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 Dad with LBD Lives Alone & We're States Away 
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Joined: Thu Sep 22, 2011 12:31 pm
Posts: 11
Post Dad with LBD Lives Alone & We're States Away
Hi everyone. My 61-year-old father was just diagnosed with LBD. I can't say we're shocked by this news (we've been noticing certain symptoms for quite some time now—and hindsight is 20/20) but of course we are upset and worried and trying to cope/make plans/get prepared. Here's my issue: My father lives alone, and my sister and both live out of state (plane ride distance, not driveable). He has a girlfriend who has been a huge help with going to appointments with him, etc. but they live apart and we absolutely don't want her to feel like caring for him is her burden. His only other living relative, his sister, lives with her family 2.5-hours away so she will of course be willing to help but will not be a daily resource.

I'm very concerned with how my sister and I will be able to manage this disease long-distance. He's currently quite functional—still driving (although we need to talk to the doctor about that) and able to take care of himself and the house for the most part, etc. Along with some confusion, he's got the shuffling gait and he has fainted (the doc thought it was just from blood pressure at first, which he's also had issues with), and he's now having vivid nighttime hallucinations (which he can identify as hallucinations).

I know LBD doesn't have a linear/staged progression like Alzheimer's, so I'm having a hard time figuring out the logistics of how we're going to cope.. to be able to gauge when he needs to stop doing certain activities (like driving) and when he'll need full-time care. I'm assuming he'll need to go into assisted living or full-time nursing facility before someone living with a caregiver would (how we're going to pay for that is a whole other can of worms). Unfortunately, for my sister and I, moving our families back to our rural hometown is just not a practical option, and we think my dad will absolutely not consent to moving near one of us. (Not to mention we both live in two different large cities so finding an affordable facility near one of us will be much, much harder.)

Gosh now I've written such a long message. I guess I'm wondering if anyone has done this long-distance or if anyone has any advice for us in this situation. Almost everything I've read assumes the person will have a family member who is the live-in caregiver and for many reasons that is not going to be possible for us. Thanks in advance for any insights or advice you might have!


Thu Sep 22, 2011 1:10 pm
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Joined: Thu Sep 22, 2011 12:31 pm
Posts: 11
Post Re: Dad with LBD Lives Alone & We're States Away
As a PS... my sister and I are, sadly, fairly experienced long-distance caregivers at this point. Our mother, who was also living alone, passed away from ovarian cancer last February and for the two years of her disease process we managed by flying in for surgeries and chemo, talking on the phone several times a day, getting to know the staff at the oncologist's office and calling them when needed, and relying on lovely friends who were able to help her get to appointments when she couldn't drive herself. But she worked up until 2 months before she died and was very independent, lucid, and able to take medications, make appointments, talk coherently with the doctor while my sister and I were on cell-phone speakerphone, etc.

I just don't know how we're going to make this work with someone whose mental and cognitive functions are the primary issue, when he has no one there. How to make sure he's taking his medicines, and correctly? How to make sure he doesn't faint and hit his head or get injured and there's no one there to know for days? How to figure out when he really can't take care of himself anymore when no one's there to see?

Obviously I've got a lot of questions and worries... Thanks again for any insights you might have!


Thu Sep 22, 2011 1:19 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Dad with LBD Lives Alone & We're States Away
Amanda, I am so sorry about your dad's diagnosis, and at such a young age.

You are certainly perceptive and correct that long-distance caring/support is very different for someone sick but competent and someone mentally impaired.

My husband is in his 9th year with Lewy, and still in the early stage. He is quite functional in terms of ADLs, but at no time since his diagnosis could he live alone, even if various in-home help were arranged. The huge problem is not so much memory loss but lack of good judgment. This gets worse if he is sick, tired, stressed, etc. It makes handling an emergency risky. And at first it was very difficult for him to recognize his limitations. He certainly would not have volunteered to stop driving, for example. He still thinks he could stay alone for a week. Wrong!

I have discussed with our children that if something happens to me, Coy cannot live alone. I would think for him, in the fairly good shape he is in now, an AL would be appropriate -- one with memory care that he could transition to as he needs more help.

