90 and struggling. Is there anything I can or should do?

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90 and struggling. Is there anything I can or should do?

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My step mom and dad live in a loft in downtown LA. They loved their artsy lifestyle and can’t let it go. Dad is 94 with dementia, plus feet and hernia problem. Can ambulate briefly with cane. Is sometimes physically combative with home aide and step mom. He has a VA social worker. Threatens to throw himself out the window if anything changes in his care. Step-mom is 90 with Parkinson’s and CHF with difficulty walking. She manages my father’s care. They live on the opposite side of the country 3000 miles away. I have visited 1x per year for several years. Step-mom is getting sicker and has been in the ER and hospital a couple of times in the past 3 months. My dilemma is this. If my dad is left alone after my step mother passes or is hospitalized they cannot afford full time care at home at $500 a day. So he will have to be placed in a nursing home. I feel so badly about it because he will be combative and probably have to be wrestled and restrained. Even if I was there he wouldn’t listen to me. They have refused to move into assisted living or nursing care through the VA and now are at the whim of whatever bed is available at the contracted VA nursing homes. Is there anything I can or should do? I feel like if I don’t go out there to help him I’m a bad person. So much guilt, so little help.

Care Decisions Long-distance Caregiving Parents Skilled Nursing Facility

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Lymie, you don’t need to leave the forum just because somebody didn’t agree with your answer. People disagree with me all the time.

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But do they go out of their way to point it out all the time? I think that is what is becoming hard for lymie to swallow, it's not I disagree, it is you are wrong kind of posts. They do get very old, especially when it is the reading skills and comprehension of the poster making the snarky "wrong" comments.

Lymie has been around for a long time and I personally find her answers thoughtful and outside the box, which is tremendously helpful in dealing with dementia.

Thanks for shouting out to her, I would hate to see her leave because of this.

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Boehemic, say it louder so the people in the back can hear you!!!! REMEMBER NO CHOICE IS A CHOICE!!!! Thank you!! I needed to hear that too!! Perfect answer. My mother is 95 and is competent and still lives alone. However, she is a hoarder, a gambling addict. When she couldn’t drive anymore because her car died and she had no money to purchase another one, she started drinking every night. That was 3 years ago she started drinking. Doctors tell me she is competent and can live the way she wants. She wants to live home alone. No caregivers. So I am waiting for her to fall or waiting for her to be unable to walk. If she can’t walk and is wheelchair bound, she will have to get out of that house!! Until then, it’s her choice.

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Hillarious: I can see that I'm 4 hours late to post, but what I was going to suggest was to work with a social worker and I can see that you mentioned the Veteran's Administration social worker. Good luck.

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Hilarious while you may feel disappointment and frustration with their choices, you should feel no guilt about it with them tying your hands. All you can do is be available and enjoy as much time as you can with them. We don't always agree with our loved ones choices but we can't live their lives for them all we can do is love them for who they are.

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Hold his hand,Ask him as many questions as he can answer don't show him that you are worried or was its going to make him give up

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I think that there is not much you can do, given the distance involved, other than moving nearer. So be cheerful when you visit, and do not blame the (so far) happy couple for trying to live their own lives as they want! I understand about the dementia, my husband died of it last year, living at home until three weeks from the end. I am mid 70s, living alone but luckily near my family, but I would hate to have to move from my home - wouldn't you?
So - I think that you can leave it in the lap of the Gods, and deal with things as they happen; if they seem to make your father unhappy then do the 'smoothing brow' thing as a loving daughter should.
Most of the time there is nothing much that we can do to make the lives of our elders better, and if we are living next door, maybe that would not work out either!!

best wishes - from the UK

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I am a caregiver and understand what you are going through. It took me a very long time to accept that our Mother was in a different place. Once I realized that she was no longer able to make rationalized decisions about her day-to-day activities, and things such as handling her bills. My sister and I went to a Life Resources Attorney and had legal papers drawn up for me, my sister and my Mom. We contacted Social Services and had Mom diagnosed and the results came back that she was in the early stages of Dementia. I still did not want to accept it and kept trying to rationalize her actions. When she started to say and began to do things that were totally inappropriate and unlike her, we took charge in a loving way. She does not have money to be an assisted living resident, so we all "now" live together, and we have a caregiver come in, so we can work. WE HAD TO TAKE CONTROL! First thing is to make sure everything legally is in order and in place. If you have siblings, hopefully they will take an active part, but they may not and you will have to do it. It sounds like Dad has always had a strong personality, so Social Services can help you find the right place and medical team. You will and should check on him often, if he is in a state-sponsored nursing facility, and this means, he has to come to the area where you live, as 3000 miles is too far away for you to travel back and forth. He may surprise you once he is around other people who are dealing with the challenges of aging. Check in on him at least once a week and do ask questions of the staff. If he can come and visit with you on weekends, he may soften up some, but he is your Dad and you know him well, even when he is not quite himself. "Things Are-A-Changing", so everyone has to make adjustments, including DAD. It is tough, but you can do it. My prayers go out to you, your Dad, and your family. Aging with physical, and/or mental challenges can be difficult; but with the help of each other and available resources, we can all make it through this difficult period of our lives.

