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 

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

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

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