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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.

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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 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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If your close enough to go talk to dad yourself that's where I would start. Have a conversation with him, without your sister and let him know you are worried about your sister. Remind him of her medical/physical problems and let him know what your see, she wants so much to honor dads wishes she is overwhelming herself...and enlist his help in figuring out what could be done to help. Maybe her will come up with the idea he should move out maybe you will have to throw it out but at least give him the chance to "take care" of her before taking steps to force the issue. He may be oblivious to the strain he is putting on her and she may be helping to keep him in the dark about it by representing everything is great, no problem to dad.

Good luck, you are doing your part by caring for your sister and not just turning a deaf ear to her and I know she appreciates that and feels supported don't make the mistake of thinking this in any way is your fault for not taking him in. We all make our own decisions.
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Favreon May 2019
this was one of my first thoughts, that maybe I, without her knowledge, have a sit down with dad and explain what is happening to his daughter. I really think he would think differently if he knew how it was impacting her and her mental frame of mind. Thank you
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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 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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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 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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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 2019
Thank you
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I just want to commend you for caring about her well being, because I am looking after TWO parents in their nineties and my family could care less. They tell me what a terrible life I have - and do nothing to help. If you can get him in a nursing home for respite, that would give time to sort everything out and let sister get some needed rest.
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NeedHelpWithMom May 2019
Some assisted living facilities have respite care too. Check around to see what suits them best.
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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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The decision to go to Memory Care is not one that Dad can make.
For his safety and for your Sisters safety, mental health he needs to go to Memory Care.
This is probably no longer an option but a "have to".
He will get used to Memory Care...he may say he hates it, wants to go home, they are trying to kill him, they are starving him whatever. All you can do is say that you love him, and want to keep him safe.
Your sister is in need of a break and while respite is wonderful after a week she will be back in the same spot mentally, emotionally, physically.
the other option would be to hire caregivers that would come in and do what your sister has been doing.
So time to get out the piece of paper (I'm old school) and list the pros and cons, the cost of hiring caregivers VS Memory Care, the future of his safety making renovations (If they have not yet been done) so that he can be safe(er) VS in Memory Care where there are wide halls, accessible bathrooms, no carpet and all the other stuff that does with that.
If he is a Veteran the VA might be able to help with some things. Would be worth looking into.
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Karsten May 2019
I thought the mind was not an issue, just physical. Why go to memory care if mind is not an issue? Assisted living would suffice.
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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 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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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 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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My mother spent the last 5 1/2 years of her life in a wonderful local nursing home, and those years were far happier and healthier for her than the 25 years that preceded them.

I presently serve as POA for my mother’s last living sister, who is living quite comfortably in the Memory Care/Assisted Living section where my mother lived.

Perhaps you can help your sister a bit by researching what facilities are available locally that meet your dad’s needs. If you do a preliminary drop by visit, you may find something welcoming that will help her to consider placement as a better alternative for both her AND Dad.

How fortunate your family is to be close and mutually supportive!
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Favreon May 2019
Thank you!
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You have already gotten great advice, but in reading your post, it says dads mind is sharp, so I do not know why folks are talking about Memory Care.

It sounds like your sister was right on in wanting to place your dad in AL. Since he has physical support needs, carefully investigate what support all facilities will and will not do to ensure a match. Be sure there are sufficient Male residents to provide companionship.

Also, if your dad needs assistance quickly, know that AL may not be the complete answer...response time to a call button can be up to 15 minutes. Determine the level of care he will need...and whether he would still need an aide just to help him. Some places offer this as an extra service, at some you need to hire an outside agency.

Be prepared for lots of complaining...and have a strategy for dealing with it.

As others have said, you are a great brother!

