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Reply by Diana2012
16 Oct 2012, 1:55 PM

Hi TrueHeart,

Cancer sure does suck! You're right when you say that the greiving begins with diagnosis.  I felt the same way when I found out that there were no more treatment options for my mother-in-law.  It's a terrible feeling, feeling helples , but the only thing you can do right now is keep doing what you've been doing. Spend time with your mom, take her to appointments, help her with her needs and make her feel comfortable.  We will never understand how the dying person feels, all we can do is be with them and let them know we love them...and I think that's exactly what you have been doing with your mom.

Grieving is natural..and crying is normal.  It is definitely understandable that you have done a lot of crying lately...you have a lot on your plate and it's very stressful being a caregiver to a terminally ill family member.   

There will be days when your mom seems to be improving and then there will be days when you feel like the end is near...there will be good days and bad days.  I experienced this with my mother-in-law at home and when she was in palliative care in the hospital.  One day she wouldn't even talk and the next day she would have the strenght to sit up on a chair.  It was hard to go through this, but the only thing we could do was spend time with her and talk to her even if she didn't respond.  It was the most  heart breaking experience I have ever had, but it has made me cherish life and family so much more.         

Personally my husband and I wanted to know more information on my MIL's dying process so I knew what to expect.  It helped me cope with the fact that she was dying.  I found great information online.  If you the type of person who wants to know the blunt truth, I suggest you do some research (if you haven't already) on your mom's condition....it may help you accept her dying and the process.  

You're a great daughter for what you are doing....keep it up.

Keep doing what you've been doing with your mom, cherish every moment.
 
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Reply by Cath1
16 Oct 2012, 4:26 PM


Dear TrueHeart:

There is so much I can relate to in your posts that I don’t know where to begin . . . or to end. I could literally write for days about what you are going through as it brings back many memories of what I went through when my Mom was diagnosed with dementia: the progression of her illness;  the complications of infections, my all-consuming focus on her well-being, the hours and hours I spent researching her health hoping to come across words that would lead me to hope for her future, my daily involvement in her life as I tried to make her experience with confusion and disorientation feel somehow manageable for her and for me. Every spare moment I had I devoted to my Mom and to helping her live the best life possible in her circumstance, and while I was immersed in caring for her, spending time with her, loving her more fiercely as her fragility increased daily, I could not predict my mother’s death nor could I prepare myself for my life without her in it.

I discovered during my Mom’s last six months of living the unpredictable nature of life and illness when what I most wished for was some sense of control over the situation. I needed support and sought out information that I could trust to help me feel able to process the truth and to learn to accept it. Looking back, I now realize that there is never enough time or help or information that can prepare one for the unimaginable.  In my Mom’s case, though she had lived with a diagnosis of mild dementia for several years and her health had been stable, she died within a week of becoming very ill from dehydration at her nursing home. I was not prepared for her death as I had not considered it a possibility until her last few days on earth when it became abundantly clear that I had no choice but to accept the inevitable outcome.

TrueHeart, your emotions are so painfully familiar to me. You will feel, as you have expressed so candidly here with us over this past month, times when you feel some sense of control by doing the practical and necessary things to help your Mom get through day by day. It is amazing how these daily tasks of loving support can help our loved one to feel less alone, less frightened and more protected and cherished.  These concrete acts of love also help to keep us grounded and able to put one foot in front of the other to keep going, as we must. The alternative may be that we would all simply collapse under the psychological stress of caring for a dying loved one while dwelling on a future that is overshadowed with the unavoidable sorrow to come. I believe you are right about control, and while it is a very human desire to feel in control, it is an illusion as we learn in life that we don’t have much if any control over when and how life will end. We of course all realize this truth logically and can even speak about it dispassionately in conceptual terms, but when life forces us to travel from the conceptual stage of knowledge to the undeniably personal realm of direct confrontation with death, we genuinely struggle. You are not alone in your struggle. The most important thing for you to remember and to hang on to right now is that you are lovingly supporting your Mom and your family during this traumatic time in her life and yours despite all the complex emotions you must deal with. You are an exceptional person, TrueHeart and I know you have in your heart healing powers. Allow them to heal you as you reach out to comfort and heal others around you.

