bunkerhillbroad
New member
- Joined
- Jun 17, 2013
- Messages
- 5
- Reason
- Loved one DX
- Diagnosis
- 05/2013
- Country
- US
- State
- PA
- City
- Pittsburgh
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!
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!
