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How do I support the caregiver (my dad)? 
Started by 2forSue
23 Feb 2015, 2:18 AM

Hi all. I live in Ottawa with my husband and two teens; we've been here for 15 years now. My parents live in Manitoba (where we moved from).

Several years ago, my mom (78) was diagnosed with cirrhosis of the liver (not from alcohol, but likely from medications she's been on in her life). She needs to take medication called "Lactulose" or the toxins built up and cloud her brain and affect her ability to walk, feed herself and concentrate. My dad (78) is her primary caregiver. My mom receives homecare twice/day and a bath 2x/week. My dad is supposed to receive respite 2x/week for 3 hours each time; he's lucky if they give him 2 hours at a time...if they come at all. My mom does not realize she is dying from this and "can't wait to shake it". We're afraid to tell her she won't get better in case she gives up. A part of me already feels as though she is giving up now. My dad tells me how exhausted he is, how he feels he is entering a depression and how they feel their friends are calling less and less. Could be true, I'm not sure. They do have some dear friends who help them from time to time...they are absolute angels!!

My mom does not want to go into a home (dad doesn't want her to either).  I suggest he put her into the hospital for a few days so he can get some rest and do a few things he enjoys. The problem is, he doesn't trust anyone at the hospital and is convinced they will kill her (not on purpose, of course), so he would be there all day anyways! He is a reasonable man, but when it comes to mom, he'd rather die before leaving her in the longterm care of strangers. I don't know what to tell him anymore or how I can be helpful.

I'm looking into private care for them for a few hours a week. I have no idea what the cost of this would be. If it's reasonable we may be prepared to help cover part of the cost. My parents are not rich, but they are not poor either and I think with a bit of coaxing, he may agree that it's a good option. Meals on Wheels is another option I'd be willing to chip in for, but I think it's the respite he needs the most. They are driving eachother crazy right now.

Thank you for any advice/experiences you have to share with me.

Suzie 

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Reply by KathCull_admin
23 Feb 2015, 4:05 AM

Hi Suzie


Welcome to our community – the members here have a wealth of experience and understanding.  It must be a worry for you knowing that your dad is getting exhausted.  I would imagine your mother might find it hard to need so much support too. The thread Report on stress of family caregivers will not change your circumstances, but perhaps reading it may bring some comfort – knowing that others understand.  


I am not sure if you have looked at the Programs and Services area of the Virtual Hospice – I notice there is a link to Options for Seniors: Where Do I Start? in Manitoba, which you may find helpful.


Do your parents have a trusted healthcare provider? Perhaps he/she could offer some suggestions as to how to proceed? Is there a way you could be part of that conversation – perhaps by telephone?


It’s not easy providing long distance support – how do you manage that stress?


Katherine

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Reply by NatR
23 Feb 2015, 4:07 AM

Hi Suzie,

welcome to the  Forum.
you paint a great picture of the devotion between your Dad and Mom...it must be difficult for you to be so far away - not able to check on them easily.

i don't have any idea what homecare is available to your parents in manitoba but here in Ontario I believe it is the family doctor who recommends community care ( CCAC) Community Care Access Centre - where they will evaluate the needs of support at home and the level of care can be changed up or down as needed, as evaluated by the care coordinator.

i think it is exactly what you need...before your dad gets exhausted,  I understand how he feels about letting your mom out of his sight.

 Your other idea about Meals on Wheels is terrific. It may mean a whoke lot to know a hot nutritious meal comes to the door!  From your distance - it will also ease your mind knowing there are choices for food...whether or not it is appreciated every single delivery.

if your parents have the means to afford help - there are nursing agencies - that will rent you a PSW ( personal support worker) or whatever equivalent of homemaker help they have...and just to have a few hours a week makes a huge difference. It will also perhaps enable your dad to get out of the house for a change of scene, go shopping etc...and not worry.
the other thing is - knowing the staff that come to the home - will let your dad feel safer with familiar people he can trust.  That's a big thing,

Good luck, and I am sure others will have ideas to offer.
let us know how things go.  I am in northern Ontario - freezing in the deep chill that is hanging around:)
best wishes,
NatR  
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Reply by SherriT
23 Feb 2015, 4:59 AM

Hi Suzie,

i also live in Ottawa and my parents were living in Wpg.  My Mom passed away just over a year ago from cancer.  For several years, I was a long distance caregiver.  My dad is unable to be a caregiver either physically or emotionally as my mom did everything for him.  It was a very stressful time of trying to decide when to fly there.  my mom wasn't on the home care program until near the end, and then was on the palliative program.  She had a nurse coming daily and a PSW a few times a day for med admin and personal care help.   Then, in the end she got admitted to St. Boniface hospital palliative care , where she passed away.  I don't know if I have any real suggestions but I certainly can relate to you.  I know there are many agencies to privately hire from.  Have you spoken to their care coordinator to make sure they are getting all they can?  Would the 2 of them consider moving into an assisted living home ( not a nursing home or as they call them in Wpg, personal care home). They do cost more than a nursing home but they are much cheaper than the retirement homes here in Ottawa.  They would have their meals done for them as well as housekeeping and 24 hour supervision. They can get their home care there also.   Then maybe your dad could get breaks by going to an activity or maybe she would go to some activities.

