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Tips for Long Distance Care Giving/Coordinating? 
Started by CdnAtHeart
28 Nov 2016, 7:52 PM
Hello!  I'm new to this in many ways.  Normally I'm on the other side of things, as it's my job (literally) to give advice and care to others.  But I'm feeling rather overwhelmed as I try to coordinate care for my mom (in Alberta) while living thousands of miles from her in the U.S.A.  She is 98. and suffering from congestive heart failure and arthritis.  We are a scattered family with a history of disfunction and difficult relations.  My mom has always been narcisistic in the extreme, but we've managed to cope until now.  She would dearly like me to be there 24/7 for her now that she is facing the late stages of congestive heart failure.  She has an intellectual grasp of why this is not be possible, but a strong belief that a) things should really be different and b) I will "see the light" and be at her bedside shortly.  This is not possible for me to do on any level - financially, emotionally or physically.  But that doesn't stop me from feeling guilty about not being there for her!  She has been living comfortable for many years in an assisted living facility, with lots of additional home care support through Alberta's excellent Care West program.  But she has recently been yo-yoing back and forth between being able to be in her apartment and having to spend more and more time in respite care at their facility.  Her care giving team wants her to go into long term care but she adamantly refuses.  As she is 100% mentally competent, we must defer to her choices.  Her CHF has worsened, and she went back into respite care yesterday.  In order to communicate with her, her care team, and my brothers I must negotiate 3 different time zones, one brother who can't remember from day to day what's going on, and another who is empathetic but travels frequently and is often unable to be reached.  This leaves me to make decissions regarding mom's care on my own and often "blind", as I can't be there to physically see what's happening to her, what treatment options/environments look like, how she's being affected by the decissions I'm making on her behalf, etc.  Does anyone have tips to share on how best to manage an end-of-life situation long distance?  And how to cope with feeling so many mixed emotions?  I'm normally pretty good at self care but all I want to do since finding out mom was back in respite care is just go to sleep until it's all over.  I recognize this as depression; it's something I've struggled with before, and I've always found the resources to climb out of that hole until now.  Now I feel like nothing really matters because nothing I do will be enough for anyone in the end.  Maybe venting here will help me.    
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Reply by KathCull_admin
29 Nov 2016, 3:23 AM
Dear CdnAtHeart
Welcome to the community. SherriT started a thread a couple of years ago, Long Distance Caregiving Challenges.  It hasn't been active recently but I thought you might find it helpful to read the posts.  

You are carrying a lot on your shoulders - is there someone in Alberta who could perhaps be a 'go between' - someone who could spend time with your mother and keep you up to date?

Are there resources where you live - people or programs that could help you? Do you have friends/family who could help you find those resources. 

I am glad you found us and 'vented' - we're open 24/7.

Until we talk again.
Katherine 
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Reply by AdoptedSon
29 Nov 2016, 4:36 AM
Hi CdnAtHeart

You certainly do have your hands full, and as much as I would love to give you some advice, long distance caring is beyond me. I was the "GateKeeper" for my Mom, but I was there 24/7 though it sure felt like the days were longer than a mere 24hrs.

You speak of your Mom's care giving team, and I wonder if it is possible, with todays technology, if you coukld maybe arrange for regular video conferences with them and even perhaps with your Mom? Skype seems a possible means so that in some sense you could be there.

Maybe even arrange some sort of schedule to talk with them, face to face (sort of) that could help you better gauge the siuation,  Even maybe arrange for a regular chat with your Mom so at least you both can see each other. 

At the least it might help you to see how things are.

I do know that "venting" helps, either here or with a close friend. I know it helped get me through all the government BS I had to contend with here in BC.

I guess that the notion of just wanting to "sleep through it" is universal, whether you are right there or miles away. 

Wish I could be of more help, but you just have to do what you can, with what you have, whether in the thick of it, or hampered by distance. It is one more obstacle to contend with, but really, you can only do what you can.

Vent away all you want here, we all have done it, still do too.

Ian 
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Reply by CdnAtHeart
29 Nov 2016, 2:34 PM
Hi Katherine & Ian:

Thank you both for your kind responses and thoughtful suggestions.  You encouraged me to vent so here goes (be careful what you wish for!)...

Ian, I had hoped to set my mom up on Skype but she does not have any interest in it (even after I showed her how it works by Skyping with my brother while I was visiting there).  She doesn't have an internet connection in her apartment and, surprisingly, her care facility has no internet service either!  When I visit her in her assisted living facility I have to go and sit in the lobby to access their office internet signal.  Not very convenient or private.  Neither does she have her own cell phone so, when she's at Care West in respite care, I have to call the duty nurse and they take her the communal cell phone.  She has difficulty hearing and feels as if she can't speak long (although they will let her stay on the phone as long as she likes), so our daily communication is fraught with all kinds of difficulties both real and imagined.  I can usually speak with the charge nurse and/or mom's case manager and they are always helpful.  I feel I can trust her caregivers to provide a reasonable level of care, and I've known most of them for years now so it's very reassuring to have that personal connection with many of the folks who are tasked with caring for my mom.

