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Reply by NatR

14 Mar 2012, 2:31 AM

Hello - glad to know that sharing burdens lifts the load a bit. My heart goes out to you as you help your dad with tying up loose ends, take care of medical appts and his pain etc. Interesting story about the connection to Castle Loma! I hear you about your dad deteriorating.

But you are there, you Are helping, you Are making a difference. We have more in common than you think. my mom whom I haven't seen in two years because of distance and finances - and who suffers with dementia - just had her 5th fall in the last 14 months or so! She has stitches in a cut on the back of her head, a sprained wrist, needing oxygen, not eating, drinking. My trip booked for the end of april to be with her on her 87th birthday - may have to bd bumped up.

I was also reminded tonite that we as family try so hard to fix, keep comfortable, make sure they get checked and treated - in a lot of ways we do this thinking we are doing them a favour - when it's not at all a favour!

End of life is harder on close family members. I remember other trips when mom was well- how we enjoyed dinner, drives, ice-cream, a laugh and on and on

Now, we are in the position of having to let go while doing everything humanly possible to avoid guilt " did we do enough - did we do it right"

I am sorry that in responding to you this has become partly my story too
I am waiting for a call about my mom - Hoping that I csn see her one last time, hoping I can help, hopping she will somehow get comfort and know I was there.

I think that your comments fit right in with what is happening with me - i admire your strength to share it. Also the ability to recognize that you are doing all you can for your dad

Thank you for letting us know what's going on. vit helps me to hear your story too. We are the product of our parents abc our upbringing - we are trying our best to be a rock, to show that live and support.

Keep sharing as you can. Will be thinking of you as you go through this valley with your dad. I am glad you are with your dad - the good things you shared, the memories you are making.

I just wish my mom could have survived moving to Ontario - but she couldn't cope - when I coaxed her into coming here several years ago. I knew this day was coming - didn't want her to be alone - but it is coming to pass. We have to learn that some things are out of our control. We are on a journey that doesn't always take the fork in the road we would have liked. Sorry this is so long and sorry if there are errors, phones are hard to type on;)
Sincerely, Nat

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Reply by charliebrown63

18 Mar 2012, 2:24 AM

Hey Nat:

Thanks for the response. Well I am doing what I can for my dad - giving it my all and then some - have give up my life - once again for him - and would I do it - well I said the last time I would not and yet here I am. The only thing is that I wont get another chance - this is it - so I have to give it my all and then some. Sorry to say, but it is what it is. You know I keep thinking this is a dream. Some days go by and he is not too bad and I forgot we are in this mess and then there are days and they are getting more and more frequent - but it catches me off guard when I see him sitting in his chair falling asleep or not eating very much at any given time, or trying to walk across the floor to go to the washroom. It brings to me to the horrible reality that he will not be around long - and then the guilt strikes about just an hour or so before I was thinking on how hard this is on me - poor me -

I will survive this mess - unfortunately, he will not - So I swallow my self pity and go forward - as hard as it is sometimes. As for being at a distance, well I am fortnate enough to be able to take the time off work to be here - my sister is in saskatchewan and is not an active member in all of this. I damn it have tried over and over to open the door for them to be closer,but I give up - Two years ago I arranged to have her come and stay with us for a week - it was the first time that he had saw her in 19 years - how sad is that - and the only communicatiion between them during that time was the odd telephone call - HOW SAD IS THAT and the other part of this is - she goes home two years ago - with the communication open again, and they both ball it up and dont communicate until this christmas gone by - and that was only because I called her and told her that he was sick - So this time, her and her husband and her boys 24 and 21 came home for 10 days - These are grandchildren that dad had not seen for over 20 years - THAT IS VERY VERY SAD, but you know they are all big people - they are both equally responsible for the lack of communication, despite the fact that I tried to fix them soooo many times. I have given up - it is now up to them. When I took my sister back to the airport at the end of February, I told her - you have to keep this door open now - he needs you - she started to cry - when asked why she was crying, she replied that she felt guilty. I told her that the only reason she has to feel guilty is that she has let this time go by and not been in touch with him, but again, he was just as guilty - he has always had her number and she has always had his - but the important thing now is thta she stay in contact with him now. Does she - not as often as I would like, but like I said, I give up I cant fix them. I will be able to lay my head down at the end of this and know I did the right thing, and if she can do the same then so be it. I told her that I do not expect her to give up her life in saskatchewan - that would be insane, but I do expect her to stay in contact. She can only do what is in her control - it is what it is.

Anyhow, all of that to say that you have to do what you have to do - and if you can lay your head down at the end of the night and know you did everything that you can for your mother, that is what matters. You are doing all you can do at a distance. I know first hand what dementia can do to a person and my heart goes out to both you and your mother. It, like cancer, is a horrible disease that robs the ones we love, their spirit, their will and it is like they become someone we dont even know any longer. It is not fair = I have decided that when the good lord decides to take me - I want to go in a car accident or a heart attack - I do not want to linger and waste away to nothing - Life is too cruel and unfortunately no one knows what they have in store for them.