I think your grieving indeed began with your Mom’s diagnoses and as you witness her decline your grieving will rise in intensity and power as you begin to face it and feel it. Speaking with your late friend’s sister and daughter has naturally triggered in you compellingly sorrowful feelings and brings to the surface the reality of your loss of your friend and which naturally leads you to begin imagining your life without your Mom. It is heartbreaking that while you are trying to come to terms with your friend’s death, you are also trying to accept that your Mom’s life is nearing the end.  I know today and in these past few days you have had to endure a lot of sadness as you mourn your friend more fully and as your Mom’s health changes with the day. I hear your heart and feel it breaking, but I also see your incredible courage! Your sensitivity is a gift. It may not feel like it in this moment, but please trust that you will find within you the ability to accept whatever happens whenever it happens. I hope your heart will find comfort in the knowledge that you make a significant difference to your Mom, to your family and your friends, and to us. Thank you for sharing your low points, your hopes, your insights and experience here with us. Your words are inspired and inspiring and you are helping others to find healing and hope and I hope healing and hope finds you! Cry as long and as hard as you feel the need, TrueHeart. You will not be crying alone.

With affection -hugs- xo
Cath1


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Reply by TrueHeart
17 Oct 2012, 8:16 PM

Thank you again everyone for your kind and supportive words, and especially for taking the time to read my posts and respond.

It is an emotional week. When I got here on Tuesday, mom's foot was back to normal, so we seem to be out of danger for now.
We went to get her hair washed, cut and dried. We had to take the Fragmin with us, in case we didn't reach back home in time to administer the injection. Good thing, because we waited a while for the hairdresser to be free.
That was all good, but when we got home, we checked the mail. There was a card addressed to her. Got upstairs and there was a phone message. It was one of her girlfriends - a hiking friend. Mom really misses hiking on the local trails with her hiking group. After listening to the message, she broke down in tears. I comforted her and she said, between sobs, I want my life back. We cried together. The card was from another one of her hiking friends. It was a very tender note that started with "I miss you so much..." She was inconsolable.
Then, this morning, on the front page of the newspaper, was a photo of the trail her friends and her would walk every fall. Well, that just stirred up yesterday's sadness.
She is grieving too - grieving the life she lived before the tumors.
She made a date to meet for coffee on Friday with her hiking friends. She is iffy about it, but I said it would be good to see them and how much they miss her too. It is hard for her.
Gotta go, mom is up and she wants to use the computer.
Peace and love
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Reply by Brayden
18 Oct 2012, 3:19 AM

Dear Trueheart,
I too have followed all your posts and feel that you have had very kind responses. I cannot believe how different every day is for you and that you do not know what tomorrow will bring. Yet you handle every day with such wisdom and consistently show such deep love for your mother. You are amazing. She is so fortunate to have you and I can tell that she knows it. Please keep posting.
Peace
Brayden 
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Reply by TrueHeart
19 Oct 2012, 12:08 PM

Cath1 ~ Thank you so much for your last response. I keep reading it over and over, and each time, it is like drinking a cup of courage. Thank you for your profound understanding - which I know comes directly from your own personal experience with your own mother. Sending you hugs (( ** ))

This week, I've watched as my mom seems to shrink before my eyes. Her energy levels seem very low and she is very unsteady on her feet. She had another fall this week - nothing serious ~ no injury. The issue with falling is that she can not get herself back up. Her left side is "heavy" and her right side doesn't have the strength to lift herself. So, until someone helps her, she is stuck. Fortunately, it happened when my dad was there.
Over and over this week, she has expressed to me that she is tired of this. "This" meaning being sick and having lost the life she was living so fully.  