It would certainly be good in many ways if your dad could live near one of you. On the other hand, if he has a close friend where he is, if he has ties to the community, if he sings in a choir, has buddies he hangs out with sometimes, etc. then disrupting that could be very hard on him.

To start with, I think some hands-on on-site exploration is going to be necessary. You and your sister can do lots of information gathering, educating yourselfs, looking into the financial aspects, etc. from a distance. But at some point, soon, a face-to-face consultation with the doctor(s) and your dad is going to beome important.

Hugs and best wishes to all of you!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 22, 2011 1:42 pm
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Joined: Thu Sep 22, 2011 12:31 pm
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Post Re: Dad with LBD Lives Alone & We're States Away
Thanks so much for your kind words and advice, Jeanne. We'll definitely be going home to figure some things out. In terms of him driving and living alone, what's so challenging is that neither of us have lived with him for so long that it's hard to even know what's normal Dad and what's not. He's a recovering alcoholic and after a near-death experience and detox he's been sober for more than 6 years (so he's very involved in and active with AA) but there were also some cognitive repercussions from that (mostly fine motor skills--he can't play the guitar very well anymore, for instance) and of course all the various effects that 40 years of drinking will get you.

So even when we know about behaviors/actions/potential issues (and finding out about them is truly challenging because he's your classic "doesn't-like-doctors, grumpy-about-health, stubborn-as-hell, closed-mouthed man" ("I'm fine." is very popular phrase)), it's hard to say if it's his personality/depression/bachelorhood... or all of the above being exacerbated by the disease... or a new symptom of the disease.. Oy.

He has a follow-up appointment with his doctor in a few weeks and I am at least going to try to be on the speakerphone so that I can ask the immediate questions about him living alone, driving, etc.


Thu Sep 22, 2011 2:23 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Dad with LBD Lives Alone & We're States Away
How does the girlfriend fit into the picture? Has she been with him through the thick-and-thin of the alcoholism/giving up alcohol, for example, or is she a fairly new addition to his life?

I've seen (on discussion boards) children who have just dismissed the parent's close friends, and insisted that only they could/should have power of attorney, medical proxy, etc. Only they should make decisions. I think that can be a mistake. Unless you have specific cause to think the girlfriend has poor judgment, has ulterior motives, etc., I would bring her on board as part of the caring team. That is, I'd consult her, keep her informed, and treat her like an ally. Maybe not give her any legal powers (unless that is what your dad insists on), but treat her as a partner to the extent that she wants to be involved.

In my local caregiver support group I was extremely impressed with the caring of one man for the woman he was living with. He was careful not to shut out the children who lived out of state, but he acted fully like a spouse.

If your dad has other good friends, maybe folks in AA, etc. meeting with these people and establishing a good relationship might be on your agenda for your fly-in period. If Dad does move to an AL when they visit him they can be your eyes and ears. They might notice things that won't be obvious by talking to him over the phone.

Certainly you don't want to burden anyone. But often friends are willing to take on concrete ways to show their support.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 22, 2011 2:49 pm
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Joined: Thu Sep 22, 2011 12:31 pm
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Post Re: Dad with LBD Lives Alone & We're States Away
They've been together for 5-6 years now (she's also in AA so they're active together, have a lot of the same friend base, etc.) She is absolutely lovely and has been so supportive and helpful in giving us the accurate information from his appointments (rather than the half-confused info Dad tells us).

He has, in the past, been a little bit nasty to her about her involvement in his medical stuff (part his personality and part probably a mood/depression/dementia-related effect) so she has since been cautious and worried that "it's not her place"... but also she was with him at the diagnosis appointment, she's helping to fill his pillbox with the right pills so he has them for the week, taking him to appointments, etc. So I think she's willing to be quite involved (although they don't live together) and will surely be a huge help. But she is also dealing with her own serious family stuff. Our worry about her is honestly that we don't want him to take advantage of her. (Although they do love each other--it's complicated. But then, what isn't complicated? :))


