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Reply by Tian

04 Oct 2012, 4:54 AM

Dear TrueHeart

I don't know how the others feel but I think your posts have helped me more than my posts have helped you. You are amazing. It probably follows that your mother is also amazing. I hope your remaining days together will be amazing. I will follow developments with great interest and try to help if I can.

Peace and Love

Tian

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Reply by TrueHeart

04 Oct 2012, 11:27 PM

Tian - it brings great joy and comfort to my heart to know that my posts have helped you! I too hope that our remaining days together are amazing!

The shower challenge
Last week, when I gave my mom a shower to wash her hair, she had a terrible adverse reaction that scared both of us. Her breathing became very laboured, her blood pressure dropped and her heart was pounding. It took her the entire day to catch herself. This was the day before we knew about the blood clots!

She has been dreading the next shower ever since and delayed it until today, when she just couldn't stand the way her hair felt anymore. So, we approached the shower this morning with extra care. First, we did a "dry run" to position the shower chair, shower hose and have a feel for the positioning of everything. Then, I adjusted the water temperature and flow to be lukewarm and gentle. I stood behind her with the back of the chair in front of me, gave her a facecloth to cover her eyes to protect them from soap sting. I told her to tilt her head back just slightly, and then we proceeded.

Today, everything went very well. She was so relieved, she felt so much better and expressed her gratitude several times. The experience of caring for her at these intimate levels is tenderly reminiscent of caring for my children when they were babies/youngsters. It just feels so natural. There was no embarassment or shame of any kind from either of us.

She is very vulnerable right now. I was born in the year of the Dog and she often jokes that I'm her little pit bull. Like most dogs, I sometimes growl or bark, but I rarely bite. I'm very slow to anger and devotedly loyal to those I love. For the past 10 months, I have accompanied her to appointments, stayed with her all day when she was in the hospital 3 times and for the past 2 months, since her definitive diagnosis, I have spent the days with her during the week and slept over several nights.

We try to keep busy, according to her energy levels. Today, after I gave her the shower, I came home to get my daughter. When I left, she told me she felt better than she had in ages. On the way back, we picked up some Falafals and Fatoush salad. We had a nice lunch together - but I noticed that my mom looked distracted and tired. While I was gone, she did laundry - even though I suggested she wait....but she was feeling strong. She even did her exercises - both her morning bed ones, and the standing at the sink ones! She was dressed and ready to go. She wanted to pick up some of her favourite cheese and some Perrier.

My daughter was on her way out of town and we dropped her off downtown at the bus terminal. Afterwards, we went to get the cheese and a few other things. Her steps are so tiny, and so slow. The walk around the grocery store was laboured and yet, a great chance to get some exercize in. We made one more quick stop and then back to her place. She looked tired, but happy. She looked at the time and was shocked that it was so late already. She said she liked how fast the days go when she goes out. She doesn't seem depressed like she was at the beginning of the week.

My wonderful niece is with her tonight. My mom once told me that when she gets down, all she has to do is think of her face in her mind's eye and she instantly feels uplifted, if only for a moment. Her grandchildren, especially my sister's daughters, adore my mom. They were very close from the moment of their births. I was living away from Canada at the time, and my brother didn't have any children yet. My son was born the same year as my sister's youngest. Their bond with both my parents is a blessing in all of their lives.

I've been noticing that my mom and I are becoming psychically linked...today, when we were in the grocery store, we were talking about Coconut water and the benefits of it. After paying, we slowly made our way to the car. I settled her in and then emptied our cart into the trunk. I returned the cart to the coral. On the way back to the car, I was thinking that we better refrigerate the coconut water, otherwise, I don't think she'll like the bland taste. I get to the car and before I can say anything, she said "can I refrigerate the coconut water - will it taste better?" I laughed and said, geez mom - I swear you are suddenly able toread minds, and I told her what i was thinking on the way back to the car.

I don't know if the tumors are pushing on her brain in some magical way, or if the time of rapture is approaching.
Peace and Love, TrueHeart

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Reply by TrueHeart

07 Oct 2012, 2:48 PM

Last night, the whole family gathered at my sister's in Thanksgiving for a feast. There were 18 of us! This may be the last time we celebrate a holiday with mom. It was bittersweet. Mostly, because in the back of everyone's mind was the fact that mom is terminal. Over all these years, we haven't been able to gather the entire family for a holiday dinner. My brother usually goes to his in-laws with his wife and kids...and my sister, who hosts these affairs, usually finds it too much to handle a group so large. Both of them put aside their druthers, and everything went smoothly. We all pitched in with dinner - one of my nieces made a soup and some yummy raw dessert balls; my brother made the potatoes; I made some fish and some stuffed portebellos; my other niece made a cake; my sister's sister in law brought cabbage rolls. My sister cooked a turkey and a ham and we had lots of veggy side dishes. We set up a buffet style spread and everyone served themselves.

