Only child with aging parents far away
November 12, 2012 6:43 PM Subscribe
How do I take care of my aging parents long distance? I'm an only child with small children of my own and feel alone in this situation.
My mom has just been diagnosed with Parkinson's and dementia, and my dad, an attorney, is having difficulty with the idea that he will have to retire and care for her. He wanted to do things "for himself" in retirement and now feels frustrated with the situation. He is very hesitant to hire help, because they have very limited money and he wants to protect it from Medicare.
I feel very alone in this. I am a five hours' drive from them, and my father's and mother's siblings are unable or unwilling to help.
My mom has just been diagnosed with Parkinson's and dementia, and my dad, an attorney, is having difficulty with the idea that he will have to retire and care for her. He wanted to do things "for himself" in retirement and now feels frustrated with the situation. He is very hesitant to hire help, because they have very limited money and he wants to protect it from Medicare.
I feel very alone in this. I am a five hours' drive from them, and my father's and mother's siblings are unable or unwilling to help.
Response by poster: My dad is 68, my mom almost 71. We've noticed the dementia for about 2-3 years, and the Parkinson's was recently diagnosed, although the symptoms were there for at least five years. A few more details: my mom no longer drives, and they don't have any close friends in the city where they live (45 minutes from Cleveland, Ohio). Their few relatives in town are all 45 minutes away.
posted by percor at 7:22 PM on November 12, 2012
posted by percor at 7:22 PM on November 12, 2012
Response by poster: Neither of them are veterans, and they haven't done much financial planning. My dad has long-term care insurance, but my mom doesn't because she failed a memory screening when they were trying to qualify (waited too long).
posted by percor at 7:28 PM on November 12, 2012
posted by percor at 7:28 PM on November 12, 2012
Sounds to me as if the responsibility is mostly your father's. He is relatively young, and unless there are things you aren't telling us, perfectly healthy. Right now your responsibilities are mostly your young children. Later on that might change, but not now.
For that matter 71 is not that old either, and I am so sorry your family is dealing with this.
posted by St. Alia of the Bunnies at 7:32 PM on November 12, 2012 [1 favorite]
For that matter 71 is not that old either, and I am so sorry your family is dealing with this.
posted by St. Alia of the Bunnies at 7:32 PM on November 12, 2012 [1 favorite]
You should encourage your father to consult with an attorney who specializes in elder law and/or Medicare law. A skilled attorney can help to ensure that your parents get all the assistance they're entitled to for your mother, while making sure that your father doesn't end up destitute down the line.
posted by decathecting at 7:33 PM on November 12, 2012 [1 favorite]
posted by decathecting at 7:33 PM on November 12, 2012 [1 favorite]
Response by poster: They've seen an elder law/Medicaid attorney and are planning on putting into place an irrevocable trust. That helps put me at ease in terms of the money issue, but I'm more concerned now about the fact that my mom seems depressed and isolated, and my dad doesn't really seem to want to take steps to help her. I think he may be in denial about the whole situation. He lets her do everything around the house- cooking, cleaning, and carrying laundry up and down stairs. Even though it should be his responsibility to care for her, he doesn't seem to be up to the challenge.
posted by percor at 7:39 PM on November 12, 2012
posted by percor at 7:39 PM on November 12, 2012
Thanks for the additional information.
Your dad needs to step up to the plate on this, even though it means his wanting to do things "for himself" may not happen at this moment.
It sounds like he's acknowledged the financial piece with the trust, that's significant.
If I were in your position, I would encourage them (him, specifically) to meet with a social worker that specializes in geriatric issues to help him understand his place in this situation and his role moving forward.
As far as your responsibility, at this point I don't think you need to step in, your dad is capable and should be taking care of this. You might want to seek some advice as to what it might mean down the road for you, as your father's ability to cope with her illness becomes less effective.
For what it's worth, this opinion comes from someone who is 64 and has seen more than one family member face this situation.
Hang in there... It is hard to watch this happen, be loving, be kind, and take care of yourself in this process.
posted by HuronBob at 8:04 PM on November 12, 2012 [2 favorites]
Your dad needs to step up to the plate on this, even though it means his wanting to do things "for himself" may not happen at this moment.
It sounds like he's acknowledged the financial piece with the trust, that's significant.
