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Reply by NatR
17 Aug 2012, 1:23 AM

Dear KCBJ,

I feel for you - I really do!
Be gently persistent in continuing to get home care for your mom

She doesn't understand that if for some reason you are unable to look after her - she will be in serious trouble!

I believe that you are beginning to turn the tide - you are beginning to stand up foryourself! And for your mom!

Dont back down!
I remember similar seniors who resented me coming to care for  them - it's a real challenge to win over  the client! But eventually you will figure out a way!

The coordinator perhaps was trying to persuade your mom- but not knowing her at all, she said something that didn't go over well!

My advice is to stand firm and keep trying until you find the right solution!

Do not feel trapped, you will return to the spot you were in a while back, feeling trapped , hopeless, nothing to feel happy about in your life.

I know you want to do it all, but you aren't a super hero!  You are human like the rest of us!

Hang in there and I hope that you can figure out a solution!

I had a client once that was so unhappy that I was there in her house.  She soon figured out that without me she couldnt do much for herself.  A hot meal, a favorite dessert, a picked flower, some conversation helped improve things.

Caregivers are prepared and trained to work with the elderly - I do hope you find the right fit!

You are deserving of breaks!!
You are a great daughter!
Keep us posted.  Glad you wrote.
NatR 
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Reply by KCBJ
17 Aug 2012, 5:44 AM

I wonder about how much experience they actually have. She does know my mother. My mother gets nevered up over little things, so the comment was irresponsible! It took all week to calm her down. She had nightmares. Asking me what would happen to my mother if anything happened tome is one thing -- which is what she did. My mother...well...

Honestly, I just wanted to shake her and say is anybody in there. Just don't need the additional stress. 
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Reply by NatR
17 Aug 2012, 2:37 PM

Hi KCBJ,

I hear your frustration
I should have clarified - that I meant the hands on workers who will actually work with your mom- there is a big difference sometimes in the understanding of the supervisors who really don't do the job - and don't seem to "get it"

Hoping that somehow a solution will present itself
Just don't give up
I am rooting for you 
Hope today is a good one -
Sending you a hug
Best wishes NatR 
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Reply by Cath1
18 Aug 2012, 7:38 PM

Dear Barb (KCBJ):

I understand completely your frustration over what the home care worker did with your Mom! It is unfortunately in my and others' experience a common problem.

When my Mom was still living independently I was her power of attorney and the CCAC (in Ontario the government home care coordinating agency) knew my mother's long history with her mental illness and they were expressly told by me not to discuss my mother's illness with her as she would she it as an invasion of her privacy and the episodes of increased paranoia would ensue should they disregard this instruction.

They repeatedly ignored the instruction - with almost every visit by a social worker, supervisor or home care registered nurse - the professionals  - my mother would be upset for days after, and if the questions (she called it interrogation) went on for a hour or more, my Mom's distress would continue for weeks. I, just as you do, felt the repercussions for this complete lack of judgment and insenstivity on the part of those one would expect would know better. Mental illness and the needs of the elderly are so misunderstood by too many so-called professionals working in the field of healthcare, unfortunately.

On the upside, the actual home care workers, the PSWs, were amazing with my Mom and I cannot recall any of them ever overstepping their bounds and her boundaries. These workers were not informed directly by me to tread lightly and respectfully with my Mom, yet they possessed the human qualities of compassion, empathy and common decency one needs from a caregiver and that was so often sorely lacking from those with "better" credentials. My Mom loved her "bath lady"!:)   

Barb, you are in my opinion completely justified in feeling angry about what happened with your Mom. I would say that you could speak with the supervisor to ensure that the same thing doesn't happen again in the future, but in my Mom's care they rarely retained this critical information nor did they act appropriately upon it.

The person whom visited with your Mom and you has no idea how much damage was caused with that visit and the totally inappropriate comments, and I feel so sorry that you had to be subjected to such incompetence and that your Mom and you are likely still dealing with the distressing ripple effects. How can these professionals not clue in that it may not be a good idea to speak about such things in the presence of a frail and elderly client? I will never have the answer to that one!:) Hang in there, Barb and I hope things will settle down soon. You are right, with everything you contend with daily, you didn't need more added to your already overflowing plate!

With affection -hugs- xo
Cath1  


    
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Reply by KCBJ
19 Aug 2012, 2:48 AM

Thanks guys! Appreciate your support. She's calmed down slightly now. OMG!! that was a tough week. But she's lucky I can take time off quickly like that.

Health deteriorating and more confused this week. Don't know if direct result of last week but she is worse.

Read piece about Stallone's mother having as facelift at 90 and sporting a mini-skirt and exaggerated lips. Noticed the foto of her wasn't a closeup. :-) \Something to look forward to. I can see me now. Finally free!! What to do??? Lets get a new face and body!! Hike that skirt up and I'm ready to go -- with my walker and geritol in tow. :-)

Funny how things turn out in life. One day you're out and about, friends, boyfriends/ acquaintenances, then poof! all gone. I've bought her pretty much everything she's opened her mouth for and then more. Then she says all she has is the dogs. She'd be alone if it wasn't for them. Turn the other cheek quick. This one is raw!