My dad passed in 2000 and, a year later, my mom decided (at my brother's urging) to sell the family home and move to Calgary to live with him and his family.  That lasted for just over 2 years - no one was happy.  I got called in to mediate and help find a mutually acceptable solution for everyone.  We found my mom a lovely apartment where she could live independently with some support in a good assisted living facility 5 minutes away from my brother's place.  But my mother never made any close friends, or had any interest in the community.  In fact, she disparaged Calgary, and every one around her at every opportunity.  She chose to avoid most social activities, preferring to stay in her apartment and read or watch T.V.  She doesn't particularly care about her grandchildren or great grandchildren, and has never made an effort to form a relationship with them (or anyone else).  She has managed to develop one very useful social skill in that she is able to present a charming, sweet avatar to people she has to interact with in the world.  So they see a sweet little old lady who has inexplicably been "abandoned" by her cruel children.

Katherine, I read SherriT's thread - harrowing, inspiring, moving.  Still crying.  But thanks for sending that link.  So much of what was said there resonated with me.  When you are in "the thick of it" (as Ian so aptly described) you feel as if you are isolated and the only person on the planet going through what you're going through.  No one else's family could possibly be as weird and disfunctional as mine; no one else has ever had to face these challenges; no one could possibly understand what I'm going through.  But I see that others are facing similar challenges and finding ways to overcome or, at least, muddle through with as much grace as they can.  And I guess that's all we can try to do.  I've never been one for public forums, blogs, or sites like this.  But I'm beginning to appreciate the helpful role they may play.

My husband and I relocated here from New York City to Largo, Florida, just over a year ago.  We've been struggling to get ourselves established, and have no support network here.  Our family members are either in Canada or abroad.  I have no close friends.  I had a great therapist in NYC but she has retired, and the thought of having to tell my story all over again to someone else seems too exhausting!  Although you wouldn't guess that from this excrutiatingly long post.  But wait, there's more... 

My husband was able to secure a good job very quickly, but I am struggling to start my own practice here while maintaining contact with my established clients via skype and phone.  I just seem to gain a bit of momentum, then I have to drop everything to head to Alberta and deal with another one of my mom's health crisies. 

My husband doesn't seem able to offer anything beyond superficial platitudes (every thing will be o.k., you'll be alright, etc.).  He struggles with empathy and chooses, instead, to just check out in the hope the problem will have disapeared by the time he choses to engage again.  It's really like a form of narcolepsy - he just falls asleep, or stares vacantly into space and doesn't seem capable of responding.  So I'm pretty isolated here.  I don't have the time or energy to teach him how to be a human being right now.  But realizing I can't depend on him for any kind of support has been an unpleasant discovery.

I find it interesting, for lack of a better word, that neither of my brothers seems to feel a need to visit or even speak with my mother.  They are both filled with anger and resentment (for good reason), and feel they've put in their time, she's made the choices she's made, and they feel no responsibility to do more than they've already done for her.  And, most surprising to me, they seem to have been able to make peace with that.  I seem to be the only one of us racked with guilt. 

My middle brother is struggling with short term memory loss so, even though he insists he will be there for me if I need someone to commiserate with, it's difficult as he can't remember from day to day (or even hour to hour) what's been happening.  So it's like being in the movie Ground Hog Day with him.  My eldest brother has always coped by simply getting as far away as he possible could then claiming he wishes he could be there but...  Again, he offers me his support but he's physically difficult to connect with as he's either travelling, or is someplace with no phone/internet service, etc.  At least neither of them is arguing with my decissions about my mom's care, etc.  And they've both expressed how grateful they are that I'm taking the lead and doing what I'm doing.  The three of us share a rather dark, twisted, sense of humor and that helps a lot.

My eldest brother shared some words of wisdom with me yesterday as I was expressing my feelings of being torn as to whether or not to drop everything and just move in with my mom for the duration or continue to do what I can from afar and try to keep some sort of life/marriage intact.  He said, "Even if you did move in with mom and sat by her bedside and held her hand 24/7 for the next year, it still wouldn't be enough for her; she'd say, 'Why didn't you come here sooner?  If only you'd done this before this never would have happened to me.' "  And he's right!  That feeling of never doing enough that I have isn't delusional.  It's true - it would never be enough.  So I have to find a way to feel as if I'm doing the best I can and having that be enough for me. 

