Do we put my dad in a nursing home or keep him at home and risk spending everything?

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My mother suffered a massive stroke 12 years ago and suffered devastating physical consequences. I lived overseas but travelled home frequently 2-3 times a year for extended stays to help my father look after her. She finally passed away in January 2012 peacefully in her sleep. In 2010 I moved back to the US because my parents' situation was not getting any better. My employer at that time (a global company) agreed to a temporary transfer to allow me to work from our corporate offices and this allowed me to look after my parents. My father fell 2 months after I returned and broke his hip. He since has been able to walk again, has some minor health issues but does suffer from dementia. I do not live with him and arranged for around-the-clock care. I buy the groceries, pay the bills, arrange the staff, take him to doctor's appointments, etc but I don't live in the house because he is constantly called for me day and night and I can get no sleep and I must work. My father was a brilliant lawyer who apparently took care of everyone's business but his own. He had no burial arrangements for himself or my mother (which I've now taken care of), no insurance policy, no long-term healthcare plan. Nothing. My employer has now sent me a letter saying that my temporary contract is ending and I must report back to my place of employment by June 1st or lose my job (I'm in the meantime looking for employment here...good luck to me). What should I do? Stay? Go? Should I/can I force my father in to an assisted living facility even if he absolutely refused to go? Or should I leave him at home and spend every cent of money that he's set aside (which is quickly going) and risk having nothing if he does need to go into assisted living later? He's 89 but his family members have ALL lived extremely long lives (96+ years). I have an alcholic brother who is absolutely not help or support. Any suggestion anyone else who has been in a similar situation would be greatly appreciated.

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This is a classic case, so common among attorneys: a brilliant lawyer who took care of everyone's business but his own.

It is often difficult to help the person who was fiercely independent, and was so used to managing things for others. (My father was also an attorney, who slipped into dementia in his mid 80s).

But there can be some pleasant surprises. The person can realize how moving to assisted living, and then accepting supplemental help in order to stay there, removes a big burden from their daily living and opens up new opportunities for enjoyable interactions. (But the person is probably not going to admit that change of mind and heart to their adult child.)

How it comes about takes some courage and a few miracles. If I had more space, I would tell the full story of how my sister and I brought my Dad on a tour of the assisted living facility, and how he then just let us take care of the move. We faxed his health care proxy faxed over to the VA so they could get the health certification faxed over to the assisted living, and from there he enjoyed several years of daily bridge games and all the other amenities that gave us peace of mind.

It sounds like you are working alone on this. Have you considered a geriatric care manager? Getting more people on your team can help make more miracles happen. A GCM with the right personality could open up new paths to peace of mind.
If you have round the clock care already in his home, stay with that for now. In the meantime, research the nursing homes in his area, quickly. GO see them and get him "on the list." That's number one. The nursing homes will want some money . After you've done the research, you'll know how much it costs (varies in different parts of the country -- (we pay a whopping $14k a month! but only for two months). If they have a bed open and you're ok with the place, take it. Also solicit help from your local social services department. It comes down to money. If you can afford to keep him in his home with help, do that. We ran out of money so Dad ended up staying the NH after a short term rehab from which he never recovered. It sucks but that's the way it goes. YOU need to get on with your life. There are many of us out here that have devastated our own lives with care giving. I'm on the edge but coming around because I decided my life and my own family HAS to number one, not my Mom and Dad. They had their time. And I too, have useless, selfish siblings that haven't seen their parents in years. Take care of yourself first becasue no one else can do that for you. If you have any guilt, you'll get over it.

Now - if he does go into a home, you'll need to apply for Medicaid and that is an exhausting process, but has to be done and you'll be glad when it's over. There's a good thread on here about everything you need to think about including the 5-year look back. Search out. Good luck and stay on this site. It could save you. It saved me.

- SS
Personally, I would not give up my job. Having that income will allow for you as you live abroad (?) to pay for a geriatric case manager to oversee the whatever's for your dad. Being abroad makes for a whole huge layer of extra issues. Contact the Agency on Aging to see what's available where your dad lives for case managers or advisors. This site has a listing of all of them by state. Some of the "in home" caregiving services offer this service. this could be good or a conflict of interest - kinda depends on the company. If the AoA doesn't prove useful, many of the NH have a short list of geriatric case managers that out of state family private pays to check in on mom/dad, report back to you & go to the care plan meetings.

At my mom's NH, there is a "retired" RN who does this for at least 3 of the ladies on my mom's floor. If I wasn't a freelancer and can go in on the odd even though I'm states away, I would have hired her. $ 35 - 65 hr.

