are normal and go with them and work out, go for walks, talk to me, talk to his friends/g/f and if need be we can go for counselling too. He said no for the counselling not right now ok mom.

We both said it would be good for his dad but he did NOT want to do it back last summer bcuz he does NOT need it and his old school mentality. I've offered numerous times to connect him with someone who has gone through what he is and first time yeah it would be a good idea but he never follows up he never to chooses to pick up the phone - like I say his choices.

Kathy I love that article but that is so NOT for him, I tried when he was really sick during treatment and afterward and he said he did NOT care - no reason for it, once he is dead he is dead he does not care after he's dead and while he's alive why do you talk of dying why does any of it matter. He told me not to share those things and he only wants to think positive so if you can not say positive uplifting things to me then don't talk to me - he does not want to think of dying or being dead period. He does NOT think that way.

So yes I gave up on that aspect last summer/fall.

As for me I will NOT be subject to negative talk no more. Since I let him know that he has let up. But then again he is in his room by himself. so....that is where it is I have to focus on myself so I can be there for our son....I will feed his dad help out around the house but other than that at this time....I have to do for me for our son - I feel real good about that.

At times I kinda feel like I am not being sympathetic enough but it passes lol.

I wonder if others on this forum have the same frustrations it can just be my son and I - when it comes to their loved ones? Hmmm? Them not listening or making things less than they are or be cranky or losing patience with the dr's...good questions huh.

Thank you both so much - I so appreciate it. ONE DAY AT A TIME -----Hugs to you both

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Reply by JennJilks

04 Feb 2016, 1:09 AM

I read what Nat wrote, and I think she nailed it!
You look after yorself first, then your son. Do what you have to do to make it through.
It's a difficult enough time in a functional family, never mind a dysfunctional one. And how many of us have functional families?!?
I thought mine was, but caring for my mom and dad nearly did me in!
You take good care, woman. Your son needs you. You deserve to be happy, too.
cheers from here!

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Reply by Carlyn

13 Feb 2016, 3:40 AM

Hi everyone,

Marymary... ((Hug)).

Ok I don't know if this is good idea do you think or you want to try it but this is one thing I did - I stopped asking "do you want to try....(xyz)" and just said "Ok we need to get you someone professional to talk with" or in other situations, i just decided and took it out of their hands.

Needed help to care for them at home? I just did it - hired or relied on CCAC. At first, parent balked. Once they saw how much help it was and how kind they were treated, made things a lot easier.

Next was a therapist. For your son...don't ask him, make an appointment, take him, leave him in there and go have a coffee until he's done. He doesn't realize how much it helps to have someone unrelated to both of you for him to talk to and he can say anything. That will, by extension, take a bit of load off you as he'll feel more supported and less anxious too.

They used to have therapists who would come to the home too. I'm unclear if that still exists but look into it. don't ask your ex, just set it up and let the therapist arrive, make sure it's all handled truthfully so the professionals know the situation you're in and what behaviours are going on - safety is a must. But look into this. And if it's available, do it.

The reason I mention this is because it both worked in every circumstance where I took the decision out of their hands, made them more cooperative, made them feel better, and it made a huge difference in amount of stress I had while caring for them.

I know myself, because I have cognitive limitations which vary at times, sometimes in past 2 years of intense recovery i've needed someone to just decide for me. I didn't realize and thought I was fine on my own but loved ones were very very stressed and worried about me. They took decisions out of my hands sort of and helped me a lot. I couldn't tell I needed it and also didn't realize what they were going through as i was so ill. So...see? It's possible your ex has little idea where he's at and how it's affecting all of you. The extent I mean.

Anyway, just in case it helps, I wanted to mention it. Sometimes you just have to say "No I need help to take care of you so we're doing this" or a variation on that.

Carlyn

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