Old 06-17-2013, 11:28 AM #1 (permalink)
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Default Long Term Skilled Nursing Home?

My dad (80) was just diagnosed by Mayo Clinic, Jax. Mom is 77 and both up until this point have been very fit, healthy and independent. Both have lived in Jax for 20 yrs. and have been patients of Mayo Clinic for many years and really have enjoyed Mayo's healthcare system. They are fortunate that they have an ALS Center in their hometown with all the specialties right there.

I live in Pennsylvania and feel rather helpless though I have spent alot of time researching everything and helping to put them in touch with proper resources, among other things, the local ALSA field office care coordinator who has been very helpful. My sister has a family and lives a few hours away from them. This has proven to be a bugger of a thing in terms of knowing what to do for the long-term care of dad, considering mother, the primary care giver is of advanced age which is going to be problematic because it seems to be a very physically-demanding disability. Right now, he walks with a cane to keep him steady but he gets around fine (sometimes uses a walker at home, too). Some fine motor skills issues which require help dressing, and mother bathes him in the shower.

We are fortunate in that they have financial resources for almost any type of care (including long-term healthcare insurance that my sister and I feel blessed they decided to purchase many years ago). Also, dad is in the process of getting the paperwork in for VA benefits which will afford him extra disability $$ to help pay for extra aide(s) while he would be in a long-term care facility. I'm told they would also provide better assistance devices (and better motorized wheelchair) than Medicare would provide. Even though he would be qualified to use VA facilities, I think they would like to opt to use Mayo for much of their healthcare.

Dad is making it clear that his concern is of the future of his sweetheart of 55 years in terms of the type of environment she would live once he's gone and some of these decisions where they would move to would impact her long-term residence..my sister and I are sensing that they would need to be in the city my sister lives so she could be available, along with her older children, to help out...prior to this diagnosis, they had planned to move, within a few years, to a small Christian community that they had been looking at in the town my sister lives (a small duplex with all maintenance taken care of)

Now we're wondering how valuable the Mayo will be in terms of any specialists he might need and if this can be replicated in Orlando, where my sister lives since I get the feeling they are feeling "safe" with the healthcare they are receiving. I'm reading how it seems ALS patients' needs are constantly changing and wondering what type of physician do you use as the "go to" doctor when all these things come up? If they move to Orlando, they would visit Mayo neuro every 3-4 mo. for checkups but what kind of doctor would they need in Orlando other than internist? Ugh..so many moving parts, this is frustrating and I want to do what's best for both mom and dad but not sure that there's an ideal solution. If they decide to stay near Mayo in Jax obviously there would need to have help brought in, but for how long and is this recommended when family is not able to support in an ideal way? They aren't interested in modifying the home for wheelchair access when the time comes and he is prepared to go into skilled nursing when the stress on mom is too much, both emotionally and physically. I need to mention that they have "troops mobilized" at church and other friends there, who are ready to bring meals and anything else they need though I know it's no substitute for family.

For those going through this, if finances weren't an obstacle, what would you do? And is it even reasonable to go through this without immediate family in the same town? I am prepared to fly down to do 2-4 wk. chunks of time and my sister could come up and do overnights as well, but I'm sure there will be alot of empty spaces in between...Help!
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Old 06-17-2013, 02:22 PM #2 (permalink)
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Default Re: Long Term Skilled Nursing Home?

Hi I am so sorry about your dad.

This is a tough situation. My experience was with 2 il parents so it was absolutely necessary that they be near a family member. Even with excellent resources and whether you choose inhome care or facility care there are issues that require hands on intervention. Your mom thank goodness is well and competent but things do happen and even with a healthy spouse they need support and help.

Moving away from support systems is hard but I think the sooner they move the more chance they can forge new connections before things get too bad. The hospital thing is hard too but most people only go to ALS clinic every 3 months or even less frequently. If they want to keep Mayo and find a really good internist in Orlando plus link up with the ALS Association that might work. Is there a VA near Orlando? They could go there and Mayo too. The VA as you say is a good resource for equipment etc

Good luck with all of this
Best wishes
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Old 06-17-2013, 06:19 PM #3 (permalink)
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Default Re: Long Term Skilled Nursing Home?

Here is my opinion worth maybe 2 cents.

If they are not interested in modifying any place for handicap access (wheelchair, toilet, and bathing in some fashion) and nursing home is the plan, then that probably trumps most other things. Find one that he will get the best care from.
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Old 06-17-2013, 06:47 PM #4 (permalink)
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Default Re: Long Term Skilled Nursing Home?

Does your sister live in Orlando? Is that where they were planning on moving? If so, I would suggest that move sooner rather than later while he is mobile. Mayo is great--but they are only the docs, not the day to day in the trenches caregivers. they can make the car trip up to mayo every few months and get most everything over the phone. your mom will need physical and emotional help, and the VA is great but family is better.

You are so lucky to be able to afford what ever is needed...I would personally think of a CNA in the house instead of a nursing facility. you could start with parttime home health aides and work up as needed to CNA and even full time nursing, or 24/7. I am just not a fan of nursing homes unless there is no other option. I have heard that the long term nursing care insurance will also cover in home care...
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Old 06-19-2013, 01:18 PM #5 (permalink)
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Default Re: Long Term Skilled Nursing Home?

Hi there and welcome. I am sorry you are going through this but having a good financial outlook will help a lot. I think that you will all have some peace of mind if your parents were closer to either you or your sister. I think even with an aide there will be lots to coordinate and doing it from afar may prove challenging and will sap some of the time you might have with your folks. I would personally rather have the time to care for my dad than spend it on planes or in a car. And of course, when emergencies arise, it will be all the more stressful.

I realize that traveling to JAX for appointments may prove stressful as well but if it's every 3 months it might be worth it.

I also think that it might be nice for your mom to have family support nearby if she ends up alone.

I'm going to friend you as my Dad is 86 and was recently diagnosed. We're in the process of finding him a place to live (assisted living, even if it is temporary). If I can help in any way, let me know. I'm so sorry you are going through this.

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Old 06-19-2013, 11:14 PM #6 (permalink)
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Default Re: Long Term Skilled Nursing Home?

If there is a VA Medical center near them, the only Dr they will need is a Primary Care doc. He can get all his meds through the VA, sent directly to the home. The VA will pay to modify a home, although it does take quite a while. With the compensation for Veterans at around $7000 a month, staying at home may be a better choice, as they could have 24/7 caregivers. Finding a good care home is close to impossible, as most know nothing about ALS.
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Old 06-22-2013, 12:07 PM #7 (permalink)
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Default Re: Long Term Skilled Nursing Home?

Thank you all sooooo much for your responses! You have no idea how much your insights have helped -- I have sent these all to my and dad to read. Every single one commented on the necessity to have immediate family close by and the difficulty in coordinating care long distance. Co-incidently the small community I spoke of in Orlando just notified dad that (2) duplex units have opened up and that the on-site skilled nursing facility said they felt confident they could deal with dad. Units there SELDOM come up, and dad's at the top of the list to contact, so don't know if God is telling dad this is where he needs to be or what! Care can be brought into their home from their facility until he needs skilled nursing. We have the option to transfer him to a place we feel serves his needs better with skilled nursing, should need be, but mother at least will be all set in a community that would be right for her and my sister would be within 15 min...

Jennifer, thanks for "friending me" and we will keep updated on observations on both dads, since they are similar ages. I am flying down to Jax around the 4th to tour the units available and to observe my dad's decline for myself, since it would've been about 3 wks. since seeing him last.

Thanks again for the help, and keep it comin'! Glad you all are here to count on!
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