Good luck.
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Favreon May 2019
2 1/2 years ago AL would have been no problem. However today, I'm not sure he would be safe on his own. Our local facility, which is very nice, has a separate unattached condo area, an attached wing of AL, and the nursing facility. \as mentioned, it could take a bit of time to get help in the AL wing.
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Favreon, as he teetered on the brink that time before, but something put him off - any idea what? - how about suggesting a trial stay?

I don't know if any of your chosen facilities do this, but I believe it's not uncommon for them to agree to a probationary period with an option for permanent residence thereafter.
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Favreon May 2019
Don't believe a trial is an option, as space there is many times maxed out.

I think he believes he has more freedom in her house vs the nursing home. But we both feel he would really enjoy having more friends available to visit with. You can count on one hand the number of visitors he's had the past 2 1/2 years.
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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 2019
Thank you for the suggestion.
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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 2019
Well said. Thank you!
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Sister probably needs your intervention with dad, telling him exactly what you have told us - that she loves him and won't tell him directly, but she is at the end of her rope and needs him to accept help from people who can do it without harming themselves.
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I agree with Barb 100%. I think u should talk to dad without sis there and just be 100% honest about the situation. He needs to know how this is affecting her. If he's the type of person who likes to be in control, leave 2-3 AL brochure's in his room to "find". Or give them to him and tell him he's got 3 days to make a decision. Ur sis is crying out for help. As long as u continue to let him make the decisions, this will not only continue, but get worse for sis and him. He may need medical attention she cant provide. Its so much healthier AND SAFER for him to live in a nice, comfortable apartment with ppl his own age, with activities and nurses for when its needed. Im definitely no expert but i can imagine the depression, anxiety and STRESS ur sister is having. I hope everything works out for EVERYBODY. and dad might be mad and hate AL at first, but he will make friends and get comfortable and be happier. The way things r now has to end, its not fair to sis.
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Also- our parents still view us as "kids" so in their eyes we're still young, no health problems and unlimited energy. So he may not even realize that sis is exhausted!
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I am I am in a similar situation but my sister is the primary caregiver of my 96 year-old father who has advanced Alzheimer's. I have a progressive neurological disease and can barely take care of myself. I don't know what your father's Financial picture is or if he even qualifies for some Medicaid but if he did he would be able to get caregivers to come in and basically help out. Unfortunately we don't qualify for any of that and my sister health is taking a toll but my father is in such bad shape now that my sister will not put him in a facility so I do all the paperwork and everything else related to him and she takes care of him with part-time caregivers but I Can Tell She's burnt out even though she's a thousand miles from me. If your sister lives in the same town or whatever and you might not be able to take your father but I'm sure you could go over there for a weekend and let her go stay in your house where she has some peace and quiet. Because you need to have some options until you decide what to do and they do have respite care in some nursing homes even for a week or two that my give her the time to decide what to do because no Assisted Living place is going to take your father if he's falling etc because right off the bat they will say he needs to be in a nursing home and I don't know if your sister is going to put them in one. So while you're thinking of this get him into respite care for a week or two and have her tell your father that she has to go out of town for something very important for a week if something like that and see how he does the week she's gone. Then try to start going over there and spend some time doing some things for your father so she is in the primary caregiver solely. Check out Medicaid to see if he is eligible for that. There is no easy answer and my sister has been extremely frustrated years she's been doing this because it's been about 4 years since he got really sick and my father was always difficult and getting Alzheimer's hasn't changed that except now he's basically bedridden and doesn't remember anything. I told my sister countless times that she should make the decision if she needs to place him because I'm not physically capable of taking care of him but my sister is a physician's assistant and I think she feels like she made a promise to my father and just can't do it. I hate to say it but the only good part about this is my father didn't get sick until he was in his early 90s. I can imagine if he would have been in his 70s and you're looking at maybe taking care of somebody for 20 years. The reason I'm saying this is because your sister might not the able to let him go in a facility so if that's the case you need to just provide some more care and stuff for him so she can take a breather
