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Caregivers and patients

Chris_W
Posts: 28
Joined: Apr 2011

Hello all

It's interesting to read the posts on here. I'm not surprised that 90% of them are from caregivers. I'm one of the patients and I can see my mother's frustration in a lot of your stories. I can also see myself in how you describe your loved ones. I had my resection in 2008, they only managed to remove 80 percent of it. I did chemo (temodar) a few times, and the last time I developed an allergy to it. Now the only medical option for me is radiation. I learned a few months ago that the tumor has started to grow again - this means I am now a Stage III.

I can see the pain, frustration and feelings of despair in my mother's face. As the patient, I hate that she has to go through this - I feel guilty and mad at the world for making her the only one who can help me. She should be enjoying her retirement and not taking care of me, a 41 year old.

Two years ago I got a dog, Gracie. She has been more important to me at times than myself. My quality of life has gone down to a level that I have accepted the idea of leaving this Earth for a better place. I hang on at times because I know my dog and my mother would be heartbroken if something happened to me. Life consists basically of medical appointments, taking countless pills, and trying to get through a day with a positive attitude. It is so hard to not be envious of healthy people... the battle goes on beyond the actual disease. Being single, I can't imagine anyone wanting me at this point.

I feel the extremes, incredibly blessed at times, and incredibly unlucky at other times. I have friends I can open up with, and the sort of things I talk about are the exact things my mother, as my caregiver, doesn't want to hear. I want to give up, I'm ready. The pain has become too much and I can't deal knowing that this thing is taking me slowly. I'm existing, not living. I can't work, I sleep twice a day, I can't drive anymore, my vision is going blurry, and I see my friends and other people my age having great lives and making plans for the future.

Yet what helps me through this? My dog - the only love in my life who has no clue I am sick and slowly dying. She is 3 now, and my secret wish is to live as long as she does. I am just praying that the end won't be painful for either of us when that day comes.

Quality of life is the most important thing in life... A caged bird isn't happy if it cannot fly, that is how I feel. Only my dog can help me forget, until when I am out on a walk and a neighbor asks "Chris, how are you feeling?". I know the question comes from a good place, but it only just reminds me again and my walk with Gracie is ruined...

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Chris,

Thank you so much for writing your post and sharing about your situation and especially about your dog, Gracie. I hope I can tell you how much it means to me.

Your situation sounds similar to what my son is going through. He too has me--his mom--as his caregiver. He too has struggled with being single and feeling like no one would want him since he has brain cancer. He too is sitting on the sidelines while his friends are graduating college, going to Europe, getting married, having children. His name is David and he is 28 years old. I read your post to my daughter. She thought I was reading something her brother (my son) had written.

Right now I am in the hospital with my son who is doing an experimental chemo treatment called the blood brain barrier disrupter. He is having a very rough time and right now I am especially concerned because he is unable to speak. He understands us and can nod yes or shake his head no, but he cannot talk. We don't know why. This is a new development.

Please forgive my choppy writing style. I am extremely tired and upset and not thinking clearly. The thing about your post that really struck me is your comments about Gracie. I had to get really ugly and make threats and be a pushy witch (with a b) to get our NO's nurse to write a letter for my son to be allowed to have a dog at his apartment building. The nurse did not want him to have a dog because she said someone with a compromised immune system from chemo should not have a dog and she refused to write the letter. I ended up being nasty enough to get the letter, and we got a puppy but it was a huge, ugly battle and it took a lot out of me. I feel the same way you feel...it's all about quality. These doctors say that all the time. But when I want to give my son a pinch of "quality" by adding a dog, they said no, no, no. I said that my son is exposed to coughing, germy, nasty people at church, at the store, at Starbucks, in the doctor's waiting room...should he be a recluse? Some things--like a dog--are worth the risk because they add so much quality to your life.