If I were in your position, I would encourage them (him, specifically) to meet with a social worker that specializes in geriatric issues to help him understand his place in this situation and his role moving forward.
As far as your responsibility, at this point I don't think you need to step in, your dad is capable and should be taking care of this. You might want to seek some advice as to what it might mean down the road for you, as your father's ability to cope with her illness becomes less effective.
For what it's worth, this opinion comes from someone who is 64 and has seen more than one family member face this situation.
Hang in there... It is hard to watch this happen, be loving, be kind, and take care of yourself in this process.
posted by HuronBob at 8:04 PM on November 12, 2012 [2 favorites]
There is such a thing, for example, as elder day care. There are things he needs to be investigating and I think you need to tell him plainly that YOU have your hands full and that HE has a responsibility to make sure she is safe.
posted by St. Alia of the Bunnies at 8:22 PM on November 12, 2012 [2 favorites]
posted by St. Alia of the Bunnies at 8:22 PM on November 12, 2012 [2 favorites]
A consultation with a professional Geriatric Care Manager might be helpful to you.
I know how rough this is. Echoing HuronBob's advice to take care of yourself. Feel free to MeMail me if you ever want a sounding board.
posted by keever at 8:53 PM on November 12, 2012 [3 favorites]
I know how rough this is. Echoing HuronBob's advice to take care of yourself. Feel free to MeMail me if you ever want a sounding board.
posted by keever at 8:53 PM on November 12, 2012 [3 favorites]
Considering that your parents don't have much of a support network where they are would they consider moving closer to you and their grandkids?
Your father doesn't want to be the only caregiver (which is entirely reasonable). There are no nearby family or friends. There's no available cash to pay for a caregiver. Something had got to give in this situation. Moving is a reasonable option particularly if they have equity in their home that they could cash out and if they buy something smaller. The home they picked in their prime may not be suitable for elderly people anyway. They're looking for single story, a low/no maintenance yard, etc.
Take care of yourself. These are hard issues.
posted by 26.2 at 12:25 AM on November 13, 2012 [2 favorites]
Your father doesn't want to be the only caregiver (which is entirely reasonable). There are no nearby family or friends. There's no available cash to pay for a caregiver. Something had got to give in this situation. Moving is a reasonable option particularly if they have equity in their home that they could cash out and if they buy something smaller. The home they picked in their prime may not be suitable for elderly people anyway. They're looking for single story, a low/no maintenance yard, etc.
Take care of yourself. These are hard issues.
posted by 26.2 at 12:25 AM on November 13, 2012 [2 favorites]
Nthing that your folks should consider moving closer to where you are and looking at an independent living community even if it's not yet time for a move. I've just been through this with my own mother (I too am an only child) and it's really better if your folks don't wait until you have to do most of the work.
My email's in my profile; feel free to drop a line if you want to talk to me about the process. Be kind to yourself. This may be the hardest thing you ever do.
posted by immlass at 7:46 AM on November 13, 2012 [1 favorite]
My email's in my profile; feel free to drop a line if you want to talk to me about the process. Be kind to yourself. This may be the hardest thing you ever do.
posted by immlass at 7:46 AM on November 13, 2012 [1 favorite]
I agree that your dad should consider moving, and should consider doing it now rather than later, when both he and your mom may not be in as good a position to do so. My mom is the sole 'point person' helping my grandma, largely due to disinterest/avoidance on the part of other nearby relatives (incredibly frustrating, but it is what it is) as well as many relatives who live on the other side of the country. It has been so important that my grandma moved from 2 hours away to 10 minutes away while she was still fully capable of doing so. Currently she's at a great place where right now she lives in a senior community in an independent condo (but with the option to have meals, assistance, etc. when she needs it), and when the time comes, she will be able to move into assisted living/skilled nursing on the same property and keep the social connections she's making rather than being thrown into a whole new environment. I wonder if this type of senior community could be a good option for your parents?
