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Long Distance Caregiving Challenges 
Started by SherriT
29 Jan 2012, 12:25 AM

My name is Sherri and I live in Ottawa.  My parents both have cancer and live in Wpg.  My only ssibling lives in Vancouver.  My mom is the the most serious, she has metastatic colon cancer and chemo isn't working.  She and my dad live in their own home and my dad is stubborn and refuses to move.  I am trying to help,from afar but I work full time anHama married with a 15 yr old daughter.  I struggle with guilt that I am not there.  They don't have much support there beyond professionals.  I have made contact with the social worker at the cancer clinic and that has been helpful.  Anyway any suggestions re long distance caregiving would be appreciated.  I would lmove them to move but as I said my dad won't.  He is not a caregiving type and I don't know if the home care system in Wpg would be enough to keep her at home.
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Reply by SherriT
29 Jan 2012, 12:46 AM

Sorry about the typos!  I pad and I am tired!
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Reply by moderator | modératrice
29 Jan 2012, 1:16 AM

Hi Sherri,

Don't worry about the typos. When I see typos in my writing, I take it as an indicator as to how stressed I am. (iPad doesn't help either :). There is no doubt that you must be feeling very stressed. It must be so difficult to be so far away at a time like this.

Fellow Virtual Hospice member Andait is facing a similar situation. Her/his mother-in-law is in Indonesia. Read the thread mother-in-law's leukemia 

How is your father's health? Has the social worker been to see your parents?
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Reply by NatR
29 Jan 2012, 1:30 AM

Hi Sherri - I can relate! Stress and family at a distance go hand in hand. I live in Timmins Ontario and have my mom in a ltc facility in Alberta! I hear you. Just today my mom had a fall and my sister who is POA was expressing guilty feelings like yours and mine. I have to remember my mom chose to live and settle in familiar territory - with friends and contacts. I have to let go of some guilt, but it will always hurt. All I can say is that your dad has made a choice and you can't do much except think of resources like you mentioned. Having someone visit your parents and knowing someone with observation skills will scope the situation out - is going to be of benefit.
Hang in there and keep talking about your concerns - there are a lot of people who get what you are feeling. Hope to hear back from you about your parents and hope it helps a bit to know we care. Best wishes Nat
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Reply by SherriT
29 Jan 2012, 1:47 AM

Thanks for your responses.  The Social Worker has met with my parents right after my mom was told she had lung mets.  I was in Wpg last week and met the various professionals.  My mom sees the oncologist Tuesday morning to find out the results of her latest CT scans.  Mybdad can't go with her and they told her to bring someone with her and I know the news will be bad.  I get overwhelmed thinking of how this will all play out.  My dad has always been very self centered and he is not able to put my Mom's needs ahead of his.  He is filled with anxiety all the time and would rather keep his head in the sand.  I have a strong faith that helps but it really also helps to feel support from people like you.  My dad has a rare slow progressing blood cancer that currently seems to be in remission.
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Reply by NatR
29 Jan 2012, 5:41 PM

Sherri, I am so sorry for all the stress you are experiencing.  It sounds like your mom could use a bit more understanding and concern from your dad.  It is heartbreaking when family members are too far away to be there in person.  Do you talk to your mom on the phone a lot? Email? Any contact you can give on a daily basis will help.  Hearing bad news is the worst.  The hardest thing is not to beat yourself up over not being there.  You are a great daughter to feel so much for your parents, your mom especially.  But your mom has choices too...and she chose to be with your dad regardless of his lack of support...forgive me if that sounds harsh - but you have to consider that there are many factors that keep us from being all that we can be, doing all that we can do.

My parents lived at a distance from me most of my adult life.  My father was lacking in feeling toward my mom - I suffered guilt for years - over my inability to help my mom.  But the bond, the connection, the need to be with him was more important for her.  Eventually she did leave him, but it was too late.  She was then lonely, unsure of her direction, feeling guilty about having left, just so many things overwhelmed her. I even tried moving her to Ontario but she went into depression leaving all her friends and familiar places behind.  So now...I am in limbo like you, wishing things were different, wishing I could visit her daily or weekly, wishing...but the reality is...it was her choice to return.  

I am sharing this with you hoping that in some way it helps you understand that you arent at fault, you are doing all you can do.  