Additionally, this week has been odd in that the feeling is different somehow. It worries me that her time to go will be sudden and soon. 
When I think back to earlier this year, before the diagnosis - I recall how she started to veer left whenever we walked. It never occured to any of us that this was a symptom of something serious.

The nurse came on Wednesday. I wish I could sing her praises, but she just has a knack for saying the most inappropriate things. When my mom expressed that she was feeling depressed, the nurse looked at her with disbelief and said "why"? My mom was so shocked by her response, that all she could do was look at her, at which point I piped up that mom wants her life back - I mentioned the hiking friends and she then suggested that mom take a wheelchair. At which point my mom looked at her with annoyance, and said, "we hike on forest trails, not paved sidewalks". As the visit continued, and we planned the following appointment, she looked at the calendar and told us her father passed away on the 1st of november and how that is a good day to die...Really? there is a good day to die (and it is only about 2 weeks away.) Geez, lets see what we can do about that?!?! When we first enlisted the home care visits, she was coming twice a week, but one week, about 6 weeks ago, my mom was so annoyed with her silliness that she said to me - does she really have to come twice a week? So, we shaved it down to once a week, and we decided to see her family doctor every week or two, depending on her condition. 

 Yesterday, mom was starting to get cabin fever, so we went out for an early light lunch with my daughter. We had a nice time together. Mom liked the cafe we went to. We had planned to go and pick up a few things and stop at the bank on the way back, but she was exhausted, so we nixed that idea. We went home. I could see she was grateful to be home, in cozy clothes and on her comfy chair.
We finished two crossword puzzles this week - and it usually takes us an entire week to finish one. I don't know if they were easier than usual, or that we just dedicated a lot more time to them. Fortunately, she had another one from late september that we hadn't even started yet. It takes a good bit of concentration, which is a great distraction. Her eyesight is really failing these days and she has to use a magnifying glass to see the clues.  

The weekend is here, which means a couple of days off for me at the end of today. I came home very weary yesterday, even though we didn't have a very active week. Her weakening condition causes me to be on edge. Every night I go to sleep with the phone, just in case. Every night I try to prepare myself for the eventual dreaded early morning phone call telling me she is gone. Each morning that I wake up, I think about what she is enduring day after day. Several weeks ago, I dreamed that the phone rang, and it was my sister calling to say "she is gone" and me answering "already?". That dream comes back to me - hauntingly.
I haven't done very well with my own self-care this week. All my commitments and promises to myself seem very hard to fit in. When I do have some down time, all I want to do is turn the whole world off. Getting to bed early is still working for me, and gratefully, I am sleeping well despite the situation.  
I talked to a dear friend on the phone earlier this week. She lost her father suddenly several years ago. She expressed sympathy for the lingering knowingness of the impending death of my mother. Honestly, I remember very well how terribly devasted she was by her father's sudden death. Sudden or lingering, the death of a loved one is never easy. The advantage of knowingness is the opportunity to express deep affection and unconditional love...the disadvantage is watching a loved one suffer - whether it is physical or emotional pain. Even though there is time to "prepare" - emotionally and time to put "things" in order, the reality is the same. Still, I am very grateful for the time mom and I are spending together, and also very grateful for being in the position to be able to be there with her during this time. Last year, I closed my business - which was a very demanding job - I worked 7 days a week about 80 hours per week. I am grateful that I didn't have to wrestle with my conscience in weighing my personal priorities. Closing my business has turned into a blessing in disguise. Just around the time that I was wrapping things up, mom got a terrible bladder infection that didn't respond to antibiotics - she had 3 rounds before the infection finally cleared up. Little did we know then, that was the first symptom of her brain tumors. Divine timing is a mysterious and wonderous thing!

Wishing all of you a love filled day

Peace and Love, TrueHeart    
 
  
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Reply by Cath1
22 Oct 2012, 3:11 AM

Dear TrueHeart:

Thank you for sharing with me your cup brimming over with compasssion! Cheers to you as you drink from your "cup of courage"! I am sure the courage you have within you could fill oceans!  