Dad is the oldest among us at 80, and my youngest niece is the baby of the family - she is turning 9 later this month. Ironically, they were the two most dramatic last night. Dad had a wee bit too much to drink and my niece is still prone to tantrums. haha

Mom doesn't like it when dad drinks, and she had her "tolerant, but annoyed" face on by the time dinner was done.

Meanwhile, sometime on Friday afternoon, I lost my voice - entirely. All I can do is squeak and whisper. It started with a sinus congestion a week ago - I took all kinds of care to ensure I wasn't going to pass this on to mom. I wore a mask, used hand sanitizer frequently, and wiped down everything I went near with antibacterial cloths. So far, it seems to be working. I think I picked this up at our last hospital visit. That old adage about a hospital being the best place to get sick is true.

This week has been strange. Mom seems better than she has in months. Her vast improvement has us all mystified and wondering. Our gratitude is mixed with apprehension. We don't want to become all hopeful and feel like the crisis has passed, because deep down, we all know that it really hasn't. Personally, I suspect the meds. She hasn't had a seizure in over a month. (yay) - the fragmin seems to have her blood clots under control - which means she isn't in pain. (yay) and the dexamethazone seems to be keeping the swelling around the tumors down to a minimum, which minimizes her symptoms - she isn't as wobbly, or fatigued as she was just a month ago. She is sleeping through the night, thanks to a sleeping pill that we added to the mix about 3 weeks ago- which is a real blessing because if she doesn't have a good night's sleep - her symptoms are aggravated. Her anxiety levels are down too - especially since we've been taking turns spending the night with her. Just knowing that she isn't alone makes her feel safer.

One of the best things to come out of this experience, is the realization that she is dearly loved by her whole family. Love is the best drug for her!

A month or so ago, we were really focused on "how long". Now, however, we have all gotten into the routine of adjusting to the daily demands of the situation. Sometimes, I catch myself thinking "long term", but a little voice in my head reminds me that our time together is limited. My prayer is that she goes quietly one night in her sleep - that her condition doesn't deteriorate to the point where she becomes bedridden and in constant pain.

For now though, One Day At A Time is what we have and what we are grateful for. If we had opted to follow the recommended treatment, she would be sickly, weak and in a chemo fog - and possibly even hospitalized ~ robbing her and all of us of this opportunity to enjoy the quality of time we have left with her.

This thanksgiving, I am filled with gratitude for her choice to opt of treatment.
Peace and Love

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Reply by moderator | modératrice

09 Oct 2012, 3:11 PM

Dear Trueheart,

Thank you for this lovely Thanksgiving message. Isn't it amazing that when the focus shifts from "how long", you're able to embrace the quality of the "small" things (that aren't so small). I especially love your last line "This thanksgiving, I am filled with gratitude for her choice to opt of treatment."

I think you will relate to NatR's post:

Enjoy the Present.. Today:)

Thanks for sharing your Thanksgiving with us. Who else has a Thanksgiving story to share?

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Reply by Cath1

12 Oct 2012, 6:09 PM

Dear TrueHeart:

Your posts are beautifully descriptive and I love all the fine detail you add which paints a vibrant picture in my mind of your Mom's and your experiences while you prepare for the end of her life while simultaneously, and even spontaneously, living each precious moment. Even though you are dealing with your Mom's illness and all that entails you both are able to embrace life and to live it so authentically in the moment. Your loving attitude comes through your writing, TrueHeart and I am sure you are a great blessing to your Mom at Thanksgiving and always!

Please keep sharing these marvelous snippets of your special time with your Mom as I am sure many people are touched, as am I, by your ability to sprinkle some magic and your hopeful and grateful perspective on how it feels to help the mother you love so dearly as her life is nearing its end. I hope you have many more days together with your Mom feeling psychically connected with one another until her "time of rapture" appears. I believe when we are aware, feel, think and love deeply, we remain open to all possibilities. The close connections we cultivate with our loved ones here on earth are the immortal ties that bind us even after death.