I wish I could offer you some really good piece of advice...and the best one is to share your feelings, let it out, even the pain and the tears, and just take one day at a time knowing you are doing the best you can.  
Keep talking, keep letting it out
Best wishes, Natrice 
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Reply by SherriT
29 Jan 2012, 6:26 PM

Thanks so much Nat.  Your words are so helpful.  I have a history with my dad that isn't great.  It's a long story I won't get into but he has always been emotionally abusive to my mom, my sister and I.  My sister cant stand to be near him and has inherited hisanxiety so she can't do too much.  I wouldn't worry so much about my mom if he were a normally functional human ( sounds awful I know, but truthful).  Just one example, my mom had lung sx in  Sept to remove lung mets.  My dad drove her home from thehospital and turned around and went out for dinner with a friend.  He leaves her alone to go to the casino etc even when she is weak from her chemo.  I e mail my mom several times a day and call a couple of times a week.  I just visited for a week.  But as I said, I work full time and only have so much time off.  
I hear what you are saying about her having made choices.  I think that as well.  She chose to marry this dysfunctional man and probably should have left him but would have been too fearful.  So for now I am trying to stay calm and be a good mother to my daughter. I know it doesn't help anything to worry and stress out. My husband is very supportive thankfully.   I belong to agreat church here in Ottawa and get alot of support there too.  But iso help helpful to hear from people like you who are going through this.  Thank you.
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Reply by NatR
29 Jan 2012, 7:11 PM

Hi Sherri, Glad my words helped - its hard to offer advice to a stranger but we arent really strangers, we are all travelling the same course in life, some of us have been down a fork in the road before others, so then we can at least share our experience.

I have found much support and understanding from total strangers on the internet who inadvertently become acquaintances or even friends.  For years, before the Internet and communication freely given - I spent a lot of years in depression, fighting to make decisions in life, unsure about so many...and now I am grateful to find answers, direction and validation for feelings, how to cope with so many things in life.

I am glad we have connected here.
Speaking of churches, my father was a preacher, but he also was diagnosed with manic-depression in his 70's while in hospital recovering from stroke.  I watched abuse, verbal, physical and psychological take place over the years.  I never thought it was right but I was kept pretty close to home and was not allowed to make decisions or spread my wings.  

I know your mom will appreciate your constancy through emails and phone.  Yes, you have a job, but there is also a way to get time off to be with a parent or family member who is not going to make a recovery...did you know about that?  I dont recall the details but you get paid to go and be a caregiver to your family member...and your job is held for you.  Maybe that is another thing you can check out with govt. services?

If that is not possible and things are as cold as they appear from your words about your parents - your mom may choose to come and be with you for support?  Even to have her for a time - would make you feel more like you gave her what she needed?

The bottom line is that this is your mom, sounds like you can offer her some choices, and she can decide to take them or not..if she chooses to stay where she is, then you have to let it go.  That is another thing that is tough...when you dont have control over things...and grief on top of that.

I hope that you may find a counsellor in your church? or your area? that can give you a bit more support?  Sometimes it works, sometimes it is better with total strangers like you and I.  Feelings are part of the written words we write.  I feel your desperate need to help - being torn in half trying to be two places at once.  How old is your daughter?

Hope that today you do something for just You.  Take at least one hour, music, a hot bath, a book, whatever will take you away from the current situation.  You deserve a break.  Even though you are not being hands on caregiver you are certainly there in your mind.  I am learning these lessons from being a caregiver myself.  I have had to learn that I too deserve a break, personal time, fun, time with family or friends...whatever it is that makes me happy. 

So give yourself a pat on the back and stay in touch.
Nat :) 
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Reply by SherriT
29 Jan 2012, 8:41 PM

Thanks again Nat!  My daughter is 15 and she is great.  We just went for a nice walk on this sunny day.  I am aware of the 6 week gov't program and may end upsuing that towards the end.  I know they have palliative care places in Wpg but I think I am more concerned about between now and then.  But for now it is one day at a time and I await the CT scan result on Tuesday.
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Reply by NatR
30 Jan 2012, 12:11 AM

Please stay in touch, your daughter is almost grown up...glad you were able to be outside together in sunshine today.  Let me know how things are going after you get the results - and how you are feeling.  I will be thinking of you and hoping that the next couple of days go by quickly...hate waiting..
Nat 
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