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2 1/2 years ago, about a year after our step-mother passed away, it was evident dad couldn't safely remain in his house. Physically he was deteriorating, but his mind was sharp as ever.


My sister (68 now) had a place worked out at Assisted Living for him, but at the last minute he said he didn't want to go. So she ended up putting him up in a room in her house.


Over time it has grown to be too much for her. He is starting to fall a bit more frequently, and it is difficult for her to help him as she also has some lingering health issues (bad knees among them).


My wife and I both work FT, and don't have room in our house for him, and honestly could not do what she has done for him.


Every once in a while my sister will text a vent, but today when she texted, it really concerned me. She mentioned thoughts of suicide or disappearing (which she said she knew she couldn't), but she felt like she didn't have a life.


She has said dad says he never wants to go into a nursing facility, but I know he wouldn't want her life ruined.


I think we need to sit down and explain what this is doing to her, and see if this has an impact on his thinking about being relocated to a facility.


Open to thoughts, ideas, etc from those that may have gone down this path already.

She needs for him to be in respite, immediately. This is no longer about what he wants. It's about what she can/cant do.

You need to figure out a way to get dad an evaluation of his care needs. Call his doctor, the Area Agency on Aging and find out how to get this done quickly. Dont hesitate to say that your sister is having thoughts of self harm.
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anonymous903302 May 23, 2019
Great answer, Barb.

But, not sure that I would tell anyone that sister is having thoughts of self-harm. Just say that she is exhausted and needs a break; to recoup and to focus on what the best long-term steps are for Dad. Then beg sister to go talk to a psychologist and her PCP.

Also, to the OP: when signing the papers for "respite," make sure that you make it 100% clear that it is "respite," and that the intention at that time is that your Dad will return home. My experience with respite is that it's no more than 30 days; after that, at least where my mother went, you are forced to sign on to permanent and pay a rather large community fee. When you start, just pay for a week, or maybe 10 days, and get a copy of the check and a receipt.
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Faveron; It no longer matters what your father wants or thinks. (Well, it does, but leaving things as they are is no longer one of the choices)

You can give him choices of two facilities, but living with your sister is no longer an option as in "that's not one of the choices, dad; you need more care than family can give you now".
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I am with your sister there... I am 56 and my mother 79.....while there are no intentions of suicide, the thoughts have come as well as the thoughts of disappearing. And like your sister, currently, I do not have much of a life as my mother has taken over... how? I have no idea.

So far, my saving grace, has been a group of wonderful friends, going for walks with my dog and my faith. While I do not want to hurt my mother in any way, shape or form I may find myself having to make a decision whether I need to detach myself from this situation as it is affecting my health -I've developed fibromyalgia- which the doctor says it is more than likely stress induced.

Please speak to your sister and let her know that she is not alone. There are many of us out here....

Broken Daughter
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Favreon May 23, 2019
Thank you, you are in a similar situation. We messaged each other several times yesterday, and just knowing someone was there seemed to help, although that is just temporary. We still need to move forward with a solution to get her life back for her. Best wishes on your situation.
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Favreon, I have noticed that elders that are of your Dad's generation are terrified of "homes" because they remember when they were children or teenagers, what happened when an elder relative needed to go into a "home". Back then, pretty much all that was available were county asylums, which were difficult because medicine back then didn't understand someone who had memory issues. Thus, that person was placed with others who had serious mental health issues.

Of course, that isn't the case in today's world. Modern medicine has advanced and so has nursing homes. We now have "Assisted Living" which in many places are more like living in a hotel.... having meals in a restaurant style dining room.... everyone having their own private apartment, etc.

Has your Dad ever visited an "Assisted Living" facility? He might be pleasantly surprised. After my Dad visited a senior facility, he was ready to pack and move in. He couldn't wait to be around people of his own age group [also in his 90's, still was sharp, but a major fall risk].

When living with a parent to be their caregiver what happens is the adult/child dynamics. Your Dad still views your sister as a much younger person who can still do everything. My parents did the same with me.

Please note that up to 40% of family caregivers will die leaving behind the love one they were caring... those are not good odds. Then what? Then Dad moves into Assisted Living, but your sister is no longer around :(

Like your sister, I was ready to drive my car off a bridge because everything became so overwhelming, and here I wasn't even hands-on, but logistical. And here your sister is doing both.

For those parents who dig in their heels and refuse to move, usually we have to wait for a serious illness or fall to get the ball rolling. It goes 911, hospital, rehab, Assisted Living, or in my Mom's case Long-Term-Care.
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NeedHelpWithMom May 22, 2019
They are like hotels. Some are lovely, plus I think it’s good to have a social life with others their age.
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Please help your sister. This has gone on for over two years already. She's been reaching out (those texts) and now it is at the point where something MUST be done. Has she been doing this on her own or are there other caregivers?

If your dad was going to go to assisted living, then I assume he can afford to pay for care. Figure out what the quickest way to lift this burden from your sister will be -- possibly hiring someone from an agency at least temporarily, so that she can step away.

