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Reply by Brayden

28 Nov 2012, 3:48 PM

Dear Trueheart,
I can just feel the hectic pace that you experiencing and it concerns me. I know you manage so well but there is a limit to what we can do. I can only pray that you will find the strength each morning to carry on. You gave us all a huge tidbit of wisdom in the importance of family relationships. I have been telling people for years that they should heal their frayed family relationships because the day would come when they would regret not having a loving family. Your message and personal experience is so powerful. Thank you so much for being open to sharing it with us and not keep it bottled in. Like Cath1, I hope something good comes of your potential respite for your mother. It will not be for the lack of love that she is getting. Peace
Brayden

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Reply by TrueHeart

30 Nov 2012, 1:55 PM

Good morning

Yesterday, for the first time in a long time, mom and I just stayed home. No visits from the nurse, no appointments out of the house. I only ran out once to pick up a prescription.
I did write a post with questions to the "ask a professional" section about Mom's cataracts. The response I got came from Brenda and Cornelius - a nurse and a doctor. Their response was filled with excellent advice, insight and guidance. Honestly, it was the most helpful medical guidance I have gotten anywhere. I highly recommend this excellent resource and I am so grateful to have found Virtual Hospice. Every where I turn on this web site, brings me guidance, solace, comfort and love. Thank you to all of you here on this thread and to Coleen la moderatrice and the doctors, nurses and specialists that participate in this website.
We have decided to postpone the surgery until the new year. Mom is incredibly relieved. The doctor's appointment went much better this week. She advised us to postpone the surgery and she recommended a community resource that we have accessed. Mom is engaging in a peer mentor phone chat with a volunteer. She is a bit iffy about it, but she has only had one phone call so far. It is an opportunity for her to talk to someone who isn't a family member or a close friend - so there is a certain freedom to talk about things that she might keep from those closest to her - her fears, her grief, her worries etc....Additionally, they offer some relaxation options - one being reiki treatments. I have scheduled an appointment for her next week. It will be her first experience with reiki. I hope she finds it relaxing and that it brings her a sense of calm in the middle of the emotional storm that is raging within her.
That family drama I mentioned the other day - is really troubling her. Thoughts keep spinning around her mind - preventing her from napping in the day and making her testy, miserable and short tempered during her waking hours. Yesterday afternoon, we talked some more and I encouraged her to let it go. She seemed to lighten up as the day progressed. Hopefully when I go later today, she will be more relaxed and less obsessed with the drama.
The nice thing about December is that different members of our family will have a bit of extra time off. Since mom started having seizures again, we have stepped up our care and have tried hard to ensure that mom is never alone - I did a 19 day stretch with only one day "off". This weekend, I have a little time for myself again and next week, my niece will be around a lot and the following week, my brother will have some time off work too. So...Brayden, be assured that I will have some time for self care over the next month at least.
I don't think we will be able to keep mom seizure free anymore. She has had 5 seizures in the past 2 weeks. Her anti-seizure meds are well within therapeutic range, so it is likely that there is swelling, or tumor growth that is aggravating things. We are working on adjusting the steroid medication between 6 to 8 mg daily, according to her daily symptoms and frequency of seizures. Mom's seizures are focalized - she never has anything like a grand mal. They affect her mouth and her ability to speak mostly. They only last a minute or 2 and she never loses consciousness - but they upset her (and us) everytime. She cries everytime too. Her left side no longer reacts to the seizures like they did in the spring, and summer. She hardly feels anything on her left side anymore - while she still has some mobility remaining, it is minimal. She cannot hold things in her left hand without dropping it, her left leg drags significantly and she hardly feels a touch on that side of her body anymore.

I've run out of time again this morning. Thank you all so much for being here/there at this time. I really don't know what I would do without your support, kindness and love.
Wishing you all a beautiful Friday xo
TrueHeart

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Reply by NatR

30 Nov 2012, 2:59 PM

Dear Trueheart,

What a nice long note you shared today. Thank you for that. I am so glad to hear that you sound like you are doing better...that despite the long hours and days you are putting in to care for your mom...you have some intermittent help, people to give you a day here and there....make the most of those days.....just focus on you at those times.

Burnout is such a complex thing...I have learned it first hand.
Caregiving is such a gift...you will never ever regret what you are doing.

I for one appreciate your updates...and I know the others on the forum also do. I am not always near my computer..but read your notes and those of others who post. It is good to know that the Forum here is being utilized and that it does give you support and insight.

Glad to hear that the professionals have also given you information that helps. What a great place for caregivers to come. I certainly know how needed it is, the connection between caregiver and those that listen.

I am so lucky to have this forum to learn from and gain even more insight from the experience of others...and also from the other contributors who answer posts.
I am very grateful for the internet and the ability to feel so connected.

