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Reply by jaindough
12 May 2014, 1:33 AM

Thank you for the replies. I greatly appreciate checking in and reading anything folks may have written.

I am writing to update our situation. My husband and I packed up the baby, the dog and all our gear into our little car and left for northern quebec on saturday morning. We barely squeezed all the gear in the car. We left as early as possible after getting up at 5am. I was very stressed, wondering how the baby would cope with such a long journey. He was fantastic and slept almost the whole way or relaxed quietly, checking out the dangly toy we hung on his carseat handle. I was relieved.

Once we arrived, we quickly set up the house with our basic necessities; baby cot, changing area, baby food set up area. Then I headed out and straight to the hospital to see mom.

She is very confused. She had argues with the doctor that she was supposed to get ready for the flight to head back home and got very angry when the doctor repeatedly explained that she already was back home. I tried repeatedly to wash her face, change her nightshirt, clean her hands. She refused. She became angry if I tried to persist.

She is eating less than when I saw her in Montreal just on Tuesday. Today for mother's day I brought her treats; chocolates, nuts, fruit. She had some chocolate.Last night for supper I couldn't convince her to eat anything. I tried eating some of her hot dinner and saying how good it was and trying to coax her to eat, but she refused.  ( I had made the mistake of feeding her candy before her dinner came.) She did eat her sorbet. Today at lunch I cut up her chicken and prepared spoonfuls of potato and chicken for her to grab and feed herself (she was getting mad that I was "feeding her like a baby.")  She ate two, maybe three bites and said she was really full. Tonight she had half a donut which a friend brought her and refused any of her dinner tray. She doesn't drink much either, just enough to take her decadron.

Yesterday was tense and mom was getting frustrated with me because she kept wanting me to bring everything home since, in her mind, we are heading home very soon. Today was a much better visit. I have learned to not dwell on issues that seem to frustrate her and just do whatever it is she wants me to do. I really wanted her to take a bath today but she refused and I prodded a bit but backed off right away when I saw she was getting angry.

I brought her flowers and treats and I gave her a pedicure and a manicure. I massaged her arms and legs with cream because her skin is so dry. I know she would feel so much better with a bath and a fresh pyjama. Today when I arrived in the afternoon, she was sitting up in a chair by the bed and I took the opportunity to change her bedsheets and linens. She is a messy eater (when she does eat) because she is progressively losing mobility and control on the right. She has also started complaining that her vision out of the right eye is very bad.

I had a lengthy chat with her doctor and her doc told me to be sure that I preserve my positive relationship with mom and to let the care team seem like the bad guys when it comes to the wanting to go home situation. She said we could potentially do a day visit home and then have her come back to the hospital, but both the doc and I feel strongly that mom would refuse to return to the hospital. The doc made it clear; the only at home care they have is a nurse that pops in once a day to check in and maybe give meds.

This is the hardest thing I have ever had to live through and I have had some tough situations in the past. There is also out little 11 week old boy to be tended to and my husband has been home with him. We have tried to make mom's house comfy for the little guy but he knows he is not at home. I think he will adjust ok. I am blessed to have a wonderful husband to support me through this. We both don't know how we're going to get through it really, but we are eachother's greatest support.

Jennifer, thank you for the candid post; I appreciate total honesty, and really I have a very good understanding of what I am facing. I keep telling myself, one step at a time.

I have rambled. I will wrap up here.


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Reply by NatR
12 May 2014, 1:34 AM

Dear Jaindough,

welcome to the forum - you have a heartbreaking story and this is the right place to be.  I am so sorry to hear about the load on your shoulders - having a brand new baby, and now having to face so much in helping your mom as her life comes to a close.

no it's not supposed to work out that way - life has a way of throwing curve balls to all of us... And it's a different plan of action  for each of us.

you have had great responses and ideas from several of the stalwart team on the forum - and I can tell that you are already mulling over how to do this for your mom.

Xenia has wonderful insight and ideas - being an excellent caregiver to her husband - Tracie and Jenn are a wealth of knowledge.
There are others here I have not mentioned - also the professionals who share advice and support
I have not been very active on the forum lately but your story touched me.  I wanted you to know that the way you deal with your moms illness and palliative care does not mean your personal world needs to be turned upside down.

if you are able to have your mom in hospital or a similar care facility in your town - you are not letting her down - you will figure out what to do that is best for you and your little family.
its great that your husband is supportive and at your side.  Your beautiful baby will keep you very busy and you will require rest to keep going.  Don't let guilt eat you up because you can't do 24 hr care at home.  Just the fact that mom will be in the same town is a great thing 

i lost my mom a year ago - she lived several provinces away / I had caregiving duties at home with a special needs grandchild.  We all do what we can - and we do what we have to do.
yes sometimes there is guilt and things aren't exactly the way we wanted them - but  we get through it - 

here you will  find that just sharing the worries, the burdens, the questions, with others who are understanding and non- judgemental - that in itself is a huge help!!!

my thoughts are heading your way,
best wishes;)
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Reply by Digger
12 May 2014, 3:53 PM

Hello Jaindough,

I have supported several home deaths, I was the primary care-giver in one, the others were with hospice.