So now while I'm here in the hospital, the day nurse told me my son should not have a dog, one of the neuro-oncologists told me that my son could get organisms from a dog that could make him sick...they are all making me feel so rotten and guilty about my son's puppy. My son is so happy with his puppy. He said that he's not lonely now that he has Jackson. He's even smiling a little again. The way you write about Gracie is exactly how my son feels about his little guy. It confirms to me that I did the right thing in getting a dog for David. You made me feel like it was the right thing to do and you removed the guilt I was feeling. You helped restore the joy I felt when we put that puppy in David's arms. Thank you, Chris.

After I read your note, the night nurse came in and talked to me about the dog issue. She said that the NOs come at it from a different point of view. She worked in palliative care and she feels strongly that having a dog is a huge benefit, and that the benefits far outweigh any risks. So I had a double confirmation about the puppy---one from you and one from the nurse.

Thank you again, Chris. I really am so very grateful. I hope you and Gracie enjoy many sweet walks and great times together. Please visit my expressions section so you can see the pictures of David's puppy...and also the pictures of my sweetheart Pahli--my Belgian Tervuren and my faithful life companion.

Love and blessings to you,
Cindy in Salem, OR

Chris_W
Posts: 28
Joined: Apr 2011

Thanks for your answer Cindy :)

I did read your post about getting David the puppy, but I was hesitant to reply. Everything you wrote and your tone reminded me so much of my mother and her frustration, that I just couldn't, sounds strange, but it broke my heart. If you didn't get any replies, I certainly would have written and said the same things everyone said "go for it, and forget about what anyone thinks". It's HIS life, let him live it. The one thing I didn't like what you said is that he's dying, it was too real for me. I think those things, and I may write them down, but I never say it. Weird I guess.

You are 100% right about germs - waiting rooms and any public space are a 1000 times dirtier than anything a puppy can produce! I avoid so many public places, the last thing I worry about is my dog! I avoid kids though, haha.

Love and blessings back to you
Chris (in Montreal, Canada)

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Chris, please forgive me for causing you pain by repeating what I yelled at the nurse about my son dying. I never say that.....I never use the word "terminal" either. I shocked myself when I said that to the nurse, and swore too. Like I said, I just snapped.

I don't believe my son is dying--but I am scared about the road he is on. I said that to that nurse because she herself has said it to me about my son several times. I was saying it back at her in an accusatory, "you yourself say he's dying" way. Kind of sarcastic, for lack of a better way to describe it--and with a lot of emotion. She doesn't say it point-blank but she says things like "you understand that there is no cure for your son," "you know that your son is going to die from this"--those kinds of statements. I like her okay, apart from dealing with my son's condition. But when we are talking about David, I have to put up tough walls or she says things that really upset me. She's been working alongside our oncologist for I think over 30 years and I believe she has gotten jaded and hardened up somewhat. She is being a lot more careful around me these days, though. She is very well respected by the hospital nurses and the other staff. She's much more than a nurse...she's our oncologist's right hand man.

Anyway, I hate to think that my choice of words hurt or bothered you. I hope that you understand why I said it. I am kicking myself for my lack of sensitivity.

By the way, I agree....kids are germy little buggers! It's hard for David to avoid them since he has three little nieces and one little nephew, and they all adore him, and he loves them too. We spend a lot of time with family. It's all about quality, right? :)

Peace, blessings, and love to you,
Cindy in Salem, OR

Chris_W
Posts: 28
Joined: Apr 2011

Hi Cindy

Oh please don't apologise for that. You didn't offend me at all :-) You said what we are all thinking, it's that elephant in the room. But as I tell everyone, when it's our time to go, we will. It could happen tomorrow and sadly, too many young people pass away every minute from accidents, starvation, etc.

I understand your frustration and anger all too well. When you talk about it, I feel like you are describing my hospital - jaded. This nurse of yours should retire, it's irresponsible to say things like that to you. I have seen my mother lose it many times, she feels that they don't care once the operation and rehab is over and done. A chemo patient isn't as interesting as one still in ICU. Only last week I had to wrap my arm around my mother and tell her "it's ok Mum, it doesn't bother me at all, I'm not stressed about it, you shouldn't be either." She was in tears when I said that.

