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Reply by grammakim04
23 Apr 2014, 7:25 PM

On Monday, Chuck stayed at the day support program for 1 1/2 hrs.  I managed to get a bit of the housework done.

Today he is having alot of problems once again with chest pain.  I scares me at times but I give him the nitro shots and the morphine to try and calm him down and it usually does and then he sleeps for a couple of hours.

Thank you for your kind comments on my craft work Tracie, I truly love doing it.

Kim
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Reply by marstin
23 Apr 2014, 11:48 PM

Hi Kim,

I think that caring for our loved ones at home has got to be one of the toughest things to do. We find something deep in ourselves that helps us cope with it but not without a lot of fear and uncertainty. We find the things that work and what doesn't by trial and error. Nothing ever prepares us for this kind of reality. I hope that Chuck is feeling a little bit better after his medication. It's so difficult to watch the struggle.

What your craft work shows is how deeply you think about what it is that you are impelled to make. They show the love for your family, and your commitment to others that are in need. They seem to come alive and paint a picture of what is needed for any particular situation. That in creating them, you can drift away from reality for a short time is so wonderful.

Hanlie,

How long has it been since your dad passed away? You mentioned also that you had to take care of your husband on top of looking after 3 kids and working full time. Was your husband ill also? It truly is difficult to have 2 family members ill at the same time and feeling so torn between them. After losing my husband and my mom back to back, I find that now, after a year and a half, I am finally starting to feel a little bit more like I'm finding a way to start living again. It's a tough road.

Hugs,
Tracie
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24 Apr 2014, 1:03 AM

Hi Hanlie,

Welcome to our Virtual Hospice community. So glad that you found us and that you've come to offer support to those who have not yet travelled the path you've already had to take. We look forward to getting to know you.

Colleen 
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Reply by hanlie
24 Apr 2014, 12:57 PM

 


Hi Tracy and Colleen thanks for your reply, my dad passed away in 2007 and my husband in 2009, they were two important persons in my life and I will always remember them. Yes I do have lovely memories of both. I am living in South africa our services is very different from what you have in Canada. In a way we just go on and survive at the end. I must admit that I am a born again christian and I know that Jesus has risen and He is alive, He is my source of hope for the future.


 

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Reply by grammakim04
27 Apr 2014, 6:35 AM

Hi,
Had the Hospice discussion with Chuck, didn't go as well as I had hoped.
He said he would only go if he was completely bed ridden or had to use a catheter. 

On Friday morning I had a dr's appt and found out my blood pressure is thru the roof and my dr told me that he is quite worried on how exhausted I am.  I told him about my discussions with Chuck and he told me that he would take care of that.

About an hour after I arrived home, recd a phone call from the Palliative Coordinator informing me that Chuck will be going for a "respite leave" to a hospice for 2 weeks.  If I needed a longer leave, I just had to let them know.
She said to me that they didn't realize how exhausted and sick I was until my dr. phoned them.  I became very upset with her because in the last 2 months I had talked to her several times explaining how burnt out I was.  Even when they came to the house to talk to Chuck, I told them then out tired I was that I was even having problems taking care of myself.

She made no comment about it.

Now to make it to Tues with Chuck.  He is being mean with some of his remarks right now, which hurts.  I think he is nervous about going to the hospice, but I keep telling myself I have to do this and just leave the room when the comments start.

Hopefully everything goes well

Kim
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Reply by marstin
27 Apr 2014, 7:33 AM

Hi Kim,

How difficult this all is for you. It appears that Chuck doesn't see what is happening to you or is just plain scared about not having you there with him. Unfortunately, if you don't have a break, he may not have you there either because you'll get sick. What I don't understand is how this has gone on this long. The nurses we had asked often about whether I was okay, was I sleeping, eating etc. I think they are trained to watch for this as it can easily happen to caregivers. I am so sorry they weren't hearing you.

I know that I was encouraged by a social worker at the hospital to write in a complaint if I felt that things weren't done in a caring way. I would suggest that when this is all over and you are able to do something like that, to send an email and explain what happened. This is so wrong. I think there is a lot of burn out in the medical system and as a result, patients and their families suffer.

Thank goodness that they are finally taking the steps necessary to allow you time to rest. You so badly need it. I'm sure that Chuck is nervous about going in but just remember that you count too! He will be well cared for and you will be allowed to recharge your batteries. It's best for both of you and you will be able to spend some quality time with him and still do some self care. You deserve this and possibly once he's in there he will calm down a bit and see that it was necessary.