The lessons learned and J.Jilks. speaks to this:

    • Dying at home is a 24/7 team event and requires a lead or primary care-giver.
    • Home support from government health care is limited. In BC this is one to two hours per day of personal care. The rest falls to friends and family.
    • Death has a trajectory with recognizabe landmarks.

Your recent post suggests your mom is getting closer to the end. It is common and natural to refuse food and later fluids - a sign that the final few weeks are at hand.

This is my most recent experience with an 89 year old man with bowel cancer. We spoke often of his readiness to die and he wanted to remain at home. We spoke of his shrinking world and that one day he would not be able to get out of bed at which point i said, 'That will be the day you will likely stop eating or find that a spoonful is enough'.

And that is what happened. He stayed home, in his own bed. Minimal pain. His desire to eat stopped and then take only sips of water allowed him to pass peacefully 14 days later.

Your mother might be ready to voluntarily stop eating and drinking. This is call VSED. There are studies, scientific and anecdotal, both support this choice as common and natural and that it results in what we call 'a good death'.


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Reply by jaindough
13 May 2014, 2:18 AM

I firstly want to apologize if I do not address anyone's post personally. I am sleep deprived and the end of the day is my time to myself, after dinner is done, dishes are washed, baby is fed and put to sleep and I finally have a chance to read emails etc. Know that I read everyone's posts and everyone's advice and words of their experiences are a great comfort to me,

Today was a rough day. Mom was angry from the moment I walked in the room. I changed her dirty blanket for a cozy fresh one I brought from home and she yelled and swore at me. I was in tears and she said she didn't care and that she was going to ignore me. I know that is not my mother talking, but her illness coming through.

Today mom spent most of the day lying quietly and keeping her eyes closed. I asked if she was tired and she said a little bit, but that her eyes felt better when they were closed. I think her vision is getting worse quite quickly. She had a big fresh bruise on her leg and drops of blood. I asked her how she hurt herself and she didn't remember. I brought her more treats but she didn't eat anything. I tried to get her to drink, but she refused. her mouth is so dry. I put cream on her lips, but she gets mad if I try to reapply. She always says "we'll take care of it later when I get home."

One of the healthcare workers came by to try to coax her to have a sponge bath in her bed but she refused. The worker really tried repeatedly and mom was getting angry and refused. I wanted to stay to try to get mom to eat, but she got mad at me and her friend and told us to leave. I left for a couple of hours to let mom cool off.

When I returned, mom's other friend was visiting and I was suprised to see mom in a wheelchair and the friend was wheeling her around. I took the opportunity to change moms bed linens. As I was doing that, I could hear mom yelling at the friend "quick get me to the car now because I am going HOME." She threw a fit. She yelled and swore. She tried to get up out of the wheelchair and almost fell. I ran over and told mom that the car wasn't there and she stopped. (this was a lie, but I just wanted to diffuse the situation.) It worked, but mom was very mad at both of us.

We let mom cool off and friend and I took a walk, had a good chat and cried together. She is a former healthcare worker and is all too familiar with end of life processes. She suggested I push harder for hospice admission and I have to agree. I am so scared mom is really going to hurt herself.

I had a long chat with her night nurse to let him know what the situation was and to put a note in the file that I absolutely have to talk to the doc tomorrow. I was worried mom might try to take off or do something so I wanted to give him a heads up. I wish she would take a sleep aid to mellow out a bit, but she refuses as she says "you can get addicted to those things so no way." She was taking the occassional ativan (sp?) previously to help her sleep, however. 

Nat thanks for your kind words. I struggle with guilt daily over not being able to give mom what she wants, but I know that it is the right choice. She is hurting herself in an environment where there are healthcare workers buzzing around constantly, I can't imagine how stressed I would be here at home if she were here.

Digger, I only wish that, as difficult as it would be, I could talk frankly with mom about her end of life and what she wants. I know if I could speak to my mom now about her situation (my mom unaffected by brain tumors), she would agree with being in a hospice to have a peaceful end with full medical support. I don't have that, however.

