Dearest Internet

Dearest Internet,

As my readers already know the health of much of my family is not so good. Both my mother and my father were diagnosed with different terminal forms of cancer last spring. While there is treatment to extend their lives, there is no cure for what they have and most likely, neither parent will be around for more than another couple of years. But you never know. And that really sucks too. My mother has peritoneal mesothelioma and my father has had a reoccurrence of prostate cancer that he had originally battled about 11 years ago. Except the first time Dad had prostate cancer they had caught it early and this time the cancer zipped right into his bones. So now he is stuck with the cancer. It can't be removed from his bones.

In the mean time, in January 2007, feeling like my grandmother was not getting the care she, then nearly 95 years of age, required living all alone in her studio apartment with 20ish year old aides to come and not really actually care for her but mostly sit in her teeny tiny apartment and just watch T.V. or talk on their cell phones, I moved grandma out to an assisted living facility near me. I decided that if grandma's kids (my mother and uncle) weren't going to give her what she needed to be taken care of then I would. And I could, so I did. And it was great for a while. We saw grandma all the time, she had dinner with family, and made friends at the assisted living. She really seemed happy for the first time in years. But then around the time grandma saw 96 creeping up on her, life got tough. Since last November grandma has been physically and mentally declining. There is nothing shocking or profound going on, just a slow decline that is not a surprise for her age. But still, the grandma I grew up with and adored isn't really with us anymore. And the grandma that I visit nearly every day is lost and upset. She knows she can not remember anything and tells me every time I visit that "something is not right" and when I question her about it she tells me that she can not remember a thing. And it is true. She isn't even sure what her own name is anymore. And I don't know how that feels to have an empty memory, but I imagine it is disquieting to say the least. Also, she has suffered with the prolapsed rectum, the bone infection and eventual amputation of her toe, and now she is still in a wheelchair. She is weak. I am not sure she is ever going to really walk around again.

So what I am asking of you Dear Internet, is some advice. I am hoping that you, and the people you know, and maybe your friends, co-workers or relatives have some experience dealing with a situation like mine. Or maybe you have cancer or had cancer and can tell me what the people around you did right and wrong. Lot's of people live and die from cancer. And lots of people die of old age. I know I am not original here.

Except this my first time around with three ends looming in the not so distant future. At the end, when it's all over and my family is gone, I just want to be able to say I have no regrets. I want to do the right thing. I want to say the right thing, and I want to be the best daughter/granddaughter during this unpleasant journey that I can be. So please, Internet, send me your stories. Tell me I am not alone and that you know what I am going through. But most of all tell me what you did. Because I do not know what to do. You can leave me a comment for everyone to read or you can email me. I just want to hear about your experience, what you did right, mistakes you might regret, any thoughts you have. Anything you have to offer will be helpful and appreciated. Really.

Thanks in advance.
Clickmom

Comments

[danelle]

Well I can't tell yo how I did it because I haven't. I can say, however, that I could only hope to handle it with an ounce of the kindness and grace that you have. These people are so lucky to have you in their lives, and with the exception of grandma, they don't even realize it.

[Jenny]

We shouldn't have to do these things at all, but we do. Its what makes us human. The best I can offer you is that you learn from it, and then when someone else you know goes through it, you can be there for them, and offer them grace.

[Sandy (Momisodes)]

What a heavy weight you are carrying. I am so sorry. My grandmother is also around 95 years old, and her health is declining. However, she lives with my mom so that helps with the memory loss, and disorientation. It kills me that I cannot see her everyday (they live in another state), as she was the woman who ultimately raised me while my parents worked all the time. What I wish I could do now is have my daughter see her as much as possible. See her, hear her voice, and have her arms hold her. Those are the things that we remember and never regret. I wish I had more words of advice. Please know that you and your family are in my thoughts. *hugs*.

[jenn]

damn. this sucks. really.
i wish you didn't have to go through this. at all.
i'm not sure if i have any good advice or not, but i'll share with you some of my thoughts.
i have been through a LOT of sickness and death in my famiy and friends... it is the worst and honestly there is no right or wrong thing to do... it is what you feel is right, in your heart, what makes you feel happy and your family memeber too. do what works the best for you and your children and your family. no one can judge you and no one can tell you what you need to do.
spend lots of time with them, if you can. if you can't,if it just kills you then do what you have to do... my husband could NOT go see his grandfather when they thought he was going to die, he just could NOT do it... so that is okay. everyone else thought he should and that he had to do it... and all that... laid on a guilt trip like you could NOT believe, but whatever that was his choice, what he had to do and what he could handle and not handle. he didn't not go b/c he didn't love him... he didn't go b/c he loved him too much. make sense??
smile and remember all the good things and times, and share those stories.
Tell them all how much you love them! No matter how many times you have said it, say it again and often.
Take pictures and write memories down. Make new happy memories. and know that no matter what you do or what any one tells you it does suck. you will feel hurt, sad, angry and alone some days, and some days you will feel okay and happy and remember them and smile... that is okay too. :)
and remember always that you aren't alone, that you have friends and blog friends to turn to, don't keep any of it in... you can't. it is too much to handle.
and also people will say stupid things to you... please forgive them, they usually mean well and just don't know what to say to you about all this.
lots of love, and i hope this helps some what ~ jenn

[Christine]

I'm still reeling from the recent diagnosis of Stage IV lung cancer in my dad. I feel your pain, and I cannot imagine what I am going through times three. I know that the support of my friends and church have been an enormous help and comfort. When people offer to help, I let them. And I am trying to remember to take care of myself, too. I recommend you do the same. Hang in there, and my prayers are with you....

[Melissa]

Just came here through NaBloPoMo's blogroll. (Hi!)

I was going to say most of what Jenn said. Spend as much time with them as you can (if you're comfortable with that.) You'll never regret spending too *much* time with them. Tell them you love them. Show them you love them. Just be with them. Hang out. Hug them, hold them, touch them. If they're not touchy-feely type people then try to get them in the habit of at least a hug hello and/or goodbye. You'd be surprised how many people will respond and just never did it because they didn't know how to initiate it. With my Dad (who is still alive) I made a joke out of it "Here it comes! I'm going to hug you now!" ;)

The best thing you can be is someone who loves them and surrounds them with kindness, patience, and warmth, without their feeling like you're talking down to them or pitying them. Sympathizing, sure. That's different than feeling sorry for them.

Also talk to them about what's happening if they want to. Ask questions. When friends of mine are in chemo I am very direct. I ask them about it just as I might ask someone questions about a broken leg. "How's the prostate? Can you pee on your own yet? Is it still leaking? That must be annoying." -I know it sounds funny. But they're just body parts and medical procedures. They think and talk about them with doctors. Why not with family or friends? (Well, usually because nobody asks or because they're embarrassed!) But you'd ask if it was a broken arm or finger wouldn't you? Ask them any questions you want. Start small and see how they respond. If they're comfortable talking about their treatment or its effects, ask more.

For yourself, I haven't read your blog enough to know if you're in any support groups but if your'e not, find one. Online or in person. Other people going through what you are. I think that might help too.

I wish you as much peace as possible at a time like this.