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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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Is there a group that she could join that would help her vent her frustrations and see that she is not alone?  How about switching out some time with her?  Use your vacation time and take him off of her hands for a few days?  I am an only child and I have no one to help me.  I have been doing this for 3 1/2 years.  My mom is in a facility and I think about how I don't know how much longer I can do it alone.  I am jealous of everyone else having brothers/sisters/children/grandchildren/spouses who support them in ways that I don't have access to, but I mush on knowing that I won't always have my mom, and when she is gone, then it will end.  At least I know I have done my best and tried.  My mom didn't want to go to AL either, but she could no longer live alone safely, so I had to make the decision for her to move using the court system to help me with this.  I am her court appointed guardian as well as her POA.  Her diagnoses justified this decision.  Sadly, it was tough to do, but the correct thing to do.
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So many good answers from many who have dealt with similar situations. I appreciate all of them. It has given me some good ideas on how to proceed to help her out.
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Hire help to stay with him, or assisted living. He needs to live in a safe place that truly will help him NOT decline. At this point he needs to be moved into long-term care, since assisted living has closed doors and might be too closed-off, since it sounds like his caretaker is physically within feet/eyesight of him always. It's no longer his decision. Assisted living, is possibly the safest solution? Hopefully a brand new facility is located in your area?
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When mom was diagnosed with dementia, three different doctors told me she should go into AL. As mom lives in a retirement village, and has a dread fear of the assisted living or memory care area, I gave her a choice of two options. 1. She moves to assisted living. or 2. She agrees to caregivers in her home. She was quite (and I mean "QUITE") angry and resistant but I showed her the test results and the doctors recommendations and told her she did have a choice - AL or caregivers. She chose caregivers as she did not want to give up her apartment.
As with children, don't get angry (though it is hard not to, for too many reasons to get into now) you just give them a "choice" of two options that work for you.
Please understand that this is way too much for your sister to handle and the stress on her can cause irreparable damage.
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I hope your sister finds help very soon. I had thoughts of suicide but knew I could never do that, however, at that time I wouldn't have cared if a tree fell on me. I was exhausted and completely on auto pilot. I developed stress related blindness in one eye. Finally getting hospice on board helped, but the time before that was rough...always trying to rehab mom who knew she could not get better.
Taking things one day at a time got me through, but I still suffer from it 3 yrs. later as I was thrown back into caring for MIL when my husband's only sister and sibling died. Luckily I got my sight back with surgery. I am still dealing with anger issues at people who didn't know what I was going through. I guess that is PTS. I hope your sister gets the help she needs fast, so there are no bad feelings for years to come as an additional bit of fallout from stress. I will always have blurry vision in one eye as a hard reminder of what I went through.
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bigsun May 2019
Thank you for sharing
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I think so many times we feel responsible for our parent's happiness and that is where these promises come in to keep them at home. It sounds like from the advice given that you will place him somewhere because there are two reasons: your sister’s mental health and his safety. Bottom line!
ive been there where your sister is...wanted to run away, didn’t care if I woke up the next day.
Encourage your sister to see a therapist who can help her process what she feels and how to care for herself. He will be in a facility but still it can be very stressful.
I do hope you will visit your dad on an ongoing basis even though you work. She will still need your support. I am the only one of 4 daughters living here so it’s like I’m an only child. I so wish others could visit my dad so it wasn’t all on my shoulders.
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katiekat2009 May 2019
Keep in mind, also, though sis will not physically be taking care of dad, her mental state won't "snap back" overnight. She will then likely be dealing with the guilt of having put him into a care facility. It just takes time (and support).
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I think that's a good idea.
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It seems to me that your dad no longer is capable of grasping and understanding how caring for him is sapping the life out of your sister..It isn't selfishness. It is just part of aging.....I suggest a lie be told. Tell dad that the doctor wants to observe him closely for two weeks and that will require a temporary stay in a room with 24 hour a day attendants....He will likely object...Do it anyway. If his signature is needed at the nursing home, either have the POA (if one exists) sign it or somehow get him to do it for only "two weeks." Talk with the admissions person prior to taking him there so as to have him/her into the scheme.