Wishing you and your Mom a good day, so sad that she continues to have the seizures but it seems that everything that can be done..is being done....and thank you so much for your heartfelt notes.
Best to you this Friday and all weekend;)

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Reply by moderator | modératrice

30 Nov 2012, 3:43 PM

TrueHeart,

Thank you for your lovely accolades of our team. I'm very relieved that you sought out their advice and that they were able to help guide you and your mother's decision making. Our Ask a Professional service is unique in Canada and gives all Canadians equal access to evidence-based information. It's really like having a palliative care team at your fingertips.

I would like to clarify, we receive federal and regional funding to support the work we do here at Virtual Hospice and our team members are compensated for the time they contribute to the website, including Ask a Professional. You can read more about each team member here.

Colleen

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Reply by Cath1

30 Nov 2012, 4:18 PM

Dear TrueHeart:

It's lovely to hear that you received such personal guidance and effective support for your Mom from the Virtual Hospice "Ask a Professional" service!

It's also great to learn that your Mom will explore the peer mentor phone chat! I hope she will find someone she can easily relate to and bond with naturally. It's so important that she does have a private place to air openly her feelings about what is happening to her. She may if she feels comfortable speak to the person about the family tensions that are plaguing her lately and I hope she will find it a comfort to have this outlet for her many sensitive emotions. I know you have written about how private your Mom is and participating in this peer mentoring programme may be a challenge for her at first, but I think she may come to appreciate the importance of having a safe place to unburden herself - anonymously.

I am delighted to know that our support of you as you go through this very hard time with your Mom and your family is making a difference for you! You do need to take time for yourself which is near impossible in the circumstance I'm sure, but it is necessary that you never forget your own needs as you continue to take care of the needs of so many others in your life.

During December, I do hope you will have more frequent moments of rest and relaxation as others in your family are available to help your Mom. I am hoping that the family drama will die down soon and that the holiday season will lighten and brighten the mood in the air around you all. The holidays are an emotional time for many people, but especially for those struggling with illness and loss. There is a sense of urgency about life as we focus on the wishes and needs of those we love most and strive to please them. Every memory is attached to deep sentiment.

TrueHeart, everything you are doing for you Mom and your family is a gift given freely and straight from your heart that shines with love in all seasons! Always remember that we see your light and your love as we remind you that you are never alone!

With affection -hugs- -xo-
Cath1

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Reply by Tian

30 Nov 2012, 6:30 PM

Dear TrueHeart

NatR and Cath1 express my sentiments better than I can so what they just said goes for me too. I'm wondering though if you may be premature in thinking that nothing can be done for your mother's seizures. Just as, under the circumstances, cataract surgery is not a priority now, other symptoms your mother has can be approached differently than if she didn't have all her problems. If they aren't already, I hope all the doctors treating your mother are aware that keeping your mother as comfortable as possible right now is the objective and they need not consider long term effects of treatments. Therapeutic ranges don't mean much now. It's whatever makes your mother feel better.

Peace

Tian

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Reply by moderator | modératrice

06 Dec 2012, 4:28 AM

Dear TrueHeart,
Just a quick note to let you know that we are thinking of you.
We send you courage and peace.

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Reply by TrueHeart

08 Dec 2012, 12:55 PM

Good morning Angels

I finally have a free moment early this morning, to spend a little time here.

