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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...

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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.
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i am sorry MarkJohn...I addressed you wrongly and it does make a difference when addressing someone.
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@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.
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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.
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Do you have POA?
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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.
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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.
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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!
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People's attention span now a days are the length of a text message.
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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.
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MarkJohn, I see from your letter that you are in Ontario. You stated that you have "done 15 phone calls and 5 in person interviews" to find caregivers for your Mom. From your description I would think that she should be eligible for at least some government covered home care. You shouldn't have to bear the whole financial burden yourself. It is up to you to contact your local CCAC and ask for an assessment. And also be aware you must be assessed to even be put on a waiting list for a nursing home, and wait times for your preferred home can be a year or more.
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MarkJohn,
I just joined this group a few weeks ago. I traveled to my home state with my husband and teenagers to visit my parents and grown son. My only agenda was to set up a " HomeInstead" care person to drive my Mom to doctor appt. or to sit and keep my Father company. My Dad had stopped driving but continued to mow the grass, use the snow plow, however he was not showering daily, taking his medications, and refused to go to the doctor. Within three weeks I was flying back with my Dad and had set up Assisted Living (Memory Care-secure area) an hour from where we live. The past 6 weeks have been hard traveling to see Dad, overseeing finances (my husband helps), checking on his care, medicines, etc. I will be moving him again next Monday, into a facility that will be 8 min. away in our hometown. I have not heard a word from one sibling or my grown son who lives in the state I grew up in. I was met with huge resistance (read my original post). I have found in the past few weeks that when it's all said and done they do not, and will not, have the dedication and ability to love and care for their parents like we do. I have decided that it's not my responsibility to keep them updated on the details, they are not concerned that I still am raising my kids, highschool and college, a husband who travels, and trying to take care of myself. I could not leave my father to sit on the couch and decline, while my almost 78 yr old, 107 pound, mother with debilitating shingles waited on him hand and foot. I did what I had to do. You will do what you have to do. Please get whatever help you can afford. Yes, the cost is staggering. My parents were beyond frugal, and the money they saved and scrimped is for their care..no one understands that, they saved an incredible amount of money. My parents never wanted to be a burden to any of their children. If my father had an illness that he could stay at home, he would be here with me now. My dad will wonder and leave the house, he needs direction to bathe, what clothes to wear, given medication etc. We take it one day at a time and he's doing really well. He listens to the Nurse and assistants at the memory care facility, but would not listen to Mom. You are doing a wonderful job, the people who should be thanking us and singing our praises usually don't..and honestly we're strong we don't need it. Your Mum would be so proud of you and the love you have shown her. The best feeling is when you close your eyes at night you can rest knowing you did the right thing!
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MarkJohn, I wrote a similar letter to my stepdaughters who are both in denial of their fathers dementia and are prone to being critical of my care of him without offering any help or support.

After many prayers and hopes that they would "see the light" I realized that their denial was their crutch and has made the whole situation easier for them. Really no reason to help because Dad really isn't as bad as "she" and the doctors say and we really don't like how he is being taken care of anyway.

So for me sending the letter to them would have been counter productive, so I sent it on to a couple of very supportive friends and family stating that it was something I could not send to stepdaughters but needed to get it off my chest.
I also told them that if they wanted to make a quick response fine, but that I was not opening a dialogue that it really was just something I wanted them to be aware of what I was going through. Was a wonderful way to get it off my back and get some nice supportive replies from people that really cared.

Good luck with your Mom and know that you are not alone.
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Pam, may not be a smooth talker, but she knows from hard won experience that one person can't take care of a dementia person. Your letter is a cry for help. You are passed the burnout stage. Maybe it is time to consider a nursing home. Your Mom will still need your care and attention. In some ways, the caregiving is harder, but you will get sleep at night, and have some semblance of a life. Can you get some counseling to help you make the decision? We are here for you. Keep talking to us. If it helps, I think you are a strong, compassionate, outstanding man. Your Mom must be so proud of you.
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I can tell you from experience that hearing from the specialist that mom had dementia and that it was going to get bad. That dad and mom would need Everyone to help out because it was going to be a long hard road. Our culture's tradition is that the oldest boy takes care of the parents. Dad even gave him a large land (half of dad's) next door to him. When the chips fell, dad took bro and I to the specialist so that it was explained to us what we were facing with mom. Dad even took us to the lawyer and then the court to do Dad's Will and guardianship for mom. Despite all this, my oldest bro did not help in all the years we needed him. Dad finally stopped a few years ago. He said that his repeated asking for help sounds like begging. sigh.... I know exactly what he means.
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Your profile says mum has general age related decline. She is now developing dementia when the care will become even more isolating and difficult for you. You might want to consider getting a geriatric care manager to do an assessment of your Mom. By involving an expert in the field, you are removing some family dysfunction. Then you have a report to provide to interested family members. Whenever they come to visit make use of the time to get away and just do something for YOU!

