Discussion Forums

 
Reply by JennJilks
28 Apr 2014, 12:18 PM

This is NaPoWriMo, I wrote a poem, a curtal sonnet. It helps. Journalling helps, as does participating in this forum. You make mistakes, but you do the best you can at the time and let go the rest of the things you are unable to control.

Mother, take it easy


I nagged my mother about this kind of thing. 


Confronting her cancer, determined to be formal


Leaning heavily, making my dad some lunch. 


Standing at the counter, visibly shaking


She wanted to create the illusion of normal.


Dad perfectly capable of finding something to munch. 


 


She used to work Saturdays, when I was a child. 


He'd do the housecleaning, acting as caregiver. 


Susie Homemaker, shakingly she'd hunch. 


I told her to save her energy for disease reviled. 


    –But she would not listen. 
Report this post      
 
Reply by KathCull_admin
28 Apr 2014, 3:41 PM

Hi everyone,

Grammakim -  thinking about you as you and Chuck prepare for Tuesday. I know this may be a tough day for both of you.  But from what you have said about the experience others have had at the hospice I am hopeful that Chuck will be able to settle in and perhaps have some of his worry about the place alleviated. I also hope that you will be able to relax over the next couple of weeks and get your own health concerns settled.


Jenn - what creative talents you have! Thank you for sharing that great poem.


Xenia what a wonderful story about how people in your family care for each other. Have you been able to find another doctor for yourself?


Hanlie thank you for the reminder about the importance of memories and how they can bring comfort. It's good too that you have a faith that supports you.  Could you tell me more about your husband and father - a particlar memory that stands out about each of them? 

Katherine
Report this post      
 
12 May 2014, 12:23 AM

Hi grammakim04,

I just wanted to write a quick note to say that I am thinking of you.
Colleen 
Report this post      
 
Reply by KathCull_admin
15 May 2014, 7:59 PM

Hello everyone,
As you all know, caring for a family member at home can be very rewarding but also exhausting and lonely.  Mary M. started the thread New Here .  

Perhaps you would like to welcome Mary M. and let her know she's not alone.

Thinking of you grammakim04.

Katherine

 

Report this post      
 
Reply by grammakim04
16 May 2014, 4:39 AM

Hi, it's  been a crazy 2 weeks.  Chuck went to the hospice for the 2 weeks respite leave.  He was assigned an amazing dr which he took an amazing liking to.  This dr. immediately changed his medications, took him off the nitro spray and tripled his pain medications.

I have to tell you, Chuck's face looked 20 years younger with the increase in the pain medications.  He was so relaxed by the relief of the pain....what a difference.

The staff has been amazing to him and also to me.  They are constantly asking me how I am doing.

I had the social worker there sit down with me and ask me a ton of questions on how things were going at home.  I learned that Homecare had failed me in so many ways....they should have been checking up on me...watching out for burnout & exhaustion with me.
A social worker with Homecare should have been making monthly home visits with me to chat, checking me, seeing how things were going, offering councelling or other caregiver resources.

I told the Hospice social worker I only met the Homecare Social worker 2 x's in 2 years.

There were so many things that have gone wrong in our case that should not have had happened.

The good thing is, we are now getting the help we require.

Chuck stayed in the Hospice for the 2 weeks then he was moved over to the Palliative Unit of the Hospital (the hospice was located in the hospital).  With the disease he has, they are unable to determine a life expectancy, even though he can have an immediate heart attack or a piece of blockage can break off and head to the brain and he could die instantly, he doesn't meet the criteria to stay at the hospice.  I don't completely understand all of this.

They are going to do several assessments on him and have him transferred to a long care facility located in the town where I live.  Right now I am driving 45 mins each way to see him.

The medical staff has told me that with his current medical condition his care is beyond what I can do at home and the fact that he requires 24 hr care.  His doctor was shocked that I was still caring for him at home with all the problems that he has.  It certainly explains why I am so exhausted and burnt out.

He is comfortable and accepting of where he is.  His doctor has been excellent in explaining everything to him and that he can no longer be cared for at home.

I have to be honest with you...it is a huge relief to have someone else to be in charge of the medical side of things....but it is so hard not having Chuck at home....in fact it's horrible.

I know it's another step in this journey I'm on, but I hate it.