Since mom decided to postpone the cataract surgery until the new year, we have had more time to focus on doing things other than going to medical appointments.
Before her illness, mom was a very active hiker and she enjoyed getting together with her friends to practice French. This week, it was the first time she had the time and the inclination to meet up with some of the ladies for a French date! Before leaving, she was anxious and nervous because she didn't feel focused - and was worried that her friends would find her diminished. I have been gauging her symptoms daily to determine her steroid dosage - good days are a 6mg day, less good days 8mg.....so, when I was helping her to get ready, I suggested an 8 mg dose to help her mental clarity. That seemed to help a lot, and she ended up having a really nice time with her friends.
Later this week, I brought mom for her first visit to a local center that focuses on "living well with cancer". She got her first reiki treatment. She found it very relaxing (yay) and her mood became gentle and joyful afterwards. We were both very impressed with this option of care. Besides reiki treatments, they offer meditation, yoga and support groups for patients and their family, and even their friends.
On December 17th, they are presenting a workshop for caregivers entitled Stresses of the Season - I am hoping to attend. I left a bunch of flyers and booklets at my mom's for the family to peruse and encouraged them to feel free to access their services and programs. The contact person I have been in touch with at the center is amazingly helpful and very accessible. I am grateful to have found such a resource in the community.
Meanwhile, over the past 10 days or so, mom has become more incontinent. I've discovered that adult diapers are not effective in the least. :-( She was out with my sister again and had quite an embarassing moment when she was unable to control her bladder. At the time, she was wearing a highly absorbant Poise pad inside her Depends, but that was not enough to protect her. She was mortified. Then, this week, at home, she got up from the dinner table to go to the bathroom, but didn't make it, and again, even though she had a diaper on, it didn't prevent any leakage at all. So, her and I talked about it and decided that prevention is the best approach. We discussed a bathroom visit every 2 hours to void - whether the urge is there or not. I also passed this information on to my sister and other family members. While it may be embarassing to discuss this openly with everyone, it is much more embarassing for her to have an "accident".
Any suggestions about quality products or advice for incontinence would be graciously appreciated.
On Thursday, one of my dad's sisters passed away. She was 89. Her death was not a shock to the family, as she had been declining over the past several weeks. She was in a nursing home. I hold dearly to the fond memories of my aunt and feel great sympathy for my cousins and their children. Next week, we have a funeral to go to. I am worried about the emotional effect this could have on mom. Her emotional mood has been up and down over the past several months, and I am concerned that going to a funeral could send her into a depressive state.
We are talking about and planning Christmas now. Ugh. My mind is so far from celebration. I have no time, money or inclination to shop.The family drama that began weeks ago has not been resolved and the thought of everyone faking joy doesn't sit well with me at all. Emotions are raw to begin with, and we all know that this will likely be mom's last Christmas. Honestly, I am dreading the holiday.
With much love, TrueHeart

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Reply by Cath1

08 Dec 2012, 3:06 PM

Dear TrueHeart:

Your messages are always so inspiring even when you must write the unadorned and unkind truth of how it feels to see your Mom living with cancer, to feel helpless at Christmastime as you deal with fresh loss, with family tensions, and as you anticipate more complications to come for your Mom physically and emotionally, and more sadness for you and all of your family.

I think it is because you do tell the truth that makes you so exceptional! It's not easy to choose truth when denial offers a shield of protection. You are making a big difference to others with every experience you share. I hope through your gift of writing you are finding that your courage only grows. As you express your fears and worries, you are not alone! You are helping others, all those living in the same or similar circumstances who, like you, are searching for support and answers, Every word you write is a gift, a golden gift of your true heart. You are a treasure to us all, TrueHeart - our Christmas Angel! Thank you for your brave honesty!

No natural segue here!:) Incontinence is something my Mom lived with and it did cause her embarrassment and even deep shame. You are so right that while people find this a touchy topic to openly discuss it is necessary as it is a very common problem and it needs to be addressed. I think your suggestion to your Mom that she void regularly, every two hours, is a good idea. I think also for her own peace of mind she may want to wear a pull up pantie-diaper at night - there is the heavy duty overnight kind - and a regular one in the day. If the product is not absorbent enough, she may have to use the ultra absorbent ones in the daytime too. My Mom had a lot of urinary tract infections once her incontinence progressed and I think the diapers may contribute to infections. I think it's important that the diapers be changed very regularly. My Mom had dementia so she often was not even aware when she needed to urinate or was actually voiding. She lived her last 5 1/2 months in a nursing home and they did not change her diapers as regularly as required and nor did they encourage her or assist her to void in the toilet.

I am so sorry to hear about your aunt's death. Your Mom very likely may feel more than upset by this news. Has she expressed a need to attend the funeral? Since your aunt is on your Dad's side, is it possible in the circumstances for your Mom not to go without her absence causing anyone to feel slighted? I am terrible at funerals. I cannot contain my emotions and feel for you all as you have to face saying goodbye to your aunt in the midst of your own personal sorrow about your Mom. Let us know how you all cope and know that I believe if anyone will know exactly what to do in this situation, it is you! While I do know you are capable of withstanding the fiercest storm, I hope everyone around you will rally to help you help your Mom, to be there for you as you need, and to be there for one another to get through these next difficult weeks when sentiments will be high and spirits low.

Your lack of enthusiasm for the holidays is so understandable, TrueHeart. Try not to expect too much of yourself right now. You have the weight of the world on your shoulders as you struggle with emotions that will be sadly magnified at Christmastime. Joy to the World will not be your song this year. When you feel the big feelings, I hope you will not be overwhelmed by them as big feelings dwell in very big hearts. Your heart is hurting but it is filled with courage and love. Let your love be your guide and follow your heart, it will not lead you astray. I wish you peace and hope.

With endless affection -hugs- -xo-
Cath1

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Reply by NatR

08 Dec 2012, 8:45 PM

Dear Trueheart

i want to say more but am short on time
i really wanted to recommend Tena products to you
they are very absorbent and kind to the skin
They are available at Shoppers and I am sure other stores as well

more reply later,
thank you for your long note to us all
Best wishes
natR

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