After the assessment is complete then have a family meeting the geriatric care manager can facilitate. Hearing about Mom from an impartial third party will be helpful and hopefully stop the disagreement. Though when bro sees the report, be forewarned that he can still live in denia.
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Great vent letter. You know what it all means and pouring it out was no doubt useful to you.

But as an uninitiated reader, I can't figure out what you want your audience to do. Send money? Stop bothering you? Give you moral support? You want fairness, but what does that mean they should do? Do you need their blessing or their money or their permission, or what?

MarkJohn, you are probably right about the denial factor. There is an awful lot of that going around. But calling them out on it here probably isn't going to remedy that, especially since you have already sent hard evidence in the form of a spreadsheet about one aspect of the situation. Is that what you are trying to do -- break through denial?

I also can't figure out exactly who is the intended audience. Is this aimed at one or two individuals, with others copied in for information? Or is there something specific you need from particular individuals?

Again, great vent letter. I hope it helped you clarify your own feelings and what you want to have happen.

BTW, who has authority to make decisions on Mum's behalf? Do you have POA?
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Thanks, you are right - I will not send - until I find a way to say it without blame. I know its not ready to send, your right I just needed to vent. I'm going to keep looking after my Mum for as long as I can - that's between me and her - its helping me to grow up and so far I can live with that. I'd just be careful when I'd advise others to put their Mother in a home - just because it's worked for you does not mean that it's works for everyone - and of course the reverse is also true - there's a lot of factors to consider. It's been hard discovering what our family is really about when it comes down to it. I won't let myself get bitter but I do get angry from time to time.
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Great vent letter, now tear in little, tiny pieces and burn. Take a deep breath and breathe out to relax. Tomorrow get busy finding a place for your Mum and then start taking care of yourself.

This is too much of a job for one person and we are all here to tell you what you now know....you really can't depend on family or friends. Not all are cut out to be caregivers for whatever reason. Big news you can love and advocate for your Mum without destroying your own life.

You have done a wonderful thing and now it is time for professional care and for you to get on with your life. Wish you all the best!
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MarkJohn, I would say now that you have written the letter and vented your frustration to put the letter in the fireplace and see your anger go up in smoke. I don't really see anything good coming from this letter. All I see is the potential for a greater rift in the family.
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I agree with FreqFlyer - your letter is waaaaay too long. You don't open someone's heart by beating them over the head with their failures and lack of compassion. That will only close them tighter than a drum.

I think you need to get all of that anger and frustration out before you approach them. Once all of that negative stuff is vented, you'll be able to approach them in a more loving way. You want their help and care, but I fear your letter will only send them in the opposite direction. And I'd approach them each individually, so that they can't gang up on you together if they get one letter.
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your letter shows a real burnout. Get mom to Assisted Living and you will all feel a lot better. Give yourself time, a good six months, to heal afterwards. Our mom is at at ALF, it costs under $3K per month, and she is much happier than she was at home.
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MarkJohn, if someone sent me your letter, after the first sentence I would stop reading.... I suggest you don't start out saying they are in denial, and delete any complaints against the person you are trying to reach. You want them to continue to read. Just be matter in fact that Mum has been diagnosed with dementia and that it will only get worse.... and as it gets worse, more help is needed thus more expense. What do they suggest? Can we work together for the greater cause?

I would cut that letter by 3/4th, but I understand your need to want to make sure your brother and sister-in-law understand, but too much verbiage will cause the reader to tire out and not finish. And to become more angry.

A letter should be written to catch the attention span of a few seconds. And the reader will want to feel like they are needed, not scolded.
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