With affection -hugs- xo
Cath1

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Reply by TrueHeart

13 Oct 2012, 12:40 AM

Hi. I'd like to express gratitude to all the loving people who take the time to read my snippets, to borrow Cath1's reference. I'm very touched and soothed by your kind and gentle responses of love and encouragement. I feel blessed to have discovered this safe haven.

This week was upsetting. As I mentioned earlier, I lost my voice last Friday. Well, I discovered that I was pretty off balance and ended up sick. Fortunately, my brother took this week off, so he spent a lot of time with her during the earlier part of this week. He spent the night, gave her her injection, brought food his wife made for my mom and was just wonderful with her. There are some past hurts between my brother and my mom. On my mom's side, she loves him more than she holds any kind of bad feeling about the past. She is very pragmatic that way. I'm happy they had time together on such intimate terms. I'm sure it was healing for both of them.

Having the entire family for dinner at Thanksgiving was a blessed moment, but like all family gatherings, old dramas set conditioned responses into motion and we had some quiet tensions brewing from many angels.

Being unwell, and sensitive to the underlying stress of the dynamic helped me to come to firm decisions - or commitments to myself. It brings joy to my heart to spend the time caring for my mom. Joy is a sign of following the heart. I commit to follow my heart. It is important that I share the care of my mom with the rest of the family. For myself as well as for each of them. We all have our unique relationships with mom, and we all need to say goodbye in a way that feels right for each of us. I need healthy bounderies, which I intend to clearly define to others as the need presents itself.

I realize I became ill because I was neglecting my own self care. I'm commited to make healthy changes one by one, including drinking less coffee and finding an outlet for myself. On my way to my mom's there is a friend of mine who teaches yoga. This is something I have wanted to do for months. Mom likes her alone time, as I mentioned before. It would be balancing for both of us if I schooched away for an hour to go to a yoga class and then come back and make dinner before I head back home.

Mom lives in another community, so once I'm at her place, I don't leave until I head home. The yoga class would be a good release. Get to bed earlier. I'm commited to proper rest. It has been stressful. I saw a post on facebook this week that talked about giving the adrenals a rest and give them a chance to recover from excess stress. The message was promoting getting to bed by 10pm for 10 days. The adrenals are oddly linked with timing, like so many little glands in our bodies. So, I'm loosely easing in to this to make it a habit.

Finally, being self-employed gives me a lot of flexibility, but since the end of July, I've been pretty focused on mom and the journey we have been thrown into by the universe and divine timing. There's no arguing with life and the things that happen. I've been neglecting the development of my business. Again, I'm doing the "taking baby steps" approach - but commiting to devoting some focus and enthusiasm for doing what I love!

Creative time management. Wish me luck!

Mom has been doing great this week. Fragile, but lucid. Not in pain. The swelling is going down on her leg. She's been sleeping with it elevated on pillows at night - that really helped a lot. There was a lot going on mon-thu, so today was finally a "free" day! So, today, we went down to the fabric district for lunch at this cool italian place. On the way there, she casually said "It is quite awful how we refer to persons with handicaps - invalid - like we aren't valid somehow - we are IN valid. No value." We talked about that a bit and then, she forgot about it. My daughter was with us, so we kept things light. It is so easy to slip into a negative state of mind when death is staring you in the face.

Honestly, two weeks ago, we thought her time was near, but this week, I feel hesitantly optimistic that she could be around for Christmas....maybe..... I also keep reminding myself not to dive into the illusion that she could be with us another 6 months. We've been riding this roller coaster for 2 and a half months, and we've seen a lot of highs and lows. Again, the "take it one day at a time" motto is my mantra. Meanwhile, it is good to have a few plans here and there - something to look forward to everyday, assuming everyday that there will be another tomorrow for her, no matter what.

Thanks again for this opportunity to express my heart's journey here.
With love, TrueHeart

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Reply by Tian

13 Oct 2012, 2:07 AM

Dear TrueHeart

I think one of the things that make your posts so appealing is that they inform so much on life. However I'm not sure about using Facebook as a source of information for maintaining your health. I put more faith in clichés which are clichés for a reason. Ergo: Take things one day at a time and take care of yourself.