Kim
Report this post      
 
Reply by KathCull_admin
28 May 2014, 4:14 AM

Hi Kim
How wonderful that Chuck is more comfortable and that someone is caring for you in the midst of all this too. 

Has there been any news of when he might be transferred. Driving that distance every day can take its toll physically and financially. 

I know you will be busy - so good to hear from you when you are able.
Take care Kim
Katherine 
Report this post      
 
Reply by KathCull_admin
19 Jun 2014, 2:08 AM

Hi Kim
Just to let you know you've been on my mind the last few days.  
Take care
Katherine 
Report this post      
 
Reply by grammakim04
17 Aug 2014, 4:40 PM

Sorry I haven't replied in quite awhile.  Life is just so busy, tiring and stressful.
Chuck spent 6 weeks in the hospital and in the end came back home on June 10.
He flat out refused to be transferred to a Nursing Home even though the dr. stated he qualified for long term care.  The one thing that did come out of his stay there was that medical staff was able to get a better grip on his pain control.

He is on such a higher dose of morphine & fentenyl he longer feels the chest or head pains like before.

Unfortunately, I am right back where I was before...but his health continues to decline.  He is slowly losing the use of his legs.  A month ago I bought his a scooter and it has brought back alot of freedom for him.

We had our son & his family come & stay with us for 2 week and I took 5 days during their visit to go see my family back in Manitoba.  It was so difficult to see my Dad as he is in a nursing home with Alzheimer/Parkinson Disease.  Also, I visited with my gramma who was 97.  The day before I returned home, my gramma died...I was so glad I had the time with her.  I have to say though, I was just emotional exhausted when I returned home...it was so hard seeing my Dad, how hard it is with Mom and knowing I can't be there to help her.

Chuck is just adament he wants to stay home....no nursing home.  We still have the Day Support Program twice a week but he is becoming so fatigued that many times it ends up only once a week if that.  We have talked that if he comes completely bedridden, at that time he will agree to a Nursing Home.  It is so stressful and exhausting for me just watching his health declinging.

As caregivers, this is what we do.
Report this post      
 
Reply by Xenia
17 Aug 2014, 5:28 PM

Dear Kim:

All I can say is I am supporting you through this support group.  My heart knows what you are feeling as we all have had the experieince you just had.

Taking care of a loved one is serious and heavy enough then having family that is ill and in the age group where they can pass awy is another burden.  I go through this with my husband and brother.  Both have COPD and cancer and other things.  My brother lives with my daughter and their family of one son.  She cares for him as if he was her father. She has a burden but they feel they cannot put him in a care home as he is a functioning schizophreniac and will run from the hospital until the time he is very ill.  He does well and is no burden to anyone.  I feel for Gayle to-day as our grandson, their son, bought a town house in Burnaby and moved out yesterday.  Stephen, my brother is heart broken.  He stated it is alredy different without Tyler.  He has lived with him for 8 years and talked , shared info and Stephen is a painter and he painted many pictures for him.

With this on on heads, to-day I thought John had a stroke as he lay in bed for 3 extra hours, still, no movement and breathing that was not right.  So I went and touched his hand gently and he opened his eyes, I gave him his meds and he went back to sleep for a little while.  Got up and I gave him his COPD treatment and rest of his meds and a small breakfast.  Made up his bed, put in laundry and took a time out.

Daughter called and said they would bring a chicken for dinner. Good, so I bake some cupcakes, will fill them with some whipped cream, fresh peaches and whatever fruit we have from the market.  Will make some rice pilaff as it takes a few minutes (that is if I had instant rice - which I don't) but will use uncle bens and that is dinner with a salad. 
Chilliwack corn is out so perhaps one or two cobs if they would like them,

With that I am finished for the day.  Baked early so it is not so hot, chicken from Costco, no baking, whoppee, I can relax.  Oh yeah showered and did my naturally curly hair do, put in some curl release and wait for it to dry and take out some of tight curls that make me look like a sheep.  lol.

Take care hugs and prayers to all.

Xenia
 
Report this post      


Our Partners
Asked and Answered
Asked and Answered

Find out what Canadians
are asking

Ask a Professional
Ask a Professional

Our team of experts answers
your questions about
life-threatening illness and loss.

Just want to talk?
Just want to talk?

Join the Discussion
Forums

Books, Links, and More
Books, Links, and More

Recommended by our team

Programs and Services
Programs and Services

Find local, regional,
and national services