Hugs,
Tracie
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Reply by JennJilks
27 Apr 2014, 12:55 PM

Kim,
I cared for my late mother at home. My late father we had to place in care.
There comes a point when YOU must decide what to do that is best for YOU.
In the airplane they tell parents to put on the oxygen mask first.
You will be in no position to care for anyone if you are sick, and statistics show that many caregivers become ill when doing full-time care.

My mother was determined to die at home, at great cost to me. She did not understand the impact of the situation.
If you get to the point where you cannot cope, call 911, have him taken to the hospital. The hospital will help you get him to hospice.
I am relatively healthy, and dealing with my husband's catheter after his prostate surgery sent my blood pressure sky-high. I'd never had to manage a catheter, etc. I began having anxiety attacks. 
You must only decide for yourself. You can tell your husband "I simply cannot cope anymore." and repeat it. Full stop. 
This is my free advice! I am a fully-trained hospice volunteer, with several dozen clients whom I have helped. When it comes to family members, it is such an emotional issue, that it is difficult to bear.
 
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Reply by Xenia
27 Apr 2014, 4:07 PM

Good Morning Kim and All:


Just caught up on all the messages and agree that caring for a loved one is difficult and as caregivers we get caught up in caring for everyone and losing ourselves.

You speak of your blood pressure going up, this happened to me as well, thought I was having a panic attack at night, dr. checked and put me on two small mgs of blood pressure meds.  Made an appointment with the heart specialist, then my gp had a stroke and now I am in limbo.  With all that my siatic nerve is giving me a lot of trouble, thankfully I have a great physio and now am going once a week for 1/2 hour instead of the whole hour.  Found it great but needed my respite care for finding a doctor, using the walk in clinic for now. 

John is having more pain and is asking for his meds for his breakthrough pain which goes up to 9 on the scale of 10.  He is very stoic so his pain must be getting to him as he doesn;t say much.  Welcomes the caregivers who bathe him and of course the community nurses he enjoys their visits and caring manner.

Trouble shared is trouble halved I am told, so I am sharing that my brother who is 67 years of age has been diagnosed with a 2 cm. lung cancer, John has lunc cancer as well. Our daughter is caring for him as he has been living with them for 5 years.  He is a schizophreniac...non medicated and is so very sweet, he is my baby brother from a family of 14.  9 brothers 3 sisters and two baby sisters who passed away shortly after birth.  It seems strange that Gayle, our daughter is looking after him and he is getting such good care from his Heart and Respirologist specialists.  He is asked if Gayle is his daughter, no , she's my favourite niece.  Her family, my son in law and grandson look after him and he is no trouble.  The whole neighbourhood where they live have grown to love him as he used to mow their lawns etc, just because he like to do work..no pay, just to do it.

We are fortunate that we have the strength to be able to carry on with my husband on palliative care and my brother who will certainly be on palliatieve care soon.  He will not go to hospital as he has a fear of them so we we are arranging for care to come in as his caregivers, daughter and son in law work.  I am his committeship along with my son in law.  For those who do not know what committeship is...it means we have a court order to look after all his affairs as with his illness he could not sign a power of attorney, etc.   The drs. are amazed at the care he gets, his attitude in life and even dying.  So we carry on, John, my husband who is very ill and my brother who also is very ill.  We put our worries to our higher power and carry on.

So Kim, when I read your messages I share your burdens along with all who share their burdens and help all of us understand that we are not alone and somewhere there are others who are in the same dilema we are.

Thank you all for your messages and giving me the strength to carry on each day.

Xenia

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Reply by grammakim04
27 Apr 2014, 5:50 PM

Thank you all for your encouraging comments.  All of us have gone thru so much with our loved ones.

Nice to hear from you JennJilks.
Today Chuck is trying to do things around the house to show that he is "not sick".  I've asked him to slow down because I know things are going to be disasterous later  today.  He just responded  by leaving him alone and that he can do whatever he wants.  I just walked away.  I really think he is stressing out about going to the Hospice.

So..it's going to be another long night with morphine & nitro spray.  Makes it so hard.

Kim
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Reply by JennJilks
28 Apr 2014, 11:54 AM

Ah, Kim. I nagged my late mother about this kind of thing. She was standing at the counter, visibly shaking, determined to be 'normal', building my dad a sandwich. He was perfectly capable of doing it. She used to work Saturdays when I was a kid. He'd do the housecleaning, take care of us, make us lunch.
Then, we went for a visit, she insisted on cooking. 
I told her to save her energy for other things. But she would not listen.
I totally understand.
Can you contact your church outreach people, asking for help? People can be so busy, and unthinking. My heart goes out to you. 
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