overwhelmed…….living a nightmare

Dear Roni,

You are in such a difficult situation. One parent is tough enough, but two is just an impossible roller coaster. I know you have a terrific supportive family which will get you through this.

Keep your happy disposition I see on facebook and know it will all work out, whether we like the results or not. Hospice did not help my Mom much, in fact, they left when she was dying and I had to call them back. But, I hope that was an isolated incidence. People say they are so helpful, just keep vigilant.

You are very special, take care of yourself!

Hi Roni,

I can’t really add anything to what has already been said to you, but I just wanted to let you know that I am thinking of you and am sorry that you are having to go through this. I know what it is like to be a carer to parents and it is not easy at all. I was my dads carer during his fight with CC and at the same time I was my mums carer and still am. Please keep coming back here as we are all here for you and no, you are NOT blabbering at all.

Thinking of you.

Gavin

Dear ronidinkes, I cannot add much more to Wendy’s beautiful letter to you.
Knowing what is to come perhaps you are experiencing your pre-grieving which is very normal, not to mention what you have been through being the Care Giver. I do believe it would be a good idea to have the Doctor call Hospice in at this time. They will be a big help to your parents as well as give you some physical and emotionall relief. It is beyond me how you have managed this far. Sending some big hugs to you and some strength as well.

Dear Roni – I am so sorry that you are going through all of this. My prayer for you is that you find some peace in honoring each parent the best you can. Be nice to yourself. Take some time to care for you. M heart is with you. Blessings, Susan

Hi Ronidinkes,

I’m so sorry you are caught in the middle of parents who are suffering from different horrible, life-threatening conditions, I’m not surprised you don’t know where to run. Illness and fear and despair can sometimes brings out the worst in people (they are clearly feeling comfortable enough to voice their opinions about one another in front of you), and perhaps when you are not there with your parents, they do manage to find some middle ground and some enjoyment or even comfort in one another which is the bit you mind not see when you leave (After all, they have clearly elected to stay together in spite of “hating” one another haven’t they?).

It sounds like your mum is finally taking control of her cholangiocarcinoma – the one thing i have noticed with my own mum is that she loses a lot of ‘herself’ when she is being dictated to by us (who care and want the best for her), the doctors or by the disease itself which sometimes makes her feel worse or weaker without warning. I guess you have to respect your mum’s wishes to finally take back some control, and admire her for actually being so strong and deciding enough is enough. My mum also refused chemo and radiation for the same reasons and defied a 6-9 month prognosis by keeping up her mental fight for the last 2 years, so medical treatment doesn’t count for everything!

If it were me in your shoes, I think its time that I would want to begin to be the child in all this again, and I think you are right to refer them to the medics and hospices, as after all they are geared up to properly counsell and nurse your mum and help her through this and manage her condition and her end of life.

I think we have to let our parents (continue) to make their own decisions even though they are weak and vulnerable and we feel we want to wrap them up in cotton wool. (For example, I would hate it if someone decided what i should do with my life). But I’m sure they really value you helping to guide them too, supporting them, loving them and respecting them and above all, enjoying all the good things about them that make you love them and want to care for them. At the end of the day, they are your mum and dad and not the other way around.

Please don’t cry anymore Ronidinkes. My heart goes out to you for what you are going through and the difficulty and fear you are facing because you are scared of the consequences of your parents making the wrong decisions. They have a whole lifetime of experience under their belts, so I’m sure their choices are very wise.

Take care, and please take some time for yourself too. To me, you sound like an amazing, caring and such a thoughtful daughter who just wants the best for her parents.

Wendy