If you don't have the following done , you really really need to do these before U go
- Durable Power of Attorney (not just POA)
- Medical Power of Attorney
- Living Will &/or Advance Directives (DNR)
- Declaration of Guardian in Event of Incapacity
- HIPAA Waiver (umbrella/general one)
- Will or a Living Trust

The Declaration of Guardian is one that most don't have - this is really important to be done as it sets who mom/dad wants in her current & cognitive state to be her guardian(s) - once they get a dementia that can change on a whim due to their changing mental abilities. Like if they decide to take back the DPOA.

I'm a firm believer in having an elder care attorney take care of all this. It will not be expensive as most is done by the paralegals. You do want to go in prepared with the information for the documents (e.g. the residence located at 123 ABC street, aka parcel #5678; Ann Smith, wife of John Smith, with the info on all the births, deaths & prior marriages) as well as valid ID for the elder. If the decisions have been already made, this should all simple, straightforward paperwork. Should take 1 - 2 hrs for intake & then 1 hr a couple of days later for the signatures to be done.

If mom/dad has assets, then all this should be paid from their assets. This also is important if you or other family ever get challenged on who is DPOA or end of life issues. If you pay for all, and you benefit, then other family could go to court to find it a coerced document.

Many facilities will require the legal & DNR done in order to accept a resident.

As far as AL, try to look for a facility that is "tiered" - by that I mean one that has admissions from AL to NH and also does hospice. You don't want to have to move your dad, say 7 months from now, and have to find a place all over again....

I am DPOA for my mom and I forced her to move from her home into IL - as DPOA I could do this. She could not function at home alone, we had done the home health agency route too (she would lock the door, tell them to leave early, etc so they couldn't work as she didn't need them). I got her to have meal delivery and she went to a senior center X2 week with a van pickup.It seemed to be OK but looking back a lot of this was a show she would do for us when we or others would visit. The last straw was coming to visit unexpected and literally getting thrown back by gas fumes when we opened the kitchen door. Gas had been running for hours, there she was in her room watching TV. Oblivious. It was the stove's fault too. Then when my son went to open the other back door to get the gas fumes out, couldn't as the roof had an awning beam down and it was stuck AND the key was broken in the door. Again not her fault as a burglar did it. Put her on a couple of IL lists that afternoon and moved her in a couple of months later. She was major PO'd but it needed to be done. She did IL for a couple of years and then NH a yr ago. Not easy but you really need to go with your gut on what's best for both you and dad for the long, possibly super long, term. Good luck.
UPDATE....just to give everyone an update....I already had POA (health and financial from my father), HIPA, a will had been drawn up, etc. I consulted an elder care attorney and have since establish an irrevocabile trust fund for him with me being trustee. I also have removed every asset from his name (home, investments, bank accounts, ecc.) and have placed everything in the name of the trust. I have left him with one bank account in his name. He has also revised his will to make sure that I am the only executer thereby removing my brother (who is still an alcoholic and of no help, only a hinderance). The establishment of the trust and naming me the trustee does nothing to change the wishes in dad's will....my brother will still get his share but at least I don't have to deal with him to make any decisions once my father passes on and take care of business without interference.

On a happy note, I was able to find a great job here with my overseas employer. They realized they didn't want to lose me after all these years of service and really stepped up and found a great position for me. My boss is beyond wonderful.

I have recently purchased a home and am evaluating moving my father in with me once I get settled. In the meantime, I am continuing with his around-the-clock assistance and trimming back expenses where I can.

I will also investigate what financial aid/assistance I can get through the VA.

Thanks to all for your input. Hugs to all you caretakers out there.
I am so sad to read this. Your father was in denial it seems and did not plan for the future. Now it is your responsibility to take care of him, just not right. He should have set up trusts and made sure his children were not left with this problem. Do not give up your job. It sound as if the money will be gone anyway you look at it, unless he has an enormous amount. NH will be expensive and in home care will be expensive.

I feel for you, I know there must be deeper issues here. I have a daughter and son in law who are corporate lawyers in Boston. Lawyers should know what they need to do better than anyone. Of course, his expertise may be in many other types of law. But surely he had some idea about elder care and the problems of not planning. He made the choice not to do anything.

My mother is doing something sort of the same. I have tried to stop it before the time comes and the train wreck happens. She refuses to listen. So I will do what is best for me and just make sure she is taken care of.

