I wanted to send a fierce but truthful letter to my brother and sister-in-law to open their hearts. But I thought I'd post for insight first

Follow
Share

Initially there was complete family DENIAL of Mum’s dementia! Now your strategy is DENIAL of the caregiving requirements of dementia. This makes complete sense - why would there not be?

I have given you a detailed spreadsheet of the costs of this home and caring for Mum many months ago - this was the same spreadsheet that was given to Revenue Canada. Also a couple of times I’ve sent you what it costs for full time care at home in Ontario. I have even contacted the author and suggest she does an assessment so you can accurately know what’s being provided and what might be needed in the near future.

This you did not feel necessary. Why? Because you don’t want to know - because denial serves you.

Not acknowledging a fraction of these costs is at the heart of what is causing so much stress - and tearing a rift in the family. I have been shouldering a constantly escalating level of care of Mum for 5 years now. You believe that as you did not care for Mum at [brothers house] that anything that I give Mum is without value - as it is not cash (before or after tax).

[Sister in law], I have to keep giving Mum care otherwise she feels abandoned and her mental health and well-being spirals downwards quickly. Otherwise what if I did not care and let you and [my brother] pay for full time care and not worked hard to ensure great caregivers at less LESS than MINIMUM wage - because that’s what I’m managing. $40 for five hours. $1500 a month for 2. 5 days a week of live in care. I did 15 phone interviews and 5 in person interviews for caregivers in the last two months. I handle the training the scheduling the shopping and all the logistics. Your strategy is to devalue what I offer and only place value on the your “after tax” money.

[My Brother], you well know that [our sister] is not capable of consistent care for MUM. However, its very convenient that you constantly offer Playter and Caro. First you denied Mum had dementia - and the care needs that go with it - now you deny the level of care.

[Our sister] has only able to get here for about six hours in three weeks. If [our sister] could do more she WOULD. She has heart and is very well meaning. However she is overwhelmed by the ongoing circumstances of her life and has been so for some time. She, as I’ve said long ago, has needed real help to correct childhood patterns. Hopefully through this business training and opportunity she will get more insight and we can be of more real empowerment and support to her. But MENTAL health has been OFF your radar for as long as I’ve known you - why? The first time I heard you use the word was two weeks ago - in reference to what your students needed. It was good to hear, but a bit overdue. Time to do some reflecting back on how you behaved relative to Mum due to this blindness.

I’ve have over and over made sacrifices, both personal and in terms of Mum’s care and wellbeing, so you'd wake up to Mum’s care needs. I will NEVER DO THIS AGAIN. You are too busy and so you are blind to most of them. Mum is too fragile to leave her in your hands - your ideas of dementia are too simplistic and I will not let you discover through accident her real needs.

Your solution during the past six years was bring Mum back to [your house] over and over as a reason not to offer support - we did this many times - each time Mum was back in the same situation where her care needs were not acknowledged - and no pattern of care was acknowledged or provided. You made an offer that was impossible to accept as you were in denial of her care needs. Now you offer more or less the same thing - and as usual offering [my sister] - who has not been capable of consistent care for many years.

YES, it is a huge undertaking to keep an elder out of institutional subsidized care with advanced DEMENTIA!

Wishing it were otherwise is not going to change the fact that it TOTALLY changes peoples lives to offer LIVE AT HOME CARE at this Stage - or any stage really.

It is a sad fact that Dad left no provisions for Mum. But that is the reality that we must deal with.

Just say it - you are OK with institutional care for MUM. Don’t try to make it cheap. I’ve compensated for years - and I’m still doing it as I take another shot at getting my business off the ground.

These are strong words - but generosity and kindness seem to be of little value relative to money in this family. Why is this so?

I simply want fairness in caring for our Mother. And I am willing to be fierce in our Mothers interest - as she would be in ours. And I will no longer just ignore both fairness and my own needs to keep peace in this family. [brother] you have long wanted power and in this world you have some - but do not throw it around in the family. Family is built on love - Mum has mostly kept to this - even through the hell of dementia. And I am doing everything in my power to help her keep on this path. Except for brief moments you are not helping me serve Mum...

This discussion has been closed for comment. Start a New Discussion.
23

Comments

Show:
1 2 3
MarkJohn, that's great! And if I had occasion to edit a second time, I might catch some of those typos. God help me, I'm a terrible typist. I know just what you mean about people - its so frustrating to watch folks avoid discomfort in maladaptive ways, which only serves to make the real problems ten times worse.
(0)
Report

i am sorry MarkJohn...I addressed you wrongly and it does make a difference when addressing someone.
(0)
Report

@jennegibbs, I don't have a POA, Mum has no money and only a relatively small social security check each month. But I do have Power of Care, which seemed in Mum's case to be more important.
(1)
Report

MaggieMarshall, it is a shortcoming - I've suspected it for a while. Not sure what to do about it - it keeps coming up - a kind of outrage. For instance, last week I heard that an artist who is 28 and in the final stages of ALS was having a last show - and the artists community he lived in for the last six years - was too self absorbed to turn up. I find this hard heartedness hard to stand. It makes me want to shake people or as Herman Melville said in the opening of Moby Dick, "knock peoples hats off." I suppose its high time I too went off to sea - but that's one of the challenges of caregiving - taking time off. Anyway just wanted to say thanks for the directness and honesty - I can imagine you are speaking from a lot of experience.
(1)
Report

Do you have POA?
(0)
Report

Oh, stop. Why are you trying to get your family to understand? They don't WANT to understand. Why do you want to open their hearts?