I did not see mom eat anything today. She refused her dinner tray. Her mouth is so dry. I try to get her to drink, but she says "later. Not now."

I am going to try to go in extra early tomorrow, to talk to the doctor.


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Reply by marstin
13 May 2014, 3:43 AM

Hi jd,

When you talk about your Mom, I can clearly see my own Mom throwing back the covers at the hospital and saying 'Let's go!' She too was so determined to get out of that place. You've made a good choice for all concerned to keep her in the hospital but I know that feeling of guilt that you can't honor her wishes. I also remember the aggitation and how angry my Mom would get at everyone if they touched her or said something that she didn't like. It's very hard to watch the person you love change so much before your eyes and not be able to do anything about it.

As Digger said, it is not uncommon for people to refuse to eat or drink as they draw closer to the end. It is part of the process. I saw it both with my partner and then my Mom. With my Mom we spent so much time just sitting and talking about past happy events even if she appeared to be asleep. Somehow we knew that she could hear us and would just enjoy listening. Other times, if she would allow it we would put moisturizer on her hands and feet to soothe her. If her mouth is very dry, they should be able to give you some mouth swabs that will moisturize the inside of her mouth or ice chips.

Know that you are doing the best that you can and that your Mom would be so proud of you if she were able to think clearly.

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Reply by NatR
13 May 2014, 12:37 PM

Dear jd,

i just wanted to reassure you that here you can't upset us, or hurt our feelings  because you dont reply personally or mention us.

we all understand various bits and pieces of your very busy life now / and your need for support and information or ideas.

just post what you are dealing with at the time and no worries or guilt about the forum. Ok?;)

just wanted to add that Tracie 's words were comforting to hear  - and I hope they help you :)

it's almost like you have to stand back emotionally and do what is needed with a firm resolve - this will be best, this will help mom, this will ease my burden and yet make sure mom is looked after.

i just wanted to reassure you and know you are being thought about as you deal with all the responsibilites.

as Tracie said your mom loves you and needs you. You are doing the right things instinctively and it's important that you make sure you get some sleep, take care of your wee babe - and take it one day at a time !

wishing you the best today and hoping you talk to the dr and get things figured out 
 You are in my thoughts today,
hugs NatR  
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Reply by jaindough
13 May 2014, 7:45 PM

Oh boy.

I am home now after a little break from the hospital. I got there extra early to grab the doctor for a chat. Mom was sleeping when I got there so I left her be and went to the sitting room to read for a bit.

When they handed out breakfast trays, I headed in to check up on her. Her side of the room was a mess, with bits of food and utencils on the floor at the side of her bed. On the other side, I noticed a large, dry puddle of urine and my mom immediately said "Don't even go there, it's a big mess. I didn't do it but just leave it for them to clean up." I reminded her about buzzing for the nurses when she had to go to the bathroom. She waved me off. I noticed how dirty her bed was and suggested changing her linens. She refused. I took a warm facecloth and started wiping her face without really asking and she said "whatever, knock yourself out. Do whatever you want." Her hair is filthy. She still refuses to bathe.

She is eating more today. She had a large orange this morning, and she asked me to get her icewater, which I did. I think she ate the pecans, candies and chocolate I left on her night table, judging by the empty wrappers and crumbs and food debris on the floor this morning. She asked me to get her coffee and a boston cream donut which I did. She drank her entire coffee, but didn't yet eat the donut. I left it out on her table. I pretended I wanted to eat it, but I just wanted to unwrap it for her. As soon as she started telling me "no no no I don't want it, take it home" I said "Oh but *I* want a bite." Then I set it down and as soona s she said "Get rid of it" I said "no I want to eat it later when I come back." It is like dealing with a toddler who is constantly defying my every action and word. I bet that donut is gone when I get back.

I brought a banana and she ate half of it, telling me to eat the other half. I took a bite and left the other half on a tissue on her table. I had left to go to the bathroom and when I came back, the half was gone. She seems to want to eat in private. It's odd. She never eats her hot food. She did eat her grapes though.

Today I did a lot of pretending to read my book so she could rest quietly. It made her more relaxed and she started pleasant conversations. I did not ask her if she wanted anytthing because she gets mad and says I don't listen and that if she wants something, she'll ask. At one point she said "Well Jenn, come on let's go already!" When I asked her where, she said "HOOOOOOMMMMME." And yelled and swore at me. She has been in hospitals since December so I know how fed up she is.