Our parents expect us to take care of ourselves when we grow up but they need to take care of their business so their elder years are not a nightmare for their children. I hope it works out for you.
I would suggest investigating local memory care facilities in your area. There is one in our area that specializes in this. You may want to talk to your lawyer or a senior care specialist regarding finances. Is your father a veteran? If he served in one of the World Wars and was active for a time he may be eligible for veterans benefits that could help out a lot with the expenses. You will likely need to exhaust his assets to be able to get help. But, after that, you may find that monetary help is available from several sources. Don't give up your job. I say that because taking care of an elderly parent day in and day out can be very stressful for you. You need to get away from him for a while and make your own life. Our need to help our parents in a situation like this can be all consuming and very detrimental to your mental and physical health. Much better to leave his care to those that are trained in this field. You just need to find a good place to take him and check it out thoroughly before you move him there. He may resist, but in the end it will be the best for both of you. Good luck and God bless both of you.
fathibird - if your MIL qualifies for Medicaid, then her states Medicaid program will pay for the "room & board" and medical care (that Medicare doesn't pay for) BUT in almost all cases Medicaid paid for expenses needs to be done in a facility like a nursing home or skilled nursing facility. For the most part Medicaid doesn't pay for 24/7 around the clock care in a private home - which is sounds like what your MIL is needing. Medicaid is a joint federal and state program so each state runs their Medicaid program slightly differently so you should check to see what is available in your state before you take her out of the NH she is in now.

Regarding her SS checks or other income, if they qualify for NH Medicaid, then all of their income less whatever is their states personal needs allowance (this runs from $ 30 - 80 a month, my mom is in Texas and Texas has it @ $ 60 a mo.) has to be paid to the nursing home. She can opt to still receive the SS check and direct deposit it in her bank account and then she or you pay the NH each month OR she can have her SS check sent to the NH. The NH then deposits the SS check and places her personal needs allowance in a trust for her at the NH.

The NH trust $ is kinda tricky in that she has to spend it so that it never goes above 2K which would disqualify her from Medicaid. At my mom's NH, some of the ladies use their monthly to pay for going to the on-site beauty salon or for shopping needs that they can do at the "canteen" where they have inexpensive things like socks, hair barrettes, etc. You or whomever is her DPOA can go and take $ from her NH trust to buy things for her too. Most NH have a book that you sign in and say what the $ is being used for, like "new clothes" "cosmetics" whatever personal needs items she wants.

I would suggest you speak with the social worker & the care plan team leader for your MIL at the facility where she is now to see just how truly feasible it is for her to come home and whether or not you all have the ability to take care of her needs. Ask about how they are managing her bathing and bathroom needs. For bathings ask how they are doing it - if she is on a 3 person bathing team, then do you have family that will consistently be there to do that for the many months or years she lives with you. Is your bathroom set up for doing it?. If your MIL is a large person, it can be a big problem. My mom is petite and weighs maybe 90 lbs and can still walk on her own but she is on a 2 person bathing team because her dementia is such that 1 person has to distract her while the other bathes her. About the bathroom things, my mom can still go to the bathroom on her own during the day and her toilet is set up with attached to the floor grab bars. But wets or worse in the bed at night, so she is on diaper at bedtime which they check &/or change @ shift change at 3AM. If your MIL is incontinent, who is going to be there to manage this the 4 - 6 times a day? Most family and their living situations are not set up for dealing with someone who needs 24/7 care and don't realize what all will be truly needed to do it. None of this is easy. Good luck and please speak with the social worker @ the NH.
You are not doing your father any good by staying. Go back to your life. Just be sure before you leave that you have him situated somewhere where he is safe. If it were me I would get him into a foster care home with a family you line up now and know you can trust. He will get more idividualized care there. If he has dementia be sure that the foster home you find for him is used to dealing with memory care issues. if not-find a nursing home. Likely you will need a place that will take a spend down to Medicaid program. He will continue to spend his own money until he spends down to $2000 in his bank account then medicaid will take over. You need to set this all up before you go. Get him somewhere where he is safe and you won't have to feel guilty for having your life restored to you. Other than his knowing you are doing this to make him safe he likely won't remember anything for long anyhow with dementia. I hope this will help at least a little. In our town we have firms that will help you find the right facility for your Dad. See if there is a service in your town like this. Our's is called Living Right-I think it is national. They are paid by the facilities for helping them keep full so it does not cost your Dad anything.
oh, and since you do have round the clock care, hire a service to do the errands and the groceries. I just did that and it gave me huge freedom. Or set up PeaPod for groceries delivery. Then go back to work.

xoxoxo!
If you quit your job, where will you be financially when his assets are gone? He will be able to qualify for medicaid. You will be in debt without a job and no visible means of support for yourself. Keep your job and use your father's assets for his support until he qualfies for medicaid. Your future is a priority for your own senior years.

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