Also, bottom line, your dad needs to step up to the plate here. It's totally reasonable to have certain expectations about retirement and to be really disappointed when those expectations aren't met...but...shit happens and you've got to deal with the disappointment and live up to your responsibilities. The same is true of people at every single stage of life whose partners or kids (or selves) come down with a serious illness. A move on your parents' part can help make dealing with things at least somewhat easier since your dad would have more of a support network. And I think you would have a lot more peace of mind being able to check in on them and help without the crazy drive. But whatever he decides, your dad is going to have to deal with the fact that the status quo is now changed, period.
posted by rainbowbrite at 8:13 AM on November 13, 2012 [2 favorites]
Also, bottom line, your dad needs to step up to the plate here. It's totally reasonable to have certain expectations about retirement and to be really disappointed when those expectations aren't met...but...shit happens and you've got to deal with the disappointment and live up to your responsibilities. The same is true of people at every single stage of life whose partners or kids (or selves) come down with a serious illness. A move on your parents' part can help make dealing with things at least somewhat easier since your dad would have more of a support network. And I think you would have a lot more peace of mind being able to check in on them and help without the crazy drive. But whatever he decides, your dad is going to have to deal with the fact that the status quo is now changed, period.
posted by rainbowbrite at 8:13 AM on November 13, 2012 [2 favorites]
"Ohio Area Agencies on Aging respond to the needs of the elderly in the communities they serve. They are advocates, planners, funders and educators, as well as providers of information and referral services. Area agencies work with public and private partners to respond to the unique needs of older citizens and families in their areas." The office in your parents' area should be able to answer some of your questions and refer you as necessary.
posted by Mr.Know-it-some at 10:44 AM on November 13, 2012 [1 favorite]
posted by Mr.Know-it-some at 10:44 AM on November 13, 2012 [1 favorite]
I don't think that telling the OP that someone else is going to have to 'step up' is particularly useful, especially since we're talking about an older man who may simply be unable to be an adequate primary caregiver for a progressively disabled spouse.
I imagine you've got to feel a great deal of responsibility here. I think your job, such as it is, is to help your father come to terms with the situation and adequately judge a) what kind of help your mom needs and b)what he is able to do and therefore c)what steps are next.
He might be open to reading some books or listening to experts if he's resistant to advice from you, after all, you are just his kid :-)
Several great options have been suggested here and it might be worth your while to schedule a visit back home that is specifically to meet with him to discuss this challenge. Be forthright about it.
posted by bq at 11:10 AM on November 13, 2012 [1 favorite]
I imagine you've got to feel a great deal of responsibility here. I think your job, such as it is, is to help your father come to terms with the situation and adequately judge a) what kind of help your mom needs and b)what he is able to do and therefore c)what steps are next.
He might be open to reading some books or listening to experts if he's resistant to advice from you, after all, you are just his kid :-)
Several great options have been suggested here and it might be worth your while to schedule a visit back home that is specifically to meet with him to discuss this challenge. Be forthright about it.
posted by bq at 11:10 AM on November 13, 2012 [1 favorite]
Talk to your dad about looking into senior apartments/housing. This will be a lot easier on him if he has help. We had to do this for my grandma and it ranges all the way from just people having to be over 65 to ones that will check on you and help with daily needs (much pricier but cheaper than a nursing home). It would be a lot easier for you to be able to help if your mom and dad are willing to move close to you. It might sugar coat the idea for him if he looks at it as still being able to do some of the things he's wanted to do because you can watch over your mom sometimes.
Just looked at your profile and you're in Indy too. If you'd like some names of places, it's okay to contact me. I looked at way too many. I'm mostly familiar with the South and East side. Crestwood was the place I liked best but at the time, it was for people who were still in mostly decent health. They were working on making one of the buildings over for people who needed assisted living. We had to move my grandma to assisted living before they were done so I can't vouch for how it turned out. The regular apartments and activities were good. My grandma really liked enjoyed the social aspect and I think wished she would have sold her house and moved sooner.
http://crestwood-living.com/sub/locations.htm
I hope this isn't being pushy but I just read an article about a condition that can be misdiagnosed as Parkinson's with Alzheimer's or dementia. It's probably a coincidence but it might be worth asking your mom's doctors if they've ruled it out.
http://www.parade.com/health/stay-healthy/2012/11/11-not-alzheimers-normal-pressure-hydrocephalus-nph.html
posted by stray thoughts at 6:02 PM on November 13, 2012
Just looked at your profile and you're in Indy too. If you'd like some names of places, it's okay to contact me. I looked at way too many. I'm mostly familiar with the South and East side. Crestwood was the place I liked best but at the time, it was for people who were still in mostly decent health. They were working on making one of the buildings over for people who needed assisted living. We had to move my grandma to assisted living before they were done so I can't vouch for how it turned out. The regular apartments and activities were good. My grandma really liked enjoyed the social aspect and I think wished she would have sold her house and moved sooner.