I keep saying that I think things are toughest on the loving caregivers. How painful is it to watch a loved one suffer? I know first hand, my mother is a cancer survivor, 22 years cancer-free now, but as a 19 year old, I was in constant pain being helpless to help her in her moments of pain. I remember feeling such joy at being able to do something as simple as change her sheets. Now that the role is reversed, I am happy that it's me going through this and not her. She said once that she wished it was her instead of me, and I just told her that I wouldn't have it any other way, I wouldn't want her knowing what this is like to live. There are many things I don't tell her (hence me being on this forum).

You're a wonderful mother, protective just like my Mum. Please remember to take care of yourself too and treat yourself to that extra piece of cake, or trip... you deserve it. One of my doctors said to me the other day that my life needs to be as balanced as possible, he's right, but that applies to caregivers too. If you're happy, so are we :-)

Love back and much positivity back
Chris

connsteele
Posts: 232
Joined: May 2011

Thank you so much for you post.And your candor in how you are feeling re: being cared for by your mom. My husband and I, both retired only three years, are also the caregivers for our 34 year old son (single, age 34, dx inoperable AA3 on 4-13-11). He was living in the Washington DC area, working for the government, when he had a seizure and we drove straight through the night, from western Ohio, a 9 hour drive through fog and rain, to get to his apartment, where he lived alone. We stayed with him through the surgical biopsy, radiation and first round of Temodar, which lasted over 3 months.
Since then, he never has regained his full funtionality. Uses a walker, has vision problems, fine motor deficits, and some loss of mental status. Plus, he's a type 1 diabetic.
We finally got to the point when we had to say, "you can't live alone and we can't live here. You have to move home with us." That loss of independence was perhaps the hardest thing for him to accept and the hardest thing for us to do. For so long, I felt that we ripped him away from the life he had created in DC. However, he did say the other day that he thinks he is where he needs to be right now, with his family. That was a real gift to me and my husband.

Like you, I too envy those who have what you call a "normal life." I envy those retired couples in their RVs, seeing the country, seemingly carefree. But then what is "normal?" Certainly not what you see in a Normal Rockwell painting. But you know, considering our son's situation, I wouldn't want to be anywhere else. This is our life's highest calling right now, to care for him. I wouldn't want it any other way than how we are doing this now. We feel that this time with him is a special gift.

I can empathize with your mom, but I'm sure that she feels the same. Of course, we wish things were different, but we are here for each other, and we wouldn't want it any other way.

Good luck to you. And give a hug to your mom for me.

Chris_W
Posts: 28
Joined: Apr 2011

Thank you for being honest and saying that retirement is not how you saw it. I know you'd never give up on your son, I guess it's just hard for me to see my mother (I don't have a father) not taking advantage of her retirement. She is a cancer survivor, 22 years cancer free, and then she finally gets to have absolute freedom in her life (much deserved!) and she is stuck with me. It breaks my heart, and I try to not feel guilty.

Does your son ever get angry or frustrated with you? I find myself getting that way sometimes, maybe it's the frustration of all these pills I take, or the fact that I lost a whole load of dreams I had (I was a lawyer in my "before" life) and now have no money. I try not to feel sorry for myself, and I hate myself when I take things out on my mother. I hope he doesn't do that to you. Don't get me wrong, I adore my mother, she is an angel, but I see the concern and worry in her eyes, the way she gets mad at the medical system, knowing she isn't sleeping, knowing she is crying when I am not in the room... It is all unfair, and I can't help but feel guilty and wish there was another way.

We are so lucky to have great people like you and my mother in this world. I wouldn't be here if it wasn't for my mother, she saved my life in more ways than one. I live for her and for my dog. Without them, I would simply give up. They help me be positive and see the good things that are still accessible in life.