I'm so sorry to hear about the visiting nurse and her insensitivity toward your Mom and to you, but such behaviour neither shocks nor surprises me as my late Mom and I had our share of similar unwelcome experiences. I sometimes wonder why some people choose to work in the healthcare field when they don't have the most important quality of empathy.

You are going through so much TrueHeart, and I am glad that you realize that you must take care of yourself, but I also understand that despite how reasonable and rational that sounds on paper, in reality your situation does not afford you nearly enough time or energy to focus on yourself and your own needs as you should. You are doing the best you can and from where I am sitting, you are doing an amazing job of trying to balance your Mom's needs and your own! I hope your weekend proved to be a restful respite from the past week.

I cannot reiterate enough how much your posts are helping others to understand the emotional and changing complexities of caring for a dying loved one. You are a beautiful writer, but most important, you are a beautiful and compassionate soul!

Wishing you many cups of courage to sustain you as you face the week ahead - one day at a time. We remain here for you to listen to your heart and to share with you ours.

With affection -hugs- xo
Cath1     
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Reply by TrueHeart
23 Oct 2012, 4:46 AM

I embraced some down time on the weekend and started the morning off with brisk determination to be grateful for the day ahead.
I headed to my mom's to get dad to bring him home to walk the dog. Dropped him off there, then drove my daughter to start her new job. On the way back to mom's I noticed what a beautiful day it was. I regretted dressing for fall weather. The weather was dismal and chilly all last week - with the sun peaking through clouds desperately, but never winning for long. Tucked away in the back of my mind was finding a window of time to take mom to the mum show. When I got to her place again, we talked about the beautiful weather and I brought it up. Her eyes lit up and she said I would love to do that.
I made lunch for us, gave her the dexamethasone and while we were eating, I said 'we'll have to be back to give you the fragmin injection". She looked at me and said - back from where. Oops, she lost the memory of our plans to go to the mum show. We're going to the mum show - I'll bring my camera. I made her some tea and let her enjoy not rushing.
The mum show was awesome. I took a photo of her in front of a giraffe made entirely of mums. I took another 45 pictures, which I uploaded and created an album to look at with mom tomorrow on the computer. Her eyesight is more of a concern these days.   There was a market there today and we both made a small purchase at different booths and looked at everything.
At one point, she seemed very disoriented and a little overwhelmed. She saw a bench and said she wanted to sit down awhile. I let her pause and took a few more photos. I looked over at her and she looked absent. Her mouth was agape a bit and she looked ill. She hasn't really looked very ill throughout this path - the last path. In my heart, I know it is the ultimate transformation of the human condition and I earnestly believe that we are so much more than our earthly bodies. As I shuffle along side her, I am comforted knowing she is not alone for her last " hike".
I'm having difficulty sleeping tonight. I'm usually  sleeping deeply  by this time. I think I needed some "alone" time myself.  
It was a good day today. We didn't have any medical appointments or visits. Tomorrow, we go back to the thrombo clinic to see what condition mom's blood is in. Her family doctor suggested another MRI for mom and sent in a requisition. We have an appointment on Wednesday. Every time mom needs to see a specialist, her family doctor (must) waves her magic wand and we have an appointment either the next day or within 3 days. My mom and all of us are absolutely grateful for our wonderful family doctor. Her praises I will sing out loud!
We don't get another "free" day until Friday. So, we have a busy week ahead and two copies of the same crossword puzzle!   
Thank you Cath1 and Brayden , Tian , Diana and Madame la monitrice xox

I am glad that I was guided to this message board. Wishing you all a day filled with peace, love and gratitude.