Thu Sep 22, 2011 3:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Dad with LBD Lives Alone & We're States Away
Hi Amanda - there are several of us on this forum who are or have taken care of LOs from long distance. My dad lived 500 mi. from where I live, and when he moved to an ALF 2 yr. ago that added 40 more miles to the trip. My dad was adamant about not moving to Vermont. He'd lived almost his whole life within 17 mi. of where he was born, had friends for decades, and didn't want to leave his friends. I think he figured the family would always come see him in MD but his elderly friends would probably not get to VT to see him if he moved.
Out of respect for him and his friends, we didn't move him. In retrospect, I should have moved him. By the end, only a few friends still drove the 80 mi. roundtrip to visit him. Some could not bear to see the shape he was in a stopped going to visit because of that.
For about 3 years I commuted to MD once a month, on average. When I wasn't there I was trying to manage his medical care, finances and house from my home. It took a big toll on my health and my own family came second. I spent a lot of time away from my husband, youngest son and my own life.
Don't get me wrong, I don't blame my dad. He couldn't help that he developed these awful diseases, but I wish now that I'd moved him to VT when he first needed to be in a facility. There are any number of good ones within a few min. of my house and he could have seen me, my husband and his grandson every day. I think he would have had better medical care here, so the battles I eventually had with his CNPs and psychiatrist on his behalf wouldn't have happpened either.
I still would have had his house and finances to deal with, but honestly, I think we would all have been a lot better off if I'd moved him when I first wanted to. Eventually it was too late - he was in no shape to be moved, and I couldn't even get an air ambulance to bring him here. It is so exhausting to be doing this from long distance and having to make the commute. I put over 20,000 mi. on my car in 18 mo. just on my VT - MD trips and drove over 500 mi. a week while I was in MD from his house to his ALF and back.
I hope others who are doing long distance care will chime in, and I hope you have people in a support group where you are who can also help you decide what's best. Good luck making the decisions that are coming up. And BTW, I'd have him stop driving ASAP. BTDT too - it's hard but necessary for his safety and everyone else's on the road. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Sep 22, 2011 8:34 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Dad with LBD Lives Alone & We're States Away
Hi, Amanda.

My mom is in an SNF close by and we shared a home for 25 years before that, but I do have a thought from way back.

Both of Mom's parents had dementia of one sort or another. Thankfully, my grandfather's had run its course before my grandmother started showing symptoms. Hers came on very slowly and, until she broke her hip, she was able to remain in her home in a rural town at least 100 miles from any of her kids.

A Godsend came along in the form of a young teacher in need of a place to rent in a rural town that didn't have much available for him. He rented a room in Grandma's house, but part of the agreement he had with Mom and her siblings was that he would keep an eye on her. He would follow behind her turning off burners, closing doors and such. He would even drive her to doctor's appointments. This worked for quite some time, until it was obvious she needed an SNF. I wonder if something similar might work out for your dad. Young teachers often start out in small towns and need places to stay and the connections that long-term residents/landlords can help with. Or maybe some other young professional. Maybe a son or grandson of a neighbor would fit the bill.

This young man (not so young anymore) stayed near and dear to my mom's heart for many years. He kept all of mom's siblings up to date on Grandma's foibles for several years. Maybe someone similar (checked out first by you, of course) would be helpful. Do check any person you consider for this carefully, though. My other grandfather made a "friend" who, piece by piece, removed most of the valuables from his home before we, again 100 miles away, realized what was happening.

Good luck with whatever you end up doing.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 22, 2011 10:27 pm
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Joined: Thu Sep 22, 2011 12:31 pm
Posts: 11
Post Re: Dad with LBD Lives Alone & We're States Away
Thanks everyone again for your thoughts. You've all been so helpful! We will hopefully know more soon (he has a doctor's appointment coming up where we can ask some of these very important questions).

I'm staring to sort through some of the nitty gritty that I know we can tackle now, like paying bills/etc. He mentioned that he doensn't currently have any life insurance and was wondering if he should get some (from AARP because he's seen the commercials). Going to do some research on costs/benefits. He obviously doesn't need a ton of coverage (no dependents or spouses), mostly for final expenses which will be on the minimal side since he wants to be cremated.

Has anyone dealt with trying to get affordable life insurance after their loved one's diagnosis? Wondering if there are any specific concerns/issues/tips.

Thanks again!

PS: Edited to add: his sister has also mentioned that she'd like my sister and I to consider placing him in a facility near her (which had honestly not even occurred to us yet) which is awfully nice of her. So that may be a really good option for our family. We will see.


