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Did tough love scare away OP?
Old 01-30-2016, 06:52 PM   #21
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Did tough love scare away OP?

He hasn't been back. Perhaps he is too busy doing actual caretaking at the moment.
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Old 01-30-2016, 07:10 PM   #22
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Having helped care for a few people I can tell you that as the Alzheimer's progresses your Dad will need to be in a home. Many people sleep all day and stay up all night wandering, he will need diapers and they forget how to chew so need their food turned into mush and often have to be spoon fed. I worked with people with disabilities for many years and although I know your parents acted out of love they chose the wrong path for your sister. As others have mentioned she could have lived in a group home etc and if too disabled for a regular job could have worked in a sheltered workshop where she would have had friends etc and be independent. I had more then 1 talk with parents that were planning on keeping the kids home and my first question would always be "What happens when you die or get too sick?" Many people with down's Syndrome hold jobs but it is important to make workers out of them by teaching them the skills when they are young and have not sat home for years. You will burn out and sacrifice your own health, etc. Taking care of 3 people is just too much.
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Old 02-09-2016, 09:37 PM   #23
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Firstly, thanks for all the feedback. With all the inputs, I took a break to process all the advisement! Pardon the absence but it's been a turbulent time which has cooled off thanks to me stepping back and re-evaluating everything.

Had a long talk with my folks and they both want to remain in their home long term and for a lack of a better phrase: until the end (with great respect). My sister will be living independently in one of my parents' rental units where she will be assisted 24/7 due to her disability.

That said, my folks also indicated that they would like for me to oversee their care until they both pass. I'm their son and it's their wish. I am planning on calling it quits this April. In my profession, if one is out of work 6+ months chances are there would have to be steep concessions to get back in, if even possible.

But, I'm going to do this because I want too.

I''ll be 46 this year and between family health issues and work stress and travel, I made my choice. Parents have LTC costs and daily living costs covered and assets to be left for me to supplement my sister's future needs. Principle is not be touched as passive incomes more than sufficiently cover expenses. Reserves as a safety net are also in this cash flow model.

Rentals: gross 90k per year excluding income and consequential costs.

IRA and cash to conservatively produce 20k per year again gross. Again, principle not to be touched.

Primary residence and rentals paid off and will not be sold.

Ran it by accountant and he said things are fine based on my annual spend of $60k which includes care for my sister excluding taxes.

Thanks again to all which help with my decision! This board is invaluable. Lord bless.
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Old 02-09-2016, 10:43 PM   #24
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Originally Posted by Caregiver View Post
Firstly, thanks for all the feedback. With all the inputs, I took a break to process all the advisement! Pardon the absence but it's been a turbulent time which has cooled off thanks to me stepping back and re-evaluating everything.

Had a long talk with my folks and they both want to remain in their home long term and for a lack of a better phrase: until the end (with great respect). My sister will be living independently in one of my parents' rental units where she will be assisted 24/7 due to her disability.

That said, my folks also indicated that they would like for me to oversee their care until they both pass. I'm their son and it's their wish. I am planning on calling it quits this April. In my profession, if one is out of work 6+ months chances are there would have to be steep concessions to get back in, if even possible.

But, I'm going to do this because I want too.

I''ll be 46 this year and between family health issues and work stress and travel, I made my choice. Parents have LTC costs and daily living costs covered and assets to be left for me to supplement my sister's future needs. Principle is not be touched as passive incomes more than sufficiently cover expenses. Reserves as a safety net are also in this cash flow model.

Rentals: gross 90k per year excluding income and consequential costs.

IRA and cash to conservatively produce 20k per year again gross. Again, principle not to be touched.

Primary residence and rentals paid off and will not be sold.

Ran it by accountant and he said things are fine based on my annual spend of $60k which includes care for my sister excluding taxes.

Thanks again to all which help with my decision! This board is invaluable. Lord bless.
I'm glad you had an opportunity to step back and re-evaluate your path.