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Thanks everyone. I really appreciate the validation that I got. After hearing everyone’s suggestions I can see better what is ahead. I will call the VA social worker and see if she has started placement paperwork. If they don’t consent to me being POA I can’t set that up. So I have no legal responsibility for them. It’s better that way. When something happens and Dad or stepmom needs placement they will have to go wherever the powers that be at the time place them. I think I can safely step back and stop trying to “help”.

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These people are old and have too many problems. Why on earth should you endanger your life and way of living for a situation that will eventually destroy you and cause all kinds of hell. And with the behavior you describe, no one should ever under any circumstances tolerate that - I couldn't and wouldn't. Somehow they must both be placed into the proper type of facility. It is the only decent, sane choice. You have a right to live in peace. Don't get involved.

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Hillarious *love the username! :)* it's so tough to deal with a 94 with those issues and with a 90 also in decline. I'm sorry you're enduring these wracking feelings of ought to, should I? and will I?

It's encouraging to me to read of a VA social worker involvement because on my end, any VA help has been invaluable. Yes, it's slow going; I've used the Veterans Service Organization for 15 years now to expedite paperwork and they're most helpful re Spouse's case. I hope you find an office who might set your mind at ease. They might not give you particulars per their privacy rules, but mine gave me brochures re VA facilities nearby. My VSO person said the timeframe for move-in was anywhere from 6 months upward; I'd heard it was 2 years before speaking with him, so that was encouraging.

I've not used Patriot Angels, but they also sound good to contact. Most of all, the VA social worker has a vital role in whatever the future brings for your folks. Best wishes to you.

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First things first, become POA. Don't wait until one of them dies. 2nd get resource info about Health Locators or relocator in their area. They can assess the situation and take action with you involved.

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Sometimes good daughters can't do much more than standby and wait for the potential crisis. Some people in these circumstances couldn't afford to trek across the country. So, this is a regular apartment building with zero supports? You need a local connection to help guide you, and also if you haven't already, some legal guidance if they haven't yet done all the right POA and financial paper work. Where is stepmom's family in all this? Is she their responsibility, from a legal perspective? I'd be finding the local resources and connecting...if either is a risk you could also connect with adult protective services due to risk of neglect /self-harm...if they do not feel they are the appropriate agency, they will refer you to the right place. You're NOT a bad person, you're dealing with challenging personality(s) that you cannot control...unless one or both are declared incompetent...hence the need for a legal consult...so look for a certified elder law attorney, preferably one who works by the task, not the hour...try to do as much as you can from home so if you do go out your visit will be efficient use of your time.

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IMO dad already has a VA Social Worker, which means he is receiving his benefits, which he probably applied for himself. This tells me that he has taken charge of his life and is providing for his wife and has for a very long time. You only visit once a year, which Im sure is stressful for all of you because, as they age, it takes more effort to prepare for your visit. Personally, your interference would upset me greatly! I understand dad’s response to being forced to move. I don’t mean to sound heartless...but please don’t assume that dad has not prepared for some of their own future, and if he’s not invited your input, I would contact the VA Social Worker and make sure that she/he is aware of their situation and what the next steps are for future VA benefits to be applied. The social worker will be their advocate until they turn over POA to you. I know that hubby and I have made our own decisions for our future, have an elder lawyer, and all legal papers in place. We did not plan for our children to interfere and change anything for us. We have provided for them where we can, as parents do...I don’t think that in all situations our roles need to be reversed. Love your parents as you always have, from a distance, and keep in contact with his VA Social Worker. (((Hugs)))

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What ever happens, please remember that your folks, by not making any decisions and refusing care, they have already made their decision. Any fallout from that is on the. We had a similar situation with my MIL...we tried to get her to move to a smaller one story condo years ago. She wouldn’t budge. She fell and broke her hip last Feb, the option of where to place here were slim...but again, by refusing to make a choice, she made a choice. Hubby went up to clean out her house, etc. for 6 weeks. We moved quickly to sell the house, her docs said no more stairs, no living alone, but if it were up to her, she would have gone back. She crabbed about it this Christmas, even tho Christmas celebrations at her house were non-existent...hubby finally has let the guilt go. She made her choices, and he did as good as he could for her, give, the circumstances. Remember...no choice IS a choice.

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Excellent reply. I agree...we have to stop letting our parent's choices to not receive care or to not move rack us with "guilt" (which is not true guilt). They decided this was their boundary. And the chips will fall where they will. They will not be happy...but that is inevitable and certainly not the children's fault. I had to keep reminding my dad when he accused me of being the reason he moved into LTC...that "no dad, it was because you broke your leg and can no longer walk". End of discussion. Do not try to reason with them or argue with them.