Please try to enjoy your retirement as much as you can - take little trips, seeing you enjoying your life will take away some of the guilt he might be feeling. Seeing my mother happy makes me happy :)

Hugs back
Chris

connsteele
Posts: 232
Joined: May 2011

To answer your question: yes, there are times when he gets frustrated and short with us, but we know that it's just the disease and situation talking. Afterall, even in good times, people who live with each other get testy and irritable at times. Do you or your mom take part in a support group? While we don't attend one now, after the holidays are over, and the dreariness and humdrum of winter sets in, I plan on going to one. Maybe even a counselor. It really helps to talk with others going through the same thing.

There have been times when our son David got really frustrated, mainly because he can't do the things he use to do. It helps when later he comes back and says he's sorry. That is special to me.

Again, all the best to you. And don't give up.

Chris_W
Posts: 28
Joined: Apr 2011

I'm glad to hear it isn't just me that gets like that. I am also happy to see that you are understanding.

It's bad, I got counselling as part of my post-op rehab, but my mother got nothing except an invitation to see a social worker. My therapist helped a lot, I voiced my concerns about my short fuse and also how my mother "hovers" and I worry about that look of worry in her face. My therapist said the best thing (also the most obvious) - why not tell her? Haha, who knew I could ask my own mother what she was concerned about? I also felt empowered to ask her not to hover.

Thank you for reminding me to apologise more often. Sometimes I figure that my mother just understands and that's that. We do talk a lot, but she is stronger than me, but you are so right, I need to voice my appreciation more and help her feel good.

I would recommend a counsellor if finances permit. Our hospital has a brain tumour support group, but it's only once a week for an hour. And we live an hour from it, and my mother can't drive at night anymore.

Hugs from Quebec

Chris

websterbr's picture
websterbr
Posts: 20
Joined: Oct 2011

Hi Chris,

I can completely relate to you and your dog but I believe that dogs do know when we are not well. My lab Walker is 2 years old and knew right from the beginning when I started having severe migraines. He was always more of my husband's dog. He followed him everywhere and listened to him more and I and used to just sit and bark at me constantly. When I got sick he didn't leave me side and he didn't bark at me to play like he usually would. My migraines got so bad that I had to be in my bedroom with every little bit of light covered. The windows were boarded and a towel under the door to keep the light out. Walker layed outside the door the entire week I was in there. When my husband came in the room to give me more medicaiton when he got home from work Walker would run in and lick my face. When we found out that it was a tumor everything around the house was quiet and stressed. Walker would bring his toys and drop them on our laps and let out a little grunt and when we ignored him he would pick it up and drop it on your lap again which of course made us laugh. We have a few conservation areas near our house and we found it relaxing to walk him there when we were upset. He didn't let me out of his sight which was unusual because he is a natural hunter and usually puts his nose down and goes. I had my tumor removed in September and I am still home from work. The few days after my surgery I was vomitting a lot. When no one was around and I started vomitting Walker would sit and bark until someone came upstairs to the bathroom. Walker sleeps beside me every night when my husband is at work and follows me everywhere around the house. He is more patient with me now and even climbs up on my lap when I am sitting in the rocking chair and lays his head across my neck. Dogs have an amazing way of helping to heal us. I really started to believe in the power of dogs when my in-law's lab started doing the same things that Walker was doing. He was my husband's childhood dog and would get very upset if he could not get to my husband even if it was just the other side of a door. This dog didn't leave me side either! He would cuddle up on my lap and lay his head across my neck as if hugging me. My father says that some dogs can detect cancer by the smell of our breath.....Who knows. I just know that these dogs did a complete 180 with me and it really helped.

Since all of this tumor stuff started I began to notice the little things. Now instead of saying "no it is pouring outside we will go for a walk tomorrow". I put on my rubber boots and splash in the puddles with Walker. He jumps and barks and bites at the leash with a big goofy look on his face. He cries with me and laughs with me. We take care of each other when we are sick. It is a buzz kill when people stops us and ask how I am doing. I got sick of explaining the details and the pitty looks I was getting so I would just say "I am having a good day today so I have go take advantage of it". Don't under estimate Gracie. She probably knows more than you think.

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