Best of luck to you and your family members as you move forward.
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Old 02-10-2016, 08:05 AM   #25
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Congratulations on your decision. Rather than quit would it be possible for you to take a long leave of absence? What I am thinking is to somehow keep ties with your current employer so if you want to go back to work later on the avenue is there for you to do so.
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Old 02-10-2016, 09:50 AM   #26
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Caregiver, I admire your decision.

I recently took a leave of absence to care for my parent after an incident; and, it effectively ended my career. Even though I am still employed, that break (and, my distracted state before the break) effectively ended my career. I do not regret my choices in the least and hope you do not either. At this point, I am looking forward to the end of my employment so I can take a more active role in that care again.

Please do not forget to take breaks to care for yourself. I was only the caregiver for a few months; and, it took a serious toll on both my physical and mental health. This was not something I realized at the time, kind of like the frog in a cooking pot. Don't let this happen to you; [hopefully] you have a marathon ahead, not a sprint.
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Old 02-11-2016, 07:40 AM   #27
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Originally Posted by Caregiver View Post
Firstly, thanks for all the feedback. With all the inputs, I took a break to process all the advisement! Pardon the absence but it's been a turbulent time which has cooled off thanks to me stepping back and re-evaluating everything. Had a long talk with my folks and they both want to remain in their home long term and for a lack of a better phrase: until the end (with great respect). My sister will be living independently in one of my parents' rental units where she will be assisted 24/7 due to her disability. That said, my folks also indicated that they would like for me to oversee their care until they both pass. I'm their son and it's their wish. I am planning on calling it quits this April. In my profession, if one is out of work 6+ months chances are there would have to be steep concessions to get back in, if even possible. But, I'm going to do this because I want too. I''ll be 46 this year and between family health issues and work stress and travel, I made my choice. Parents have LTC costs and daily living costs covered and assets to be left for me to supplement my sister's future needs. Principle is not be touched as passive incomes more than sufficiently cover expenses. Reserves as a safety net are also in this cash flow model. Rentals: gross 90k per year excluding income and consequential costs. IRA and cash to conservatively produce 20k per year again gross. Again, principle not to be touched. Primary residence and rentals paid off and will not be sold. Ran it by accountant and he said things are fine based on my annual spend of $60k which includes care for my sister excluding taxes. Thanks again to all which help with my decision! This board is invaluable. Lord bless.
Caregiver; I may be wrong, but it seems as though you will be funding your own annual expenses, exclusive of the portion needed to cover your sister's financial needs, through your parent's rental income. Is that correct? If so that could be a dangerous move. Viewing your parent's assets as even partially supporting your needs would be a problem with Medicaid look back rules. Any money siphoned off for you and perhaps even your sister would be clawed back as I understand it when their money runs out and you or a nursing home place them on state aid. You state that their long term care needs are covered. How so? Actual policies? For both? How big is the benefit? Nursing homes/ memory care units easily cost $80,000/yr. As others have said the likelihood that none of the three individuals will need institutional care is very low, a fact that you seem to be in denial about. Sorry to say this. I also don't understand how you can provide 24/7 care for your sister for $20,000/year. This may seem indelicate but it seems as though you plan to take over their assets and then parse out the money as needed to care for all three individuals and yourself.
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Old 02-11-2016, 08:23 AM   #28
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Please read what GS just posted. My mom needed 24/7 care, and it cost about $5000 a month, or $ 60,000 a year. I believe your estimate of $20,000 is much too low.
I was caregiver for my wife for 12 years, and the thought of you taking care of 2 or possibly 3 people is frightening. My wife's father has Alzheimers, and the experiences she had with him before he was institutionalized were heart breaking and very stressful.
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Old 02-11-2016, 09:49 AM   #29
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Caregiver; I may be wrong, but it seems as though you will be funding your own annual expenses, exclusive of the portion needed to cover your sister's financial needs, through your parent's rental income. Is that correct? If so that could be a dangerous move. Viewing your parent's assets as even partially supporting your needs would be a problem with Medicaid look back rules. Any money siphoned off for you and perhaps even your sister would be clawed back as I understand it when their money runs out and you or a nursing home place them on state aid. You state that their long term care needs are covered. How so? Actual policies? For both? How big is the benefit? Nursing homes/ memory care units easily cost $80,000/yr. As others have said the likelihood that none of the three individuals will need institutional care is very low, a fact that you seem to be in denial about. Sorry to say this. I also don't understand how you can provide 24/7 care for your sister for $20,000/year. This may seem indelicate but it seems as though you plan to take over their assets and then parse out the money as needed to care for all three individuals and yourself.
+1 perhaps it's your writing style, but I am completely confused as to the source of of your individual support.