(11)

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There are organizations such as Patriot Angels that speed up VA benefits. Use them. Worth every penny.

Do not allow your parents to manipulate you. You live far away. You deserve to live your own life. You are not going to move closer so you are doing everything that you can. Do not feel guilty. They need to cooperate and allow others to care for them in a facility.

Tell them it is no longer safe for them to live alone and you feel it is time for a facility because you are not going to be their caregiver.

Have you spoken to their doctor? Has the doctor spoken to them about living in a facility with a professional staff? Maybe start there.

Best wishes to you and your family.

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Are there other siblings or step sibling involved? If so I'm sure you know how important it is to communicate and try to be on the same page if at all possible. Of course making sure the legalities are in order as other have mentioned but getting to your main question; I would try focusing on the other with each of them. So with Dad have a talk with him about what would be best for step mom with her medical issues and with her focus on what would be safest and best for dad. Staying together is important for both of them and the best way to do that and make sure your dad has help if his wife is in the hospital say would be to live together in AL or IL apartment (I'm loosely speculating here) and for Step Mom it would be safer and easier for her with her physical limitations to have lifting help around, that sort of thing. I have often found that my mom will agree to things she really doesn't want to do for herself if it's tied to helping one of us (having a caregiver/companion come in 1 or 2 days a week to make it easier on my brother for instance) maybe it will be easier for each of your parents to accept help for the other over admitting they need it for themselves.

Maybe you have already done this but focusing on the fact that Dad earned/paid for his VA benefits and it is a waste not to use the benefits he worked so hard for to help both of them now would help? But an extended trip, as long as you can manage, to see them and deal with this in person is probably in order if you can swing it. Coordinating with any other siblings or step siblings if there are any so you can all be there at the same time would be great too and then you can all share the leg work and "business" of investigating options and setting it up. Ideally of course it would be best to find a place that has an apartment they can live in as well as a skilled unit (maybe even memory care unit) on site for when that's necessary to keep them together that has and caters to that "artsy" population they love but you can also kind of recreate it wherever they are since it doesn't sound like either one of them get out in the world much anymore. I know this is a tall order since it also has to accept VA benefits but you never know how many of these criteria you might find once you are on there, boots on the ground. Good luck I know this is all easier said than done.

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If other siblings wanted to help they would most likely already be doing so. So I wouldn’t depend on their help. Nice thought though. Most people don’t have an ideal situation like that.

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It is so sad to keep reading about selfish elders who did not prepare for “end of life” issues. In this case, yours are very needful of help but dont want to let go of their “artsy life”. You are not a bad person. You need to let that guilt go. Frankly, do what you need to do, with gritted teeth, And get them into the proper facility. And if anyone threatens to jump off the balcony tell them fine, go ahead. I called my mother’s bluff on such a threat and she hasn’t made it again. Whether or not your parents are combative is beside the point. Their decisions, their consequences. You get to live your life too, my dear. Best wishes.

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just wait till you are in your 90's! I wish that you had been more sympathetic to the 'oldies'!

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The process with the VA can take a long, long time. I would start the process now.

My guess is that based on their ages and health something will happen in the very near future. Start preparing for the inevitable.

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If he has VA social worker as the OP said, the process has been started and it’s not a long process in this state at all. He can go to any VA contracted nursing home at all timeZ the social worker takes care of it all. My FIL went to a VA contracted nursing home after having a social worker for only a few weeks.

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VA paperwork takes so long to go through the beaurocracy, I wonder if they could apply now for a VA spot and get it by the time they really need it.

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I'm so sorry for your dilemma...you are now part of a club to which no one wants to really be a member. It would be helpful to know if you have PoA for either or both of them? For your dad at least? Knowing how much actual control you have will help direct decisions. Do you have siblings that are willing to help in this situation? You may want to prepare yourself mentally, emotionally and financially for a trip out there to assess things in person. You will learn quite a lot this way. If you go, plan to be there for a week (services will be open: doc offices, lawyers, social services, etc). Bring PoA paperwork for their state, just in case (download inexpensive forms at Legalzoom.com or Rocketlawyer.com) If you know what their financial condition is, this will also be very important to decision-making. You might consider not telling them you are coming... Good luck!

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Before paying for forms I recommend going to the state attorney general website and see if they provide them free of charge.

These are legal in every way and site the statutes right on them. I say this because people (posters here) have challenged the legality of getting these forms this way. I used them for my dad and never had any problems.

Be sure and get a Durable general POA, this is more inclusive, I would also get the medical POA and the mental health POA. I would also find a HIPAA release that specifically says it never expires and is for any and all doctors, hospitals, clinics, testing facilities, et al.

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90 and struggling. Is there anything I can or should do?

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