God love you for what you're doing, Mark. You're doing angel's work. Expecting or needing others to understand what you're doing and why you're doing it is your short-coming.

I hope this draft of a possible letter is cathartic for you. I'll bet it is. But don't bother sending it. Waste of postage. Just do the next right thing . . . and know that your mom loves you for it more than she can ever say.
(5)
Report

JohnMark~Your sibs have already shown that they are incapable of helping with this issue no matter what their reasons are for it.

From my experience, YOU need to take the lead (as you have clearly done) and the only letter I would send it one that outlines what YOU have decided to do. Such as, a letter that states: due to our mother's health issues and care requirements, I have looked into long term care facilities for her. I have found one that I believe will provide the care needed for our mother due to progressing dementia. I will be moving her to said facility on Nov.?? 2014 as all health care providers involved in our mother's care agree this will be best for all involved. Please be assured that I will still be primarily involved in our mother's care, overseeing that her needs are met while I visit reguarly.

I suggest that you have your mother placed. I am very involved in my mothers care as stated in the above simulated letter to your sibs. I also visit for quality time. It is a hard adjustment period to go through but I believe it has been well worth it for both my mother and me/hubs/sibs.

Your sibs will most likely never step up to the plate to help...this is the reality today. Work on not holding it against them but at the same time understand that you, yourself have done everything possible, reasonable and what is best for you and your mother.
(1)
Report

Wow, I really got a lot of help and support from you folks! Its been a busy, tough couple of days, but posting this vent letter and getting your feedback - was WAY better than sending it to my Brother and Sister in Law! It helped me be patient and wait to get through the anger and outrage from their last messages. I sent a very calm letter saying there's two of us to care for Mum so its logical that we share the costs down the middle. A few minutes ago they said that they have reconsidered - they will pay some of her living and care expenses. This is a very big step forward. Thank you all - and a special thank you to you vstefans! It was what I was trying to say but could not yet get past the anger - you modelled it for me and that is a true gift and help!
(3)
Report

People's attention span now a days are the length of a text message.
(0)
Report

I am a compulsive editor. Try this:

Initially, none of us watned to believe that Mum was developing dementia - and then when we had no choice but to believe it, we did not want to believe it would cost so much or require so much care. My detailed spreadsheet of the costs of this home and caring for Mum, which was also given to Revenue Canada, plus the data on actual costs for full time care at home in Ontario was to document things so you can accurately know what’s being provided and what might be needed in the near future. I feel torn by your not acknowledging a fraction of these costs, as I have been shouldering a constantly escalating level of care of Mum for 5 years now. It may not be visible in terms of cash value, hence the data provided. More importantly, I have to keep giving Mum care otherwise she feels abandoned and her mental health and well-being spirals downwards quickly. I think that if had let you pay for full time care, it would have been a great deal more expense than my having less than minimum wage, and $40 for five hours, $1500 a month for 2.5 days a week of live in care. I did 15 phone interviews and 5 in person interviews for caregivers in the last two months. I handle the training the scheduling the shopping and all the logistics. Please don't devalue my efforts and focus on ly on after-tax values! [Sister]is not capable of providing the consistent care Mum needs, and offering that as a suggestion isn't helping right now. She can only get here for about six hours in three weeks; she has a lto of heart and would do more if she could, but her past and present circumsntances are overwhelming. Her mental health and well-being can't be brushed aside; she needs the opportunities she has now to rebuild herself. My sacrfices, both personal and in terms of Mum’s care and wellbeing are not something I feel you have really been able to "see"... I'nm afraid without being more hand-on invovled, your ideas of what dementia really entials are too simplistic and too far underestimate her real needs. When you offer to bring her back to your house over and over as an alternative to offering the support I thought she needed, each time Mum was back in the same situation where her care needs were not acknowledged or met.

It is truly a huge undertaking to keep an elder out of institutional subsidized care with advanced dementia! Wishing it were otherwise is not going to change the fact that it totally changes peoples lives to offer ongoing home family care at this stage. It is a sad fact that Dad left no provisions for Mum. But that is the reality that we must deal with. I think we have crossed the line now and need to acknowledge the need for institutional care for Mum. It needs to be qua.lity care and that may not come cheap. I'm really struglling at this point with it especially as I take another shot at getting my business off the ground, which is the only way to an independent financial future for me. It is not wrong for all of us to chip in and do what we can to give Mum the care she realy needs, without one or all of us being deeply and permanently harmed in the process. But, no one of us can handle it alone anymore, if we ever could. I'm sorry this is so hard, both emotionally and financially, and I hate to sound harsh, but Mum and I need you to step up to the plate and take responsibility rather than remain in any degree of denial of the harsh realities of her condition and care needs.
(2)
Report

1 2 3
This discussion has been closed for comment. Start a New Discussion.
Related
Questions