Otherwise, I agree with looking at private care in the home, but it would add up quickly.  But even if you could get a couple of blocks of hours per week.

my mom had a volunteer from the Manitoba hospice program and found this really helpful.  I referred her from here and they were really good. 

I dont  know if the personal care homes in Manitobe offer short stay respite as they do here.  I work as a care coordinator with the CCAC (home care) in Ottawa and we offer that here so the caregiver can out the person in a nursing home for a week or 2 to get a break.  Their care coordinator there would know that.   

Anyway i uNderstank your stress!  Last Oct, we moved my dad to a retirement home here in Barrhaven as he wasn't coping on his own so I have a different kind of stress now!

if I can be of any further help, let me know.

Sherri 
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Reply by NatR
23 Feb 2015, 5:08 AM

Sherri!
so good to see you sharing your knowledge and support, thank you
 good to know you have your dad close by now - but I know it's always hard to support a loved one - even close to you.

stay warm, and thanks again.
best wishes
NatR 
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Reply by oldbat
23 Feb 2015, 5:35 AM

Hi Suzie, and welcome.  You've come to the right place.  We are a community of care-givers who offer support and caring along with some always-helpful advice.

I've found that Meals on Wheels, or something similar, does help.  For the something similar you should get on-line and search for "cooked meals, delivered to your home", or something similar.  I know that, in Toronto where I live, the Heart & Stroke Foundation delivers what sounds like delicious meals.  There are also various "gourmet" cooks; around here that offer the same service.    I'm sure that there must be similar services in Manitoba. 

Just Googled for you, found some around the Winnipeg area and one in different areas of Manitoba:

Food for Thought - Winnipeg

Supper Central - Winnipeg

Ready Maid Meals - several places in Manitoba

Prairie Ink Restaurant - Winnipeg

I also found something interesting in the latest government report on care-giving:  apparently several provinces, including Manitoba fund indepently-paid home-care packages.  Here's the relevant section:

Note: Publicly funded self-managed home care programs are available in British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Quebec, New Brunswick, Nova Scotia, Prince Edward Island, and Newfoundland and Labrador, as well as through the Veterans Independence Program.

This is probably worth checking out.  Apparently the money goes into a private bank account and is withdrawn by the care-giver and allocated to the services needed.  Have no idea how much is money is provided, probably not much, but it is a good idea.

Lastly take good care of yourself, Susie.  It is all too easy to get burned out - for yourself and your Dad.  I found this out the hard way!

All the best and please let  us know how you're doing,

oldbat

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Reply by Brayden
23 Feb 2015, 6:59 AM

Dear Suzie,


Thanks for coming onto this site. I can tell you as a volunteer companion with Manitoba Hospice, that you can request a visiting companion for your mother so that your father gets some respite. With the consent of your father, you could call Ian at 204-889-8525 ext. 226. The more resource contacts your parents get might help them understand their predicament and make better choices. We all understand how difficult it is for you to manage all the details from a distance. You probably too just get the information that your parents want to tell you and keep you quessing. Please keep posting and we are here for you. Keep asking.


We care,


Brayden

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Reply by 2forSue
06 Mar 2015, 10:21 PM

Thank you all so very much for your feedback, suggestions and support! Sorry for being away for so long and to only be getting back to you now.


Sherri, which retirement home is your dad in? My daughter works at Prince of Wales in Barrhaven.


Brayden, I can assure you, my dad fills me in on every last detail of what is going on back home including all of the misery he and my mom are living.  I'm glad he feels comfortable enough to tell me what he's feeling; it's good for him to get it out. I can handle it and he knows that.


A retirement or assisted living home in Portage has a very long wait.  My brother suggested they get their names into a couple of them over a year ago. If a spot opens up and they're not ready, they can go back to the bottom of the list. Easy, right? Well, my dad never did it. I'm sure it's hard to admit when it's time to move on...especially before you're ready.


I've done a ton of research for resources in Manitoba for them. I found the Victorian Order of Nurses website which provides private nursing, caregiver support, respite care...and many other things. I've visited the Senior's Resource Network for Manitoba, which is full of agencies and numbers to contact. There is a lot out there, it's just a matter of digging through it all to see what fits your needs...that's time consuming, of course.


Over the last few weeks, my brother (from New Orleans), my sister (from Belgium) and I have decided that we will come together in Portage (Manitoba) for two weeks at the end of May. My dad (and mom) is thrilled and can't wait to have us all together at home. Thankfully, my brother and sister are incredible people and will do whatever they have to, to help out. They are incredibly sensitive to the needs of my parents and are very aware of the fragility of the situation. So am I. We will be very gentle in any approach we have with them. I feel very blessed to have the family I have!


Again, thank you. It's nice to know I'm not alone in my concern and feelings of helplessness.


Suzie

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Reply by NatR
06 Mar 2015, 11:30 PM

Best wishes Suzie

nice to hear that you found resources and that you have your siblings support.  It's good you will all be together - hope that things will fall into place for your parents.
sending you a hug,
natR  👍💕
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Reply by SherriT
07 Mar 2015, 3:30 AM

Oh my gosh Suzie- that is where my Dad lives-on the assisted living floor!  What does your daughter do there?
Sherri 
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