TrueHeart     
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Reply by Tian
23 Oct 2012, 2:31 PM

Dear TrueHeart

I think you don't realize how much you inspire us with your updates but that's OK because you've got bigger things on your mind. I'm very gratified if you think I've been of help to you. I understand that seeing your mother uncommonly ill would have a big impact on you. But I would just caution you that it doesn't mean that it's all downhill from here. Also, as much time as you spend with your mother, you're not with her all the time so you don't know if she hasn't looked that way before. One day at a time, one day at a time. I hope your busy days ahead bring only pleasant surprises.

Tian 
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Reply by Plum1
25 Oct 2012, 12:40 AM

Dear True Heart,
When I logged into Virtual Hospice today, I was immediately drawn to your name. You truly live out that name as you share your feelings so honestly and openly. I am so happy for you that you are finding this helpful, and that the response that you are receiving is supporting you in the very difficult time you are living.
 
I was deeply moved by your sharing that you recently lost you closest friend to cancer. The illness and coming loss of your mother so soon after this other loss is extremely painful and a tremendous stress on your heart and whole body. I really encourage you to have great compassion for yourself, as you have compassion for your mother.

Certainly the journey your mother, you and your family, have been on with multiple doctors, hospitals, tests, diagnoses, and reactions, has been extremely difficult, exhausting, and painful. I feel deeply for your mother whose life was at stake. She certainly has shown great courage and integrity. It sounds as though the great gift of this time will be that your mother will die "whole" in spirit.

You mentioned in one of your sharings that you and your family want quality of life for your mother. It sounds as though you have been living that, and this moves me deeply. What precious moments she has been able to live with her grandchildren as she shared her vulnerabiliity with them and received their loving support; and what a precious time she is spending with your father. It sounds as though you and your siblings are offering a safe and loving environment for her to share her feelings and needs. And so she was able to share with you her fear of being alone at night. I hope this can continue, and I am sure it will. This painful time is drawing you together as a family, and surely this will continue to be a source of strength.  The medical community is important at a time like this, but nothing can replace the healing power of those who love.

Hopefully, this website is a safe space for you to share all your feelings and questions. I am grateful for your trust. Is there anything else we can respond to? Know that you are in my heart and prayer.
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Reply by TrueHeart
25 Oct 2012, 11:47 AM

Thank you Tian. It warms my heart to hear that my posts are helpful to others. Plum1 - thank you for your kind words. We really are coming closer together as a family - which has both positive and sometimes challenging connotations. 