Thu Sep 29, 2011 1:12 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Dad with LBD Lives Alone & We're States Away
If he wants life insurance just to be certain his funeral expenses are taken care of, why not consider a pre-paid funderal package instead? This would require you (him) to do a little planning, which also might be a good thing now rather than later. He is to be cremated. Some kind of a memorial service? Where? What papers should run an obituary? etc. etc.

If your dad's assets are not likely to be enough to pay for long term care as long as he needs it and he will have to apply for Medicaid (as many elders do), the insurance policy would be counted as an asset, but I believe prepaid funeral arrangements are not.

An elder lawyer (who can be young :P ) or an estate planner or even a medical social worker can give you some advice on these matters.

If your father has sufficient assets that Medicaid is not likely in the picture even if he lives a long time, then you don't need to worry about how various actions now would impact his eligibility.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 29, 2011 2:53 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Dad with LBD Lives Alone & We're States Away
Jeanne has a very good idea with the prepaid funeral plan. I did it for Mom. It isn't even necessary to plan the actual funeral/memorial. Any funeral director can take care of this for you. And a prepaid funeral plan is an allowed place for your dad's money if it ever does come to Medicaid or any other assistance.

The only caution is, and any reputable funeral director will make sure you know this, once the money is in the plan, you can't get it back. You can move it around from one funeral home to another. But it won't come back to you. Mom's on Medicaid, so it didn't matter that much to me, as anything that she might have when she passes will go to the state, anyway.

Good luck.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 29, 2011 9:55 pm
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Joined: Thu Sep 22, 2011 12:31 pm
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Post Re: Dad with LBD Lives Alone & We're States Away
Thanks Kate and Jeanne, that's a good idea.

I had briefly considered and dismissed it because I didn't realize the funds could be transferable between funeral homes, and since we may end up placing him in a facility near my sister, myself, my aunt, or in his hometown (which would be FOUR different states--oy!), we wouldn't know which state he might end up in for these final expenses.

Anyhow now I'm looking into it much more closely and it seems like it could be a good option for us. Thank you!


Fri Sep 30, 2011 9:22 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Dad with LBD Lives Alone & We're States Away
Make sure to double check that transferability with the funeral director you purchase the plan from. It works in Minnesota, but be sure it works in the state you make your purchase in - just to be sure.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Sep 30, 2011 11:58 pm
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Joined: Fri Dec 17, 2010 12:23 pm
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Post Re: Dad with LBD Lives Alone & We're States Away
AmandaW, not an easy decision to say the least. Do you have POAs, Advanced Directives in place? I highly recommend that you resolve the driving issue ASAP as he is a danger to himself as well as to others. Would your father consider moving closer to you or your sister or is that not an option? You are definitely going to have to get him settled somewhere. I do hope his girlfriend sticks by him as being all alone, far away from loved ones would be devastating.

_________________
IreneM (65) married to Renzo (75) dxd 1/06 with LBD. Probable Stage 3


Sat Oct 01, 2011 8:45 am
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Joined: Thu Sep 22, 2011 12:31 pm
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Post Re: Dad with LBD Lives Alone & We're States Away
Talked to the funeral director who handled my mom's funeral and he said it's totally transferable, Kate. Thanks for the tip!

Irene, we're working on the POA/etc. right now--we've contacted my dad's lawyer to give him a heads' up and schedule an appointment. We're asking about the driving and living alone at his doctor's appointment next week. In terms of moving near us, I'm in Manhattan and my sister's in Boston (he's in rural Ohio) and he really, really hates cities (funny that we both ended up in one), so we're pretty sure that's not going to happen, at least until he's much less functional than he is now.

His girlfriend has been wonderful and he just started taking Aricept and we're already seeing a difference, so we are trying to get everything else in place ASAP (he's been cooperative and on board with everything so far--he's even making plans himself. But we want to get the legal stuff sorted out first, in case he starts to become uncooperative if he thinks we're trying to bully him into assisted living. It took us years just to get the man to see a doctor!). And then we're going to have to have the tough conversation about his living situation. We are going to also ask the doctor about it though next week. And my aunt has mentioned that she'd like us to consider placing him in a facility near her when that time comes, so could be a great option for us.


Mon Oct 03, 2011 11:27 am
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