I think you very much have a bias to quitting work and caretaking your family and aren't giving much thought to the words of caution posted on this thread.
I'm not sure what extra money your DS will need, if she becomes involved with a state provided care taker and you or your parents get a rent payment from the state for your own apartment, along with state provided medical care where is the cost of her upkeep?

You don't have clue as to what might be down the road for your parents. When my MIL had severe Alzheimer's she completely flipped her days and nights and didn't even sleep much during the day. When her family finally consented to the nursing home, you couldn't even leave her alone long enough to go drink a cup of coffee. Plus, IMO the earlier you can place someone, the better chance they have of some kind of positive adjustment to the new situation.

Walk down the street and ask 100 people if they want to die in their own home or a nursing home and I bet 99 or more will say my own home.

Not to bring up a morbid point but right now you appear to have no one in your life to return the favor if at some point you need caretaking. I believe that you a nowhere near financially ready to give up your job with your own funds.

A note as to trusts and 5 year look backs, It's no longer a rubber stamp, in this state anyway. If they feel your intent was to transfer assets to avoid care costs, they will pursue recouping the out of pocket or just won't pay the nursing home bills in the first place.

Your last post seemed to say, I heard what you all said and my parents don't want to end up in a care facility so I'm going to forge ahead.

I hope things end well for everybody, but asking someone if they want you to take care of them so they don't end up broke in a nursing home being taken care of by strangers, is kind of a loaded question.

All the best, you have a difficult family situation and I applaud your kind heart. I in no way think that money or personal gain enters into the equation with you and think you want to get in and help and fix things, but sometimes things are not fixable by one person.
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Old 02-15-2016, 02:06 PM   #30
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I know in your heart you think you are making the right decision but even if you only care for 2 people you will burn out. It is much tougher then it sounds. I have already told my kids if I need care to put me in a home. Since I have helped out my Mom caring for my Dad and a few others I know how tough it is. YOu give up your whole life. I was not the primary caregiver and it was tough. My Mom totally sacrificed her own health and then when my Dad needed diapers he had to go to a home anyways and she cared for him for 14 long years. Have you really thought this through: changing diapers, spoon feeding someone, bathing them, etc. My friend that has Alzheimer's now and I put in a facility 4 months ago because I am her guardian she paces 24-7 and rarely sleeps. We are on our 4th drug trying to stop this but can't. Can you live with that happening and it is not uncommon. Most people with this disease are awake all night. They move things around constantly so you can never find anything. They often get paranoid and think people are stealing from them. It got so bad before she went into the home that car keys etc had to be hid because you could never find what she did with them. She would get up in the middle of the night and do this stuff while everyone was sleeping. I would do some research and also go to a support group for caregivers with this disease to get a good picture of what your life will be like.
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Old 02-16-2016, 09:51 AM   #31
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I remember my mother's last days. She took my sister and me aside and told us that she and Dad had agreed that they didn't want to place an undue burden on sis and me as their need for help with daily living became increasingly acute. Dad, bless his heart, looked after Mom so that she could spend most of her time at home before she died.

Six years later Dad developed dementia. He always had a bit of Barney Fife in him, which came to the forefront when his memory deteriorated (and often NOT in a humorous way). He could be a handful. I managed to keep him at home for about 18 months, but the situation was not good for either of us. Sis lived 300 miles away and couldn't be of much day-to-day help.

After we got Dad into assisted living, his blood pressure dropped from dangerous levels (thanks partly to Flomax) and he found a lady friend. The residential care took him out of isolation and placed him in a community. He was simply better off in that setting than he was at home with me looking after him.
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