This morning when I snagged the doc in the hallway I told her how worried I am that mom is hurting herself and she needs a lot of focused care and she is still under the impression that she is going home. I suggested the doc having a frank discussion about options and what should come next and how very difficult going home would be without proper care in place. I wanted her to have that chat with me in the room so mom realizes that I, too, know how dire her situation is.

The doctor was excellent, underlining how mom's mobility is steadily declining and asked her how she was going to be supported once at home. Mom said "I don't know, I'll figure that out later." The doc said she strongly suggests a move to a hospice where she would be more comfortable and more cared for. I said "Just like where (stepdad) spent his final days." Mom was a bit teary eyed and said that yes, that would be best and that was what she wanted. The doc also covered possibility of day passes if we could do it.

When the doc left, I asked mom if she wanted to talk a bit more about everything that had just been discussed and she got very mad at me and said we would "discuss it later when we get home." So the entire conversation we had with the doctor, where she agreed to apply for hospice, was already forgotten. I did tell the doctor and she said "Well I thought that conversation went a bit too easily."

How am I going to convince mom that this is the best choice? How do I tell mom that she is not, in fact, going home? How do I spend the last days with my mother being so angry all the time? Do I just keep pretending that yes, we are going home, and my god why is it taking so long? Or do I try to explain to her that we cannot go home and she needs serious care 24/7 that I cannot provide? 

What do I do? 
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Reply by marstin
13 May 2014, 8:13 PM

Hi jd,

It's good to hear that your Mom is at least eating even if she wants to do it privately. You are right when you say that it is like having a conversation with toddler. Some days are easier than others, it just depends on what might trigger the anger and there is no way to gauge it. I don't know that there is a way to convince your Mom that going home is not a good choice since she was unable to retain what the doctor said to her. I found it was just easier to pretend that it was being worked on and keep my Mom from getting too agitated. As you know yourself that hospice care would be the best course for her, it might be better to pretend that everything is going in the right direction although they may have to move her to hospice care for a short time first just in case that happens The most important thing is to accept that this not your Mom's personality and that it is the illness that is creating all of this anger. and memory loss.  It's tough to not take it personally but please be gentle with yourself.

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Reply by Xenia
13 May 2014, 9:13 PM

Hi Jaindough:

I have reread your last two messages and my heart goes out to you with regards to your mother's antics and your wanting to get her to eat and be placed in the hospice.

My husband didn't want any caregivers when he first was ill.  He was still able to walk and could be left alone for an hour or so as he had the alert on his arm.  He felt he was well enough to care for himself and that I would care for him.  He is not demanding but I do believe he felt more comfortable with me around to help him.

When he became very ill this past 8 months he was able to accept that he had to have a careperson bathe him.  I let him make the decsisons, he hates when I ask him if he is in pain or how is your breathing, etc.

Perhaps your mother needs to think it is her idea about going to the hospice, perhaps she feels hot meals means she is still under care of the medical system.  Her desire to go home may be her last controlling item she has and is able to use this to be able to have family and the medical team under her thumb.  I know it is hurtful that she yells and swears but as the others have stated, it is her illness that is talking not her.

I don;t know what type of personallity she had before her illness so if you see some of the same traits perhaps this is now harder to see and bear.  The changes must be so significant that it is hard to see the mother you once knew.

I can only offer you what changes I had to learn to deal with when John refused to admit he was so ill but came around when family and the doctors told him that he was very ill.  Of course, this is different from your mother as he was able to understand his condition had deteriated (spelling).  Perhaps there is someone of your mother's friends who can reach her.  You stated one of her friends was at her bedside and she had eaten.  Would this friend consider speaking to your mother about her need to bathe, etc. 

I share your dilema and trust that with the doctor's help and perhaps someone from hospice you will be able to place your mother in care and know she is being looked after.

Take it one moment at a time and please look after yourself and your baby.  My thoughts are with you.

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Reply by moderator | modératrice
14 May 2014, 12:09 AM

Thank you for sharing your situation. And thank you everyone (NatR, Xenia, Marstin and Jenn) for responding with your experiences and resources. Everyone has been so quick to respond. I'm sure it helps to know you're not alone even when it must feel that way at times.

Virtual Hospice's team of palliative care experts have written several articles that you may find useful along your journey JainDough. For example,
Also, if you have any questions that you would like to ask directly to our palliative care team, confidentially, you can submit your concerns or questions on Ask a Professional.

I echo Xenia's suggestion of taking things one moment at a time and to look after yourself. Please give that little baby a squeeze from all of us. 

Thinking of you.
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