Anyhow, more help is on the way to give me some sense of sanity - hospice are going to get involved, as he is getting worse - I see it - little things - like mobility - and the not eating thing - he started the pain medication this week - so I know it is only a matter of time - I just hope that I am ready for this - Like I said before, I have been through this too many times before,but this time, it is my dad - God Help me!

Anyhow, take care and know that you are doing everything you can. I trust that all is ok with your mom - as ok as ok can be! Thanks again for the listening ear???? Look forward to hearing from you.

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Reply by NatR

19 Mar 2012, 12:45 AM

Hello Again,
Thanks for the update. You are right - it is difficult to complain when others are facing end of life and serious pain and loss of quality of life.

I am glad to hear you are holding up. You are an exceptional person.
I send you my best wishes as you deal with this day by day - with as much courage as you can muster.

About your Dad and your sister not speaking...strained communications - you tried to mend it, but you cant. Its up to the two parties to mend that.

I dont think I can offer much advice there as I tend to have problems communicating too. As much as it is easy to answer someone you dont know...its also hard to deal with things in my own personal life. I certainly wish I could do it better, talking, sharing feelings, getting things out without rupturing family connections.

Why is it so hard? Dont have the answer. But I am glad to hear from you and hope that each day you get through is a day you can be proud of. You are doing something exceptional.

I do know that when my mom was aware and in communication with me, I did talk to her daily, and knew when she began to go downhill. I also visited her the last couple times knowing that soon she wouldnt be aware. I still care despite not being in touch with her now...I often think of the calls - she used to give me her advice, whether I needed it or not...and I probably did! She made me laugh, she cared and I tried to let her know I cared too.

I know how hard this is for you to go through with it being your dad. I know that you will have no regrets - and you will have many memories of talks, time spent together - and that you offered everything you could.

I send you my best wishes...and hope that you will stay in touch if you are having a bad day...we all have them...lets just not have them on the same day:)
PS..on my mom, travel plans havent changed..no serious news the past couple of days...hoping that she is doing a bit better.

Take care,Nat

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Reply by Cath1

21 Mar 2012, 6:55 PM

Hi Natrice:

My heart is with you. I'm sorry your Mom is not doing the best and that you have to carry this worry with you from afar. The thing about family is that no matter how far away they are from us, they are always right inside our hearts.

Resist all temptation to let guilt enter into your soul because it just zaps you of strength and you need it now. You know in your heart that it is not yours to own. I don't know why we fall into the trap guilt sets for us, I guess it's because we like to think we have some control when often we have none. I know this from experience. Ironically, it's the things that we do well that we have more trouble accepting. You do so much well and have demonstrated over your lifetime your giving nature, your love and loyalty to your mother and family and community - in real life and virtually!:-)

When you think of your Mom think of her being a mother like you are to your children and then you will know for certain she would never want you to suffer from regret. We as mothers and grandmothers always want the best for our kids and grandkids. Your Mom loves you even though she is not in a position any more to express it directly to you in the way you may need, and I know the loss you are grieving even though your Mom is still with you.

When my Mom was in the nursing home one of the residents ridiculed her openly one day and said to me, "She has no idea you are her daughter." My Mom could not at that time communicate well or clearly her thoughts and feelings, but when she heard this lady say that she looked at me and rolled her eyes and then we both smiled and hugged. My mother always knew me by heart. I believe your Mom knows you by heart and loves you as she always did. You are her little girl, her big-hearted daughter, the strong one who care of others despite how your own heart is breaking, and quite truly, that is spectacular! Take a bow, Natrice and know you have many people who care about you and are wishing you all the best. You, like we all here in this community, are never alone.

With you in empathy and in spirit though I may be miles away you are always in my heart!:)

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Reply by NatR

21 Mar 2012, 7:14 PM

Ty very much, that means a lot. I will re-read this and remind myself not to be so hard on myself. I think caregivers do that to the extreme.

I will see my mom in 4 wks approx. It may be my last visit with her, but you are right, I re-live her phone calls, her voice saying How are you honey! and her advice which I didnt always follow - but probably should have;)

She meant well:)

The older we get, the more we understand where our parents stood on things, because now we are doing the same..

Thank you again VHCath for your thoughtfuness
Natrice

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Reply by moderator | modératrice

12 Apr 2012, 11:37 PM

Hi all,

Today, a new member posted about her mother who has advanced peritoneal carcinoma. I was hoping that you could reply to her message and lend an ear.

Bowel Obstruction in Peritoneal Carcinoma

Thank you.

Colleen

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