Tian

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Reply by Brayden

13 Oct 2012, 3:44 AM

Dear Trueheart,
I find reading your posts so inspiring. You amaze me with your wise decisions. I hope many caregivers will read your posts and learn the hard lesson that you cannot neglect your self-care. You came to grips with that the hard way but found your own solutions and can teach others. I also like the way that you are obviously dealing with family dinamics. That is so good to see. I just want to give you encouragement as you as you perservere.
Peace,
Brayden

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Reply by TrueHeart

16 Oct 2012, 12:39 PM

Just as I feared, mom's improvement has been short lived. Friday, she was tired out from our outing - and took an afternoon nap.
My sister expressed some concerns to me on Saturday. They went shopping together and she noticed that mom was hunched over and wobbly again. She was pretty steady and standing up straight on Friday. Saturday, she didn't have the energy to do the usual routine and went home early to nap.
Sunday, I went to my sister's for dinner and mom looked really tired, a bit confused and seemed sad. I cuddled up with her on the couch. I asked her how she was and she made a wave of her hand telling me she was so/so.
On Monday morning, my nieces were with her and my youngest niece was still there when I arrived. She was obviously upset because she hadn't seen her grandmother for over a week as she was away. She noticed a marked difference and it frightened her.
After she left, I noticed the same hunched over stance, and saw that she looked tired. I also noticed that her left foot seemed a bit more swollen than it was on Friday. There also seems to be a raised welt of sorts on the top of her foot. I examined it more closely, and noticed that her right foot was cold, but her left was warm. She told me that when she woke up that morning, her left big toe was hurting her. I'm worried that a clot is on the move.
I advised her to keep the foot elevated as much as possible for the rest of the day/evening. I told her we would call the family doctor if things didn't improve by the morning. We have an appointment on friday, but I don't think we should wait.
I came home and did more research to try to understand. So, I read some articles written by doctors about PE and DVT complications with cancer. Apparently, about 15% of cancer victims develop thrombosis....and as many as 47% die from this complication. Though she is on anticoagulant treatment, there is a high risk for patients with brain tumors to have a bleed, and there is still a risk for a clot to dislodge and travel. In conclusion, the articles I read indicated that life expectancy is shortened considerably by the advent of blood clots. Additionally, many articles I read suggested that blood clots usually only develop in patients who are stage IV. Because we never did a biopsy, we really didn't know what stage mom was in...but now I suspect she is stage IV.
I've concluded that if we hadn't sought treatment for the blood clots, she might already be dead. At the very least, I am grateful that she is still with us and isn't in any significant physical pain thanks to the Fragmin.

I'm not sure what, if anything, can be done at this point. Will they increase her Fragmin dose? That could certainly provoke a bleed in the brain. Many of the articles I read pointed to using caution with anticoagulants and brain tumors because of the high risk of a bleed in the brain. What else can we do? Every drug we use is like a double edged sword.
The thought of her passing stirs up a lot of emotion from deep within me. I've been spending all my days during the week with her for months now. Even though I know she is palliative, suddenly, the thought of her death and grieving her is surreal. What will I do without her in my life?

Yesterday, the grief in my heart for my friend who passed away 6 weeks ago hit me very hard. I was on the phone with her sister, and the two of us just cried long distance. I talked to her daughter on Sunday, and she is struggling to come to terms with the aftermath. Giving away her mom's things, selling what she can, packing up the home they shared in preparation to move. She confessed she cannot visit her mother's grave alone, and has difficulty relaxing at home without her mom there. I miss her so much. She was only 56 and died such a horrible death. As soon as I can, I plan to go to her daughter, visit her grave and say a final farewell.

Everyday since mom has been diagnosed as terminal, I've just been dealing with all the details of keeping her comfortable, taking her to all the appointments, ensuring her medication is organized and administered, cooking/cleaning, bathing her, getting her out of the house etc...all of which gives the illusion of being somehow in control of something. The reality is, nothing is in any of our control - especially the end. I think at some level, the grieving actually begins with the diagnosis. Incurable, inoperable, terminal. Bam!

I've been doing a lot of crying over the past few days. My friend is gone and soon, my mom will be too. Cancer sucks.

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Reply by Tian

16 Oct 2012, 1:37 PM

Dear TrueHeart

Yes, cancer sucks. But though you have no control over the ultimate outcome you have had a tremendous impact on your mother's quality of life. We know because you have shared your experiences so wonderfully with us. You should not belittle what you have done yet it's understandable that you have done a lot of crying over the last few days and there will be a lot more crying to come. But your mother is still alive and taking one day at a time means still trying to make her as comfortable as possible. In that regard I'm all for trying to accumulate as much information as possible but even physicians when dealing with their own personal issues know they should seek help from others. So don't hesitate getting help for your mother when she needs it.

Some days are worse than others and the worst are yet to come but you have been amazing. All mothers hope to have daughters like you.

Tian

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