Then getting him evaluated to see whether he can still do assisted living or whether he needs skilled nursing. And then get him moved. Whether he wants to or not. He cannot stay where he is and impact your sister's health this way.
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Favreon May 22, 2019
I agree he should be evaluated to see if he would be OK in Asst Living vs the nursing home wings. And yes, that is why I'm seeking ideas so I can help both of them. Thank you
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You want a two-pronged attack.

The obstacles to your father's moving into a good facility are

1. Your father. Heaven knows what he is imagining, but I would suspect that his mental picture of a facility is grim, whereas the reality must be much nicer and with better, more skilled care than can be offered at home.

2. Your sister. She is letting the tail wag the dog - by allowing your father's uninformed, vague aspiration "never to go into a facility" to be the key factor in the decision, when it should be one among several options up for assessment.

So. To tackle #1, first short list your facilities. Go and visit them. List their comparative advantages, including for example: trained staff, professional leadership, equipment and adaptations, peer group company, accessibility for visiting, quality of environment etc. Stop your father's "horrible imaginings" by having real examples to show him.

At the same time, spell out for him the disproportionate impact on your sister, the injury this is doing to her, all for fear of what? You and your sister are not going to dump him in "a home" and vanish. You will be providing him with high quality care that will allow you both to maintain full contact with him.

#2 - you could consider referring your sister to us on the forum! She would be most welcome. But just by caring about her, and having listened, and giving real thought to practical answers, and being prepared to step up and be the Bad Cop, you will already have made a difference to how she feels. You are a first rate brother and son. Good luck and keep in touch.
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Favreon May 23, 2019
You summed up pretty well exactly what happened 2 1/2 years ago. My sister had taken him through the facility, and he seemed Ok with it, but at the last minute informed her he didn't want to go that direction. So she let the "tail wag the dog".

Everyone has laid out some wonderful ideas. I feel I need to be honest with him and let him know the impact he is having on her life, and it may be what the doctor ordered. His mind is still perfectly fine, which is a blessing (unlike my wife's mother, who has aggressive dementia and had to be put in a secure Memory care facility), but he tries to use that to his advantage.

Dad did show us he could be rational about a month ago. We were planning on having the "We believe it's time you give up your car" discussion. However 3-4 days before we were to have this talk, dad informed her that he felt he shouldn't be driving any longer.
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One way to look at the problem here is that your father thinks that the decision about alternative care is his to make. Your sister is going along with it, so are you, and so are some of the posters. Explaining the damage to your sister may not work to change his mind, either because he can’t see it or because he puts his own preferences first. You and your sister will both have to change the conversation so that it is not his decision to make. Instead of building him up, you need to knock him down by withdrawing the current option. Your sister needs to say clearly that she can’t and won’t cope, and he will have to work out what he wants to do that doesn’t involve either of you in hands on care. The alternative is for her to go on until she really does collapse, when he will certainly go into care anyway. She needs to stop while she can still get a life back, and when she stops it will force the issue. It’s clear that you both love your father. The best thing you can do for both of them is to put some backbone into your sister.
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First of all, I am sorry for this situation. Secondly, I can relate to your sister and I truly appreciate your concern for her and your dad.

I have two brothers that are barely involved in my mom’s life or mine. So, from the bottom of my heart, I thank you. I have cared for my mom with Parkinson’s for 14 years in my home.

Your dad cannot be alone. Your sister is burned out and has health issues. This is a necessary placement. He will adjust and everyone can visit him. Take care and best wishes to you and your family.
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Favreon May 23, 2019
Thank you
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Favreon,

You can consider your sister’s text as a cry for help. She might dismiss it later when things calm down as just venting, and she may be right, just saying it might have made her feel better, but for her sake, I would take some definite action to change the arrangement. Thoughts of suicide (finding a way out), or disappearing might never be acted out, but I think people under great duress manage to find other ways to subconsciously kill themselves to remove themselves from the situation, such as self-neglect or self-medicating.

I loved the idea from john about having a social worker ask him the hard questions. Don’t be surprised if your father can’t be made to see reason. It would be lovely if that were to happen, but I suspect that your father is in a self-preservation mode that is blind to the suffering of others. He
feels more comfortable at home, and doesn’t want change, and I can surely understand that, but his desires don’t necessarily get to be realized at the expense of someone else.

My parents are both in a nursing home. I’m sure this was never in their life plan, but after taking care of them for 16 years with increasing levels of care my siblings and I decided that this was the choice we had to take. Our physical and mental health depended on it. We thought we could keep them home until they passed, but we, and they had to change our ideas on what we wanted with the realities of life. You were right to take your sister seriously.
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Favreon May 24, 2019
Well said. Thank you!
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A good social worker (for us it was the hospice social worker) can ask the hard living-will-directive questions - “should something happen to your daughter where she is unable to care for you - what is your choice for care?” he might complain and refuse to answer - “we’ll, it’s better for YOU to make the decision NOW while you still can, rather than have someone else making the decision for you!” - a good social worker exchange like this is needed. It will be recorded and trust me - hospice care social workers can have these difficult conversations better than family members. Finding the right one is your goal.
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Favreon May 23, 2019
Thank you for the suggestion.
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