Even typing all of this makes me feel selfish and unworthy and like I'm burdening anyone who reads this.  I know that's not being fair or kind to myself, but it's that horribly little voice that worms it's way into every inner monologue - "You're a bad daughter, a bad child, a bad person and if you only did more, tried harder, thought less of yourself, everyone else's life would be better (p.s. yours just doesn't matter)' ". 

Ugh!  I'm sick of myself right now, and you must be too.  Thanks for slogging through my huge pile of icky emotional baggage :)  I don't expect anyone to "fix" this for me, but it does help to get it out of my head/body and into the universe.  
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Reply by Nouce
29 Nov 2016, 3:54 PM

Greetings, Canadian at Heart,


I share this identity; I too live in the U.S. Certainly there are many differences in how caregiving is handled across the borders. But I, caregiving for loved ones here in the US, have found the emotional and friendship support of CVH to be BEYOND valuable.


My caregiving has all been done at close hand--first for each of my parents, and now for my husband. But as I take care of him, I have come to know other friends who need to do their caregiving at long distance. It's nerve-wracking and often guilt-producing. So first, just breathe and say to yourself that you are doing the very best that you can. Because you are!


It sounds like your mother and in some ways your siblings make it especially hard. If you have the resources, it would be worth seeing if there is a gerontolgy social worker organization near your mother, whom you could engage to help with the steps needed.


Another thing my brother and sister and I did (with our parents) was schedule a regular conference call among us to update regarding what was happening.


I am so sorry that you have to face this difficulty. Know that you have friends in CVH!


Nouce


 


 

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Reply by CdnAtHeart
29 Nov 2016, 10:26 PM
Thank you, Nouce.

I am grateful for the support, and the caring nature of the replies I've already received here.  Frankly, I wasn't expecting much as my experience with on-line interactions has not been very positive in the past.  But the level of genuine care and compasion on this site is truly heartening!

I was just informed that my mom met with her care team this afternoon and consented to start the process to enter into long term care.  On one hand I'm releived on many fronts - that she came to this decision on her own, that she will be able to receive 24/7 care and won't be alone, that I won't have to worry every time she doesn't answer the phone right away, etc., etc.  But now I have a whole new list of concerns flooding my mind - how to allay her fears and concerns about giving up her independence, how to manage closing up her apartment, how to ensure she's being cared for properly when I can't be there to check up in person on a regular/frequent basis, where to stay when I visit, and on and on.  I'm trying to take your advice, Nouce, and remember to breathe and remind myself I'm doing the best I can.  I also realize that I will be getting lots of info from her transition coordinator over the next few days that will answer a lot of my questions.

I expect I will have to deal with this on my own.  My eldest brother announced he has already booked his annual Christmas vacation and won't be available to help.  Middle brother's own health concerns make his involvement impossible.  Husband has decided to imitate an ostrich for the foreseable future.  I'm hoping the Care West staff will be able to point me towards resources in Calgary that can help me with moving furniture, clearing out the apartment, and all that goes with that (like finding reliable long distance movers that go from Calgary to Florida and handle small moves).

I'm trying hard not to feel bitter about the lack of support from my family, as I don't want negative feelings to color my intentions, which are to make this transition as positive and easy as possible for my mother.  It's not like this is new behavior from any of them, so the more fool I to expect anything different.  I guess it's time for me to cut everyone (including myself) some slack, and realize we are all doing the best we are capable of doing.  Maybe I will find help from unexpected places (like CVH!), and as yet undiscovered sources.  
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Reply by AdoptedSon
29 Nov 2016, 11:30 PM
Hi CdnAtHeart

Don't sweat the reply, in context it was a wee one, as we all have lots to vent about, and some say writing it out is theraputic (spelling?) I learned early on that the people here do listen and all have some similiar stories to relate, or issue that strikes a familiar chord.

I would suggest that maybe you get in touch with the provincial social services department in Alberta, for guidence and at least some viable alternatives. From what I hear, Alberta is a lot more responsive than the BC Government, and its a good starting point. You can find some good info on their website, I think.

Also try to check into mobile internet for your Mom and for her care team, so you can visually commincate on a regular basis. Rogers, Teleus, Shaw all havbe it and even if your Mom isn't all that interested, once she has it, she might come to enjoy it. I know my Mom didn't like the computer until we showed her the movies she could enjoy, and after a bit, she was quite engaged with her new toys, including the kindle we got her. She resisted at first because she didn't think she coulkd figure it out or remember how to use it, but once she did, well her kindle rarely was off.

