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Reply by Xenia

03 Oct 2014, 2:48 PM

Good Morning All:

What a sleepless night I had. John had more breakthrough pain. Administered more morphine and he finally went to sleep while I wandered around, how do you wander around a condo 5 rooms. Pretty hard but I managed and then went back to bed and slept till 4:00 a.m. then to chesterfield as my arm was killing me, went to sleep and heard my name being called at 6:30...up I get and give John his meds, breakfast, cooking oatmeal with closed eyes, feeling for pots and glasses...I am tired, but a sip of java and I get back in gear. Now John is back to bed, he does like to eat at the table so I have a few minutes to get this posted. Aides comes to bathe him at 10:00 and nurse will be calling.

In the time I had to myself I turned on CBC newsworld and at the bottom of the news there was a runner stating: 3.7M palliative patients being cared by their family. this is from Stat Canada.

With this type of numbers all of the 3.7M, including all on this message board should have some clout to ask for more palliative care for our loved ones and perhaps ourselves as time goes on. I am not asking for palliative care for seniors alone as there are many others who also need palliative care.

I wonder how the government and all the health care people will respond to this Stat and will it be looked after especially now that the Canadian Medical Association is asking for more funding for palliative care.

All for now, soap box just shifted and I am back to reality. Have to put clothes in dryer and get ready for a new day.

Take care and hugs to all.

Xenia

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Reply by NatR

03 Oct 2014, 4:27 PM

Xenia,

you are a gifted writer - you need to - sorry I mean - I would Love to see you write a Caregiver Blog!
i saw that same message on cbc news world and tweeted it out!
your story would reach a lot of people - your advocate voice would create interest!
i encourage you to think about writing a blog - you can do it anonymously or rephrase the content so you feel comfortable sharing your story

your real story would make an impact!
you are a heroine in my book anyway !

i also slept badly and lI know how awful you feel in the morning trying to get through the motions
sending you hugs and energy
hope you get a nap !!
natR

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Reply by Xenia

04 Oct 2014, 4:00 PM

Good Morning All and the World:

Woke up grumpy this a.m. why, I finally had a bit of sleep in, and heard John trying to get up. Why, John, I thought I would have breakfast and go back to bed replied, but it is only 6:25, so back to bed he went. I am frustrated, feeling in my mind, this is like having a baby, they want to get up and you start your day.

No, I told John to go back and lay down, let me get myself moving for a bit as I am usually up at the crack of dawn, however, last nite I did take 1/2 of my muscle relaxer and it really relaxed me to sleep in. All is forgiven, I trot around the kitchen getting oj, pull out the pot for oatmeal, get the H20 on and stumble around the kitchen waiting for it to boil, put out 1/2 banana get the H20 ready for my cup of instant Java, oatmeal cooking, pills out for John and I march wide awake into the bedroom, give John his pills, insulin and nebulizer. Back to the dining room (we have an open area condo) and John has his breakfast at 7:00 a.m., I pull out the cards after he has dined and play a game of solitaire which is our usual morning event. Play 2 games and won the last, is that skill or what? John watches while I play as he is quite blind with his macular degeneration and one blind eye. John goes back to bed and I proceed to my chair in the living room and settle in with a cup of Java and watch not really seeing the news and prepare for my day.

I have decided to go to the pool as I really need to get into the tub and daughter from Vancouver is taking me. Esther Williams watch out here comes Grandma.

Yesterday the aide didn't come so John has to wait until this afternoon to have his bath/shower while I have my 3 hours respite. The Palliative Care nurse came and stayed an hour. Told John he has to take more 1 mg. Hydromorphone as this will help him breath and if needed to take 2 at a time. John had bad chest and back pain (lung cancer and heart)however he is so stoic that he wont tell or say anything until the pain gets to 10 and he has suffered for an hour. Good thing for me he is not demanding but like the nurse says it is bad for the caregiver as one needs to decide what he needs, etc. So the day went. Had a great visit with her and John had a talk about wanting to go and his body not letting him. This helped me as I feel John thinks I can answer all his questions like the other day when he wanted to know why he can;t pass on and I had to explain to him that his body was not ready to let him go. He was somewhat content but he is so tired of the ups and downs.