I'll be paying for her the rest of my life. No life insurance which of course is my fault. Just found out a few years ago. Yep, there will be memories, but not the good ones.

Think I was kidding about being 90 and finally free?? 
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Reply by Cath1
19 Aug 2012, 3:59 AM

Dear Barb (KCBJ):

I hope you will accept my advice in the spirit in which I offer it to you. Truly, I hope you will seek out professional counselling to express your anger and resentment that you feel about your situation and your distressing feelings about your Mom. It is highly unlikely that she will live another 30 years, and when she does pass away you won't want to be burdened with regrets.

I cannot imagine that your Mom does not sense your feelings about her and while she may indeed be the most inconsiderate and demanding person on the planet, she is 98 years old and may not be responsible for her behaviour as something psychological may be going on with her that she truly has no control over. I know you have said she has been difficult for years and that you choose to take care of her out of a deep sense of obligation which is admirable, but if your feelings are intensely negative about her how can you care for her in a positive way? Do you see what I mean?

Barb, perhaps you have been in this situation so long that you can no longer see what is happening to you and your Mom. A counsellor could help you gain a new perspective and deal with your feelings and help you to choose other ways to support your Mom so that you could have a chance for your gentler and more loving feelings for your Mom to emerge. I am hoping you will think seriously about seeking help so that your life and your Mom's will be improved before it is too late to change the situation and to repair the emotional damage that you are both scarred by.

I honestly don't say these things lightly, nor do I wish to judge you or make you feel more upset, Barb. I really hope you will be able to find someone to help guide you in your situation so that both your Mom and you will feel better about life and each other. Your happy future depends upon you dealing with the resentment that is eating away at you, Barb.

Your Mom and you both deserve better than living in a hostile environment. There is counselling help available to you and I hope you will consider accepting it for both your sake and your Mom's. Some of your suffering in your situation may be unavoidable, but if there is a chance that some of your suffering could be alleviated or you could find ways to cope better with or unload your negative feelings, I think you would find a lot of emotional relief. You need to seek support before you can receive it as rarely do people offer it in situations such as yours.

I believe wholeheartedly that there are better and healthier choices that you should not reject without checking out every option. I want to see you regain the happy and hopeful Barb you remember yourself as once being, and I believe it is possible. The choice is yours, Barb, I know, and I really hope you will choose to explore all the options at your disposal. You need not suffer alone, and nor should your Mom bear the brunt of your anger and disappointment, no matter how justified are your feelings about her.

You both need the reassurance of a warm and loving touch, and patience and kindness that comes from the heart. If you give up just a little control and trust that others could help where you cannot, it may be the most loving thing you could do for your Mom and for yourself. Accepting help is not a sign of failure, it is a sign that you have the courage and the compassion to know when your limits have been reached. I know you have immense courage and compassion, Barb and I hope you will choose to show it yourself as well as your Mom.
  
Please let me know your thoughts once you have considered what I have said tonight. I hope you know that no matter what you choose, I will be here to listen, and to accept and support you in whatever it is you decide to do. 

With affection -hugs- xo
Cath1           
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Reply by KCBJ
19 Aug 2012, 4:41 AM

Thanks Cath. I'm certainly not upset by your comments. Quite frankly, I'm embarrassed. Yes I know others are in similar situations etc but I still feel that way. I wouldn't even know how to start. It took me ages just to start writing here and feel comfortable enuf to send you a link to my family and my name. I feel trapped more when I'm tired. Maybe I should only write when I'm in a good mood -- ok, maybe more to the point, better mood. :-)

I've actually looked at listings for psychologists.I'm concerned that bcuz they are not in this kind of situation or even similar, they just won't understand. Just like our family doctor. Like the Home care coord.

My chiro was telling me how his wife went to see a specialist. It was one visit and she never went back. Just could not understand the situation.

I let out my frustrations in my notes here and I actually feel much better.

Thank you Cath and thank you for not giving up on me. I may need a head shrink more after than now.   

A big big hug from me. 
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Reply by Cath1
19 Aug 2012, 5:34 AM

Dear Barb (KCBJ):

I so understand your reticence about wanting to seek help for all the reasons you describe and more, and I agree that the finding the right fit in terms of a good counsellor may be a challenge, but it is worth trying - YOU are worth trying for!

I don't want you to ever feel embarrassed or ashamed of the feelings you share here with us - ever! Please don't think you should censor what your heart is feeling. The point of our conversations is so that you will have a place to safely unburden your hurting heart without fearing that you will be judged. I know your humour is your way of coping and also of keeping a shield of protection around you as you feel without it you may simply fall apart. You are super strong - obviously - but you are also fragile and I see it because I felt both ways myself.