http://crestwood-living.com/sub/locations.htm
I hope this isn't being pushy but I just read an article about a condition that can be misdiagnosed as Parkinson's with Alzheimer's or dementia. It's probably a coincidence but it might be worth asking your mom's doctors if they've ruled it out.
http://www.parade.com/health/stay-healthy/2012/11/11-not-alzheimers-normal-pressure-hydrocephalus-nph.html
posted by stray thoughts at 6:02 PM on November 13, 2012
When my dad was in early dementia (he's now in the late stages), my mom seemed unwilling or unable to make necessary decisions about his care at times. In retrospect, I think her personality just made her more comfortable living in a bit of denial while she processed things internally. She's made good decisions - just not as quickly as my sis and I might have liked.
What helped for us was to have a family meeting with her alone (since she wouldn't talk about it in front of Dad) and say, "Here's where we are. We have some decisions to make. Mom, we're here for you. You're perfectly capable making these decisions and we trust your judgment, and we want you to know we'll help you figure things out or research things if you need or want us to. Just let us know - we love you."
My folks are 85 and 87, and Mom is caring for Dad with hired morning help five days a week. It's more than a full load for Mom. As time goes on, she relies more and more on my sister and I (who live out of state), but there's still a delay from when my sis and I think something needs to happen and mention it to her until she processes it and actually makes a decision. My sis and I are alternating months flying to my folks' to help for a week. In between visits, we talk to her daily.
What we've attempted to achieve has been a delicate balance between respecting our mom's (fierce) independence and (fully functioning) reasoning ability and knowing when something absolutely must be done. Prayers for your wisdom in knowing the difference and thoughtfully navigating these delicate waters.
Do you have any friends in a similar situation? My sis has been my lifeline in this, and she feels the same. It helps a lot to have someone to call who gets it to bounce ideas, frustrations, and plans off of. If you don't know anyone you feel close to that you can lean on in this way, you might want to look for a dementia support group to attend - there surely is another only child who needs that kind of sister-support. One of the hardest things about this cruel disease is its ability to isolate the caregivers.
My sympathies to you - this is a cruel disease. As hard as it is, it's making me a kinder, more patient person. Remember that this is not forever - it's a season. Some days I need to remind myself of that more than once.
posted by summerstorm at 10:26 AM on December 4, 2012 [1 favorite]
What helped for us was to have a family meeting with her alone (since she wouldn't talk about it in front of Dad) and say, "Here's where we are. We have some decisions to make. Mom, we're here for you. You're perfectly capable making these decisions and we trust your judgment, and we want you to know we'll help you figure things out or research things if you need or want us to. Just let us know - we love you."
My folks are 85 and 87, and Mom is caring for Dad with hired morning help five days a week. It's more than a full load for Mom. As time goes on, she relies more and more on my sister and I (who live out of state), but there's still a delay from when my sis and I think something needs to happen and mention it to her until she processes it and actually makes a decision. My sis and I are alternating months flying to my folks' to help for a week. In between visits, we talk to her daily.
What we've attempted to achieve has been a delicate balance between respecting our mom's (fierce) independence and (fully functioning) reasoning ability and knowing when something absolutely must be done. Prayers for your wisdom in knowing the difference and thoughtfully navigating these delicate waters.
Do you have any friends in a similar situation? My sis has been my lifeline in this, and she feels the same. It helps a lot to have someone to call who gets it to bounce ideas, frustrations, and plans off of. If you don't know anyone you feel close to that you can lean on in this way, you might want to look for a dementia support group to attend - there surely is another only child who needs that kind of sister-support. One of the hardest things about this cruel disease is its ability to isolate the caregivers.
My sympathies to you - this is a cruel disease. As hard as it is, it's making me a kinder, more patient person. Remember that this is not forever - it's a season. Some days I need to remind myself of that more than once.
posted by summerstorm at 10:26 AM on December 4, 2012 [1 favorite]
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posted by HuronBob at 7:02 PM on November 12, 2012