kimmie
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I’m sorry to hear about the seemingly necessary negotiations with the home health care folks. But it is great to hear that you have a wonderful team with your surgeon and oncologist.
I love Lainy’s analogy – here’s praying you find the right key. If anyone can, I think it would be you.
Love from across the pond,
KimOh Pam, I am so sorry. I’ve been afraid to read this news, but knowing it was coming. I am glad it was peaceful and you were all with him.
Come to the boards when you need some support – this site continues to be such a help for me.
You and your family are in my prayers.
Love,
KimTo sunshinecargiver:
I so agree with you. This website was a godsend when my Mom was first diagnosed last May, and went on to become a lifeline for me. Most of us care givers have no medical training – I liked to call it “on the job training.” We do what we have to do, be an advocate for our loved one, read everything we possibly can about this disease and treatment. Along the way we absorb and learn and – thanks to this wonderful website – maybe do a little teaching, or at least share experiences.
Though my sister is an RN and has been a hospice nurse for 10 years, I have not a drop of medical training. But I accompanied my mother to every appointment, test, chemo day, scan, etc., and kept a binder full of notes. (I’m a little anal with that kind of stuff.) And with my sister reviewing every week’s bloodwork with me, I got to know what was what, and what good vs. bad numbers were. Mom used to tell anyone who would listen that I deserved an honorary medical degree!
Thanks everyone. It’s somehow comforting to hear from people that know just how I am feeling. I think it’s worth a trip to the bookstore at this point.
Michelle, I ask my Mom every night to visit me in my dreams! Luckily I’ve always had vivid dreams, so I’ve had a couple about her. Last night, we were packing for a weekend at the beach, just me, my sister and Mom. We were shoving everything into back packs so we wouldn’t have a lot of luggage. Then we boarded a train at a restaurant and off we went. That was all there was to the dream, nothing exciting. But it was like real life, something we would’ve done before CC entered our lives (except the train at the restaurant part!) and in my dream Mom was just her normal old self.
I love looking at pictures of her. I have a wonderful one on the window sill above my kitchen sink. It was taken about 10 years ago at Thanksgiving at my sister’s house. Dad’s sitting in a chair with my sister’s apron on, and Mom’s sitting on his lap laughing so hard – you can practically hear her laugh just looking at the picture! Humor and laughter has always been such a big element in our family. So this picture always makes me smile.
The home hospice organization that cared for Mom offers counseling during the first year for their loved ones. Today I have my first appointment. I’m curious to see how it goes. It certainly can’t hurt, and it might just help.
Oh Pam, as difficult as this time is, you all sound so at peace with everything. It sounds like you are doing exactly what you need to do – for yourselves and for your dear dad.
So glad that you found the magic combination of meds – it makes such a difference! I just wanted to mention – ask hospice about getting the meds in liquid form. The last few days that’s what we used for Mom, both pain meds and the stuff for congestion. When in liquid form the dosage is such a tiny amount, we just squirted it under her tongue and it absorbed that way.
Again, keep up what you’re doing and try to be strong for each other. You’re doing exactly the right things. Prayers and blessings coming your way.
Lainy, I’m praying for another hand to be dealt! I don’t really know the answer to your question. We were never really sure if/where my Mom’s CC metastasized or not. She did have almost constant back pain, but it was more lower back, and she did have pre-existing back and hip issues prior to her CC diagnosis.
Could hospice maybe provide another painkiller in addition to the morphine?
Praying extra hard for Teddy (and you).
What an amazing woman she is. Fabulous story, thank you for sharing it here!
It’s sad but still wonderful that something like cancer can change one’s outlook – not just the patient but those around them as well. Like my Mom, the day after they told her there was nothing left to be done and she booked the entire family on a nine-day cruise through New England and Canada. Eight days after we returned she died. I know the trip wasn’t easy for her, as she really did begin to go downhill while we were still vacationing, especially fatigue and confusion. But those are memories we will always treasure, including the grandchildren.
Wow. Wow is all I can say. How amazing that someone was able to put into words what I’ve been feeling, but have been completely unable to verbalize for myself or others. I’m sharing this with my sister, brother and Mom’s sister.
THANK YOU for sharing this here!
Wow Lainy, beautifully put. And you too, Mary.