We went to the thrombo doc on Tuesday. Our appointment was at 2. When we got there, the ladies at the "check in" desk were both preoccupied. I missed the big sign at the hallway entrance that said to "wait here until you are called". There was no lineup so I headed straight to the counter with the intention to register. They started off by ignoring me, then they told me to wait in the waiting room and that they would come to get us....muttering something to each - one saying her computer crashed and she had to reboot - the other saying that she was busy....so, off we went to the waiting room. After a 20 minute wait, I went back to the check in area (the waiting room was down the hall). Now, there was a line up. I waited my turn, but when I got to the counter, I was surprised at their response. The one lady said to me "where did you go? we thought you left". I said, the waiting room - but no one came to get us. Did you register? huh?? They weren't being very nice to me and that triggered one of my buttons. I told them how while I'm sure they are very aware of all their rules, systems and do's and don't's because they do this routine daily - that the majority of us on this side of the counter  are only here for an appointment and are not so familiar with their protocols. I heard the person ahead of me say he had an appointment with the same doctor, and because he was one ahead of me, we had to wait an extra half hour for the doc to see us - even though his appointment was later than ours. Argh - I really dislike when people abuse their "power".
Despite the petty nonesense of the clerks, the appointment went as I had expected. The (very nice) doctor was happy to see that mom responded very well, without negative side effects, to the fragmin. Then, she explained that because of mom's condition, her body would revert to clotting if she stopped the fragmin. So, she gave us a prescription for 30 days, with 12 repeats. Mom was amazed. A year! I could tell she wanted to feel optimistic, but didn't dare. On the ride home, she expressed her frustration at the roller coaster of events and opinions. 
The next day, we went to another hospital for an MRI. The last MRI that was done, was back at the end of July when they originally diagnosed her. Mom was of two minds for this test. As much as she wants to know "how long" - she doesn't want to either. When we got there, they had experienced techinical problems earlier, which had messed up the schedule for the day. They were behind by an hour and a half. So, we waited.  
Afterwards, on our way home, I became concerned. She told me that it was hard for her to keep still because her bottom lip was quivering the whole time - o no. I said - did you have a seizure - mom has been seizure free for 2 months. She said no, but that she couldn't control her lips. Hmmm. So, either she had a reaction to the contrast dye, or she had a small seizure....I can't say for sure, but my instincts tell me the dye had something to do with it. 
Next week, when we go for our regular family doctor visit, we will have the results.
On the way home, she looked fragile and vulnerable. I suggested we go home instead of making a few stops to pick up a couple of things. She insisted to stick to our original plan. By the time we finished, she told me she could barely feel her left leg and she was really wobbly. When we finally did reach her house, her balance was way off. I encouraged her to sit down and relax awhile. I made some fresh juice for us and cleaned up the kitchen. She enjoyed that. I left a bit later than usual, just to be sure that she was ok. 
Today, the nurse comes, and so does the physiotherapist, and we have to squeeze in a visit to the blood clinic to check mom's dilantin levels to make sure it is still in therapeutic range. 
I'm planning to ask the nurse about a toilet seat with supports. We saw one in one of the hospital washrooms. When mom does fall, it is almost always in the bathroom - because she misses the seat - so this could be a good piece of equipment to minimize the chances of that happening again. 
I'm not going to speculate about the MRI results, but I suspect that we should see an increase in mass, but maybe a reduction in the swelling surrounding the tumors. However, I have also told myself that if for some reason, the size of the tumors hasn't changed in three months, we may need to explore the accuracy of the original diagnosis. Wishful thinking - perhaps, but it wouldn't be the first mistake in medical diagnosis.  I haven't expressed any of my thoughts about this to mom though, because she already feels like she is on a roller coaster of emotions.
I'm looking forward to tomorrow. We have no appointments - so it is a free day. My plan is to pamper her a bit. We talked about doing a guided meditation to relieve stress, and her skin is dry from the onset of turning on the furnace - so, maybe after a shower, I can use a little moisturiser on her. Then, we can collaborate on our crossword puzzle, which we have barely had time to work on this week.
This weekend, we are celebrating the birthday of her youngest grand daughter. We are getting together at my sister's for coffee and cake in the afternoon. Nothing fancy or lengthy - just a quick acknowledgement of her special day. Life goes on!
This week, I had to set some boundaries with my siblings. Dad and I seem to have suddenly become everyone's solution during the week. While it is great that dad is spending the evenings with my mom - it has thrown his routine off and is affecting his health too. Dad thrives on routine and is an early morning type of guy. He waits for me every morning - but not patiently - which stresses both my parents out - and me too, because I can feel his anxiety and restlessness to get on with his day. So, I have arranged for my brother and brother in law to swing by earlier in the morning to take him home. We started this only yesterday, but the difference in everyone's morning was noteable. Yay. We just have to iron out a few communications issues and then, we can take turns getting dad home earlier. This will give him the satisfaction of being more on target with his routines, and give mom an hour or so to herself - which she craves. It will also ease my morning stress to get there to get him home. I'm the only one who lives out of town, so, getting there takes me about 45 minutes.  On the homefront, my daughter is coming with me daily. She rented a small artist studio and got herself a little part time job there too. So, I was rushing her every morning - to drive dad home, and then drive her to the studio or work, then rushing back to mom's. I felt like I was being pulled in too many directions. Mom was happy to know that others will now be helping out to make mornings easier for dad, her and for me too.
One day at a time. One challenge at a time. Day by day, life goes on.

Wishing everyone a love filled day, sprinkled with peace and hope xo
TrueHeart    
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