I do not judge you, Barb and I do understand some of the feelings of resentment that you feel toward your Mom because I also felt resentment towards my own mother when she living and was in difficult moods that caused her to take out her own frustrations on me. I also felt very hurt and unappreciated at times and found it very difficult to mask my hurt feelings which often manifest in a simmering resentment which I knew then and know now is unhealthy if left to fester. I know also though that her challenging behaviours were not her fault, nor was it my fault that I sometimes lost patience with her and wished I could simply escape her moods in some difficult moments.

I also hated feeling like the martyr in my situation with my Mom because I genuinely feel that relationships are or should be based on mutual respect and equality even when unbalanced if you know what I mean. It was never my intention to hold power over my Mom although sometimes I did just that in my less than best moments when feeling most vulnerable and exposed to her hurtful words or behaviour. When one person is healthy and the other isn't, it just is not right to make the weaker person feel beholding or responsible for feelings they can't help. It takes a lot of positive self talk and discipline and support from others to achieve that state of loving acceptance, but with effort it can be done.

I am most proud of the fact that I succeeded more often than I failed in that respect as no one, including my Mom or yours, likes to feel they are a big burden. Love and understanding, patience and kindness helps to soften the situation and trust me when you allow yourself to express this higher and more compassionate side of yourself with your Mom, you will immediately feel better about yourself and her. It also requires a certain amount of emotional maturity and acceptance of your Mom as she is, not as you wish her to be, and that may require that you be a little more detached than is natural to you, as I had to be with my Mom at times in order to cope. I often felt that I needed to protect myself more than my Mom needed my protection but that was not true. My Mom was frail and suffering from dementia and I was learning about this disorder as we went along with very little professional guidance. 

I chose to express my feelings with others I love and trust most of the time because I had the good fortune of having that kind of regular support. That makes a huge difference and it allowed me to maintain my equilibrium and to spare my mother from being subjected to my darker feelings of frustration and anger. It is not fair to express these feelings to our mothers when they have medical or psychological conditions that cause them to behave in a challenging way, but neither is it fair to continually place so much pressure and blame upon ourselves that we beat ourselves up for simply feeling helpless and out of our emotional depth at times. It's fine to feel angry and discouraged, used and put upon, as long as we don't keep feeding these feelings because feeding them only intensifies them and adds to our feelings of remorse and shame and it depletes our emotional resources.

I can tell you for certain that there is not one time when I was impatient with my aging Mom when she had dementia that I don't wish I could have been kinder. She used to call me daily, the moment I would come home from work the phone would be ringing and I was tired and I wished she would allow me just a half an hour to unwind before calling. You cannot imagine how much I wish she could phone me every day now that she is gone. I so miss her voice, her laugh, her neediness even as crazy as that sounds. I miss my mother as she was before dementia stole her ability to communicate and when I think back at the hard times with her, when her mental illness made life for her and me and my family painful, I still wish I could have her back with me. When we are immersed in trying circumstances it is so important to maintain perspective, humour and forgiveness for ourselves and those we love most. 

I know that I did my best for my Mom in every situation, just as you do for your Mom, but sometimes as human beings we cannot always behave at our best or carry out our best intentions and we falter and need a hand to help us get back on the right path. The exhaustion one feels when another person is completely dependent upon them is unbelievably difficult to deal with. I did not find it easy to ask for or accept help with my Mom as I needed to feel control in a situation where I had so very little, but despite how extremely hard it was for me to accept help, after a while I did. That is a choice I don't regret because I needed the help to be the best person for my Mom when she needed me and it allowed me the space I needed to feel and to express to my Mom the deeply loving feelings I had for her and she for me.

I hope you will search out the help you need until you find the right person. I know the person is out there and that you will feel like a new woman once you meet up with whomever it is that will understand your situation and recognize that you have a huge heart that is breaking under the daily pressures of caring for and loving your Mom. You will thank yourself for doing it, Barb and your Mom will thank you too! Wouldn't that be a nice change!:)

With affection -hugs- xo
Cath1    


     
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08 Sep 2012, 1:12 PM

Hi Barb,

It has been quite some time since we heard from you. How are you? Is it a rainy weekend where you are? I hope with having a gazebo, you are still able to go out into your garden for your well deserved breaks and space.

Hope to hear from you again soon.
Colleen 
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Reply by Cath1
08 Sep 2012, 1:49 PM

Hi Barb (KCBJ):

Great minds!:) Colleen put to words what I have been wondering. Where are you and how are you doing?

Please come back to update us all with what's been happening in your life and in your life with your Mom. I know it gets tiresome for you to have to report that things are the same or heaven forbid even worse, but we are here to listen no matter what is going on with you.

I hope you don't interpret my posts as lectures as I worry about that and I don't mean to add more pressure on you, Barb! I care about how you are coping and truly, I am ever amazed that you do continue to cope so well under extremely trying circumstances that most of us can only imagine. I know that your sense of humour is among your coping mechanisms but what you are going through in your life is no laughing matter. Seriously, I care about you, Barb, as do we all and I hope you never doubt that we do!

Take care, until the next time we connect!:-)

With affection - hugs -xo
Cath1    
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