I agree with everything you both said, though not as a spouse but from the perspective of being one of the daughters and caregivers of a CC patient who died on home hospice. (Though Mom was at my sister’s house, not her own house, but sis’s house was much better set up for a hospice situation.) We made so many memories that I know I will cherish forever, and I already revisit them in my mind only 5 weeks after she passed away. And even being there when she took her last breaths. It was sad, of course. But my Dad and all three grown kids were there, as well as Mom’s sister and brother-in-law. It truly was peaceful.
God’s blessing and peace to you and your husbands, and to everyone who reads this post and is dealing with CC in their lives.
Hi Margaret,
So many great suggestions here. Just wanted to add what my Mom tolerated when she was on the gem/cis combo. I will start by saying she was overweight before her diagnosis and was still big til the end. (She was actually quite upset that chemo didn’t make her more nauseas, as she was really hoping to lose some weight!) Boost shakes were something she always tolerated well. And soups and stews – they were comforting and warm in her belly. I LOVE to make soups, so I’d cook up big batches and freeze them in 1-cup portions. Soups are a great way to sneak in all sorts of goodies, including proteins, veggies, beans, even tofu. And toppings can add needed calories – shredded cheese, dollops of sour cream, diced avocado, etc. Wonder if you could add that protein powder to soups?
I am so very sorry to hear this news. Having just lost my 64 year old mother to this awful disease 33 days ago, I know the end is difficult. As you said, the one consolation is that the pain is over for them. But our pain is not.
I am praying for peace for you, and for the happy memories to begin to replace those of his last days.
Pam, many thoughts and prayers coming your way.
Know that your Dad can hear you – talk to him. That’s what the hospice nurses told us, including my hospice nurse sister, but I didn’t used to believe it. When my Mom was in the state your Dad’s in, we spoke to her a lot. Mostly encouraging words that we would be ok, and she could let go and not to worry about us. They’re in that “transition phase” with one foot here and one foot in the next. When an old family friend, who’s a priest, came to bless her for what would be the last time, he said, “Bonita, I’m going to give you the Annointing of the Sick.” And my Mom, who hadn’t said anything coherent in days, said, “I really appreciate that.” She heard.
Frances – so many parallels between your experience and ours. My Mom had a CC recurrance in late June. Two rounds of chemo did nothing, so they stopped and we opted for quality over quantity. She also had nausea, reflux and back pain. From becoming so fatigued she had a fall at home, badly spraining her ankle. That’s when she moved in with my sister and was put on home hospice. Sounds similar to your Silver Chain – they came in once a week to check her vitals, update meds, etc. They were wonderful at providing medication for whatever she needed, especially pain and nausea. They set us up with a hospital bed (I called it the Transformer Bed because you could adjust it a million ways), bedside commode, oxygen, hospital table, everything we might need. Home hospice also sent out a home health aide two times a week to bathe Mom, wash and dry her hair, etc. This angel even painted Mom’s nails! We also got weekly visits from the chaplain and a social worker came a few times.
Are you the sole caregiver or do you have other family members to help you? My sister and I shared in Mom’s caregiving for the 6 weeks she was on hospice, and it was very draining, both physically and emotionally. HOWEVER, we wouldn’t change anything we did – if we had to do it over again we’d have her on home hospice and do everything we did. So many precious moments during that time, memories that I’ll always have. And, although it wasn’t her own house, she was at my sister’s surrounded by family and grandchildren. That was what she wanted.
This website is a wonderful resource – keep coming, reading and posting.
Pam and Amy, thank you! Sometimes I wonder if I’m crazy having some of these feelings, but you validated them for me. I know it will take time to lessen the pain. And I’m done being angry at my friends. They just have no idea what I’m going through. I’m also done putting up a good front. I’ve always been a Type A, get-it-done kind of person, and hated to show my feelings or be too emotional – that was always my mother and sister’s department. When people ask how I am, I just say “OK.” I think I’ll be more honest with my friends that I am NOT ok.
Pam, I’m pretty sure they use Wellbutrin to help people quit smoking too? Maybe I’ll request to go on that and kill two birds with one stone – curb my anxiety and kick the habit! My mother always asked my brother and I both to quit smoking. The last time she asked was not long after her “terminal” diagnosis. I told her it was much too stressful of a time to quit, but that we would once the craziness was over. I made my brother shake on it that we would – now that cancer has hit so close to home, why increase our risk even more?
My husband and my son just left for a weekend of camping with the Cub Scout pack. My daughter and I are going shopping and out to dinner tonight. I had this split-second desire to call and invite my mother to come with us. I still forget she’s gone sometimes. I guess once those “give Mom a quick call” urges subside, I’ll know I’ve turned the corner.