I think all of us who have had to deal with the care of a loved one, has that voice inside, saying we shoulkd be doing more, but honestly that is just soo much hooey. Least it is for most of us, as I think it is simply our desire of wanting to make things be right that causes us to think we aren't doing enough. Truth is, we do, do enough and in many cases more than we even thought possible.

Truth is, it just isn't easy to do what we do, no matter how close we are, or how far off we are. We just need to accept that we are not superbeings, just ordinary folks, doing the best we can in a situation we aren't really wired to deal with. We cope.

In the grand scheme of things, I guess that is the best we can do, just cope and keep stumbling forward.

So keep venting, in its own small way, it does help us all realize,we really aren't as alone as we think.

Ian 
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Reply by CdnAtHeart
30 Nov 2016, 3:47 PM
Thanks, Ian!  I like your comment about how we are all just ordinary folk who "just cope and keep stumbling forward".  I have to embrace the idea that stumbling forward may not be the most perfect method of progress, but at least it's progress, and sometimes the best we can manage.

And I also like the idea of a Kindle.  My mom is a voracious reader and won't be able to take books with her into long term care (although the facility does have a lending library).  But I'm worried about something like that going missing in a non-secure environment. 

My mom's resistence isn't so much to technology, but to being connected to the world and other people.  She really isn't interested in having a conversation.  What she does want is to vent her rage and express her opinions.  She has always been this way. 

What I need to figure out is a way to get regular eyes on her sitation.  So I'm planning on reaching out to one of her long-time caregivers who has just retired in the hopes she'd be interested in taking on a part-time job of checking in on my mom on a regular but random basis.  Even if she could just do it for a couple of hours every week, I think that might be very helpful for all concerned.  

But, for now, we are all in a kind of transitional limbo, waiting for a room to become available.

I was able to have a good, long chat with my mom yesterday evening.  She seems resigned, and accepting of her choice.  I was worried she might have been intimidated or pressured into agreeing to the move.  But she assured me that it was, indeed, "my decission and only mine to make - I'm glad I made it."  She said, "I don't care what they do with me now."  I countered that by saying, "Mom, no one is going to do anything with you.  We are going to do things for you and work with you to do our best to see that your needs and wishes are met, and that you are treated with dignity and respect.  We all want you to be as safe and comfortable as you can be.  But no one is going to force you to do anything you are not comfortable with as long as you're able to make good decissions for yourself."  She seemed reassured by this, and agreed that she thought everyone was taking her desires into consideration and really working with her to do what was in her best interest.   

My mom has been part of Alberta's provincial Care West program for seniors for almost 14 years.  For anyone who doesn't know, they provide both home-support and on-site programs for seniors at low to no cost, depending upon income.  Their goal is to keep seniors in the homes and living as independently as possible for as long as possible.  They provide home support for dressing, bathing, light housekeeping/cooking (i.e. make the bed, make a light lunch/dinner), and administering of medications.  On-site at their C3 centers they provide bus service to and from the centers, and day programs that include lunch, consults with doctors, social programs, etc.  They also have respite, palliative, and hospice care rooms available for those enrolled in their program.

The C3 staff has been unfailingly excellent, and they have gone above and beyond in providing kind and competent care for my mom.  Their transition coordinator will be in charge of placing my mom in an appropriate long term care facility with which they are associated.  This takes a huge burden off me.  But it also raises tons of questions.  I look forward to speaking with my mom's case worker soon and I'm sure many questions will be answered at that time.  But I'm not sure I even know what to ask.

As for me, I alternate between feeling relieved and depressed.  What a sad way to end up.  And yet, I will be eternally grateful that my mom has been surrounded by the "kindness of strangers".  Things could be so much worse.  Yet feelings persist that I should somehow be able to make it so much better.  I expect to be on this involuntary roller-coaster ride for a while. 

At least I feel much better now that a decission has been made and we know what direction things need to go in.  I'm also aware that my mom might not make it as far as long term care; that many people agree to admission as a form of "giving up", and actually pass before the move can take place.  This would not be a tragedy for my mom at the age of 98 to be able to pass on her own terms without suffering the indignities of a long, drawn out death with only strangers to offer comfort.  Whatever transition she decides to make, I'll do whatever I can to make it as easy as possible for her.  
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Reply by KathCull_admin
07 Jan 2017, 4:23 PM
Just wondering how life was unfolding for you CdnAtHeart over the last couple of months.  Ian and Nouce thinking of you too.

Katherine 
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Reply by Nouce
07 Jan 2017, 4:40 PM

Dear Cdnatheart,


Wow, do I know the rollercoaster!


Pablo has started refusing showers. I think this is part of "giving up," and I pray that staff at the home can agree that he has the right to say no.


 


Nouce

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