As the two weeks wind down, say the doctor needs a little more time and so we can't go home just yet.

It is a ruse, I know, but sister is beyond her capacity to absorb more stress.

Grace + Peace,

Bob
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jan135 May 2019
great idea! I may use it for my mom and say it's a hospital. She's in a retirement home but definitively needs more care.
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If you haven’t, take your father to the facility. Explain and show him the activities, events etc. Some think of ALFs as the old drooling , restrained people constantly in beds, urine smells etc. As much as my mother threw fits about going, she loves it now even though she won’t admit it. You are putting him in a safe comfortable environment not a dirty hole.
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Lostinva May 2019
Thank you for your comment!! You are so right!! I visited several seeking one for my mom. There are hell holes out there but the majority are quite nice!! No more lining them in the hallway in a w/c!!! They are kept busy with an activity director!!!
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Although you have gotten a lot of good advice for long term move to AL, if resources allow I encourage you to schedule some IMMEDIATE in home care (12-24 hours a day for at least 3-5 days) and provide your sister a brief respite. You would be amazed at how much impact just being able to get a good night's sleep and take a nap without listening for your elder can make on your mood and ability to cope.

My mother recently transitioned into needing full time care/supervision after living in my home for several years with minimal help needs. For the first 4 months following my mother's fall, I provided all the 24/7 direct care thinking this would be a short term need until she recovered from the fall. When I accepted that she would need more ongoing care I reworked things to setup a sustainable care plan.
(1) Used the Area Agency on Aging to find an adult day care my mother attends for 6 hours 3-5 days a week. This gives me a block of time to myself with limited worry for my mother (still make sure the cell phone is within reach) where I can work on projects without interruption, have my own appointments and luncheons or even just catch up on my sleep. I really cannot overstate how much of a impact these few dependable hours a week reduce the stress of being constantly "on-call". Even though my mother doesn't need a lot of constant care, she does need someone to be available constantly; that seems to generate a lot more stress than the actual care giving tasks.
(2) Arranged for some in home care hours each week I use when I want to go out for some family/friends function outside the day care hours (like the grandkid's ball games). Currently these hours are privately arranged and I use a payroll service so all the right taxes are collected; also purchased additional liability insurance in case someone is injured while providing care in my home.
(3) Made a list of things my back up care giver (my aunt) would need from my home if she is called into service because I experienced some incompassionating personal issue (like a car wreck) and discussed it with her. When we talked I discovered my aunt had already purchased a lift recliner for my mother to use during her visits there.
(4) Made applications to a couple of good MC facilities in the area and got approved for respite care with an available bed. If I cannot provide care for a couple of days to a couple of weeks and my aunt is not available either, I have a couple of options to place Mom temporarily.
(5) Set up an as requested/needed contract with a local in home care agency I used previously with my father. Although I have several resources to care for my mother with little to no notice for a few hours, this contract makes sure I could have someone at the house before any of those resources would need to go to work the next morning.

AL is not the only option if you and your sister are willing to work out a plan similar to the one I did that provides both good coverage for your father's care and your sister with enough respite that she can still have a life beyond care giving. If the three of you (sister, father, yourself) cannot build such a plan then AL/MC is most likely the best choice.
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Lostinva May 2019
I don’t know what state you’re in but I arranged a senior day care for my mom, it was the perfect solution for me to have my own time but after just 4 visits they called & said she couldn’t come back because she wasn’t independent enough, she required assistance. For her to go to one where that didn’t matter, it was $85/day!!
Having strangers in my home doesn’t appeal, I’d feel I’d need to still be here which is no respite here. I did find an AL that does respite care so mom is going there for 10 days while we take a vacation. Thankful for the little things at this point!!!
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