I have learned to live with these ups and downs however some days are worse than others. My sister phoned from Regina yesterday and told me about her day and then said to me "How do you cope?" You never sound angry or depressed and this has gone on for over a year" My reply, I have good support from friends across Canada and I can share my inner most thoughts, anger, jealousy and all that takes place in my mind caring for John. This keeps me balanced when I am starting to tip over the cliff. I can yell in my messages and be heard by a caring person. She was amazed that this message board exists and yet I have told her many times. Sometimes I think she really doesn't listen so I don;t tell her my fears, etc as we are on different wave lengths even though we are close in other ways.

Another book I have written. Good think I am not using a pen as it would not be readable. My handwriting is atrocious so I am thankful for the computer.

All for now. I have to get my swim bag ready, check out the living room and put things away and head out into the rain into the pool. Take care and hugs to all.

Xenia

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Reply by NatR

04 Oct 2014, 5:02 PM

Hello Xenia and everyone!

dear Xenia,
as my mother would say - you have the patience of Job and a loving heart.
John is so lucky to have you
go out and just focus on you for awhile;)

sending go you hugs and energy;)
and Esther Williams should look out! You sound unstoppable;)
natR

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Reply by Xenia

06 Oct 2014, 7:59 PM

Greetings to all:

Taking a time out, perhaps to read or just veg. Up most of the night. John had another episode of spinning and not being able to sleep and other symptoms. Gave him his pills but he was restless so sat with him till he went to sleep and I went to the chesterfield and had some shut eye until 5:30. Gave him his breakfast and he was back to bed with more meds.

Care aide came and he only had strenght to have a sponge bath. She told me John was asking who that woman was, she thought he meant me, no that woman and he was adamant she was there, went to bed and slept till after lunch when I gave him a cup of chix broth and a bit of pudding and he is back in bed.

Have been reading a lot of the messages on the other Virtual Hospice blog and found so many items that fit me to a T. Anger, repessed, etc. etc. Feel that I really am not alone when I have these feelings. Also read the article on "Taking care of a sick loved one can take its toll" What a great article.

Had a good weekend, went to the pool with my daughter, nearly drowned..lol, they put on the wave and since I am short my daughter came over from her swimming lane as she only saw me head and my body bobbing up and down. Felt good to be in the H20 for an hour and then into the hot tub. Went shopping and my daughter hands me a purse, belonged to the care aide who was sitting with John for my 3 hour respite. Quickly phoned her and she knew we had taken it as it looks just like mine. She had to call into her boss as she usually clocks in on her Black Berry. All in all a good afternoon as the other daughter who lives in our city came over after work and we had dinner.

Life goes on slowly and as such I am learning to slow down a bit and so what if I leave the dishes in the sink longer than putting them into the dishwasher stat. Didn;t vaccum again, or wash the kitchen floor. So much of my routine has been changing and for the better.

Sun is out and it is a beautiful day and have the sliding door open to let in some good clean air and perhaps sit outside for a while.

Take care.

Xenia

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Reply by KathCull_admin

09 Dec 2014, 1:33 PM

Hello everyone,
A new member, Q posted to Consumed with fear late last night. Her mother is dying and she is from a small family. As her thread title says – she is consumed with fear and scared.

If you are able, could you take a few minutes to respond to Q?

Thank you
Katherine

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Reply by KathCull_admin

23 Mar 2015, 1:15 AM

Hello again everyone,
One of our members, Razz started the thread Help - I may lose my mind as the only caretaker for my 93 yr. old mother

If you are able, could I ask you to consider responding to her?

Katherine

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