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 I have no clue what to do.... 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: I have no clue what to do....
Jeanne, it's great that Coy enjoys his "scooter" as they call them around here. There are several people around town here who use them quite well. When my mother's doctor told her no more driving, she suggested a scooter and even wrote out a prescription for it (I think for Medicare coverage).

Unfortunately, my mother told me after the appointment that she wouldn't be caught dead riding one. Rather than seeing it as a way to maintain some independence and dignity, she viewed it as a way of bringing attention to her condition and thereby embarrassing her. That was too bad, because she could have gotten a couple of years' good out of it, going the seven blocks to downtown whenever she wanted instead of waiting for rides.

There is also a weekly bus service sponsored by our county that will take elderly folks wherever they want to go, at an appointed hour, and of course bring them home. My sister and I tried to get my mother to try that--my sister even proposed going along the first time--but again, my mother said she wouldn't be caught dead riding that bus. Another opportunity lost.

For the two years before she went into the SNF, my mother never tired of telling shopkeepers, clerks, and whoever else we encountered on her errands that "my daughter won't let me drive anymore, so I have to wait for her to drive me." I don't think she ever got over the sting of losing her driving privileges. In this culture, it is just really huge.

Julianne


Sun Mar 13, 2011 4:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I have no clue what to do....
I shudder to think of Derek with a power scooter in a store! :shock:

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 13, 2011 4:19 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: I have no clue what to do....
Dale never did get the hang of anything like that. He walked with a shopping cart as support most of the time.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Mar 13, 2011 4:29 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: I have no clue what to do....
Around here, folks leave those scooters outside (except at the grocery store, which has wider aisles). The scooters just replace cars and are used by people who are comparatively alert mentally, just not alert enough to drive cars, so I've never heard of anyone crashing one. Anything to maintain some independence, no doubt. My mother lives in this little town where it would have been quite safe, not to mention convenient, so it was just such a shame she would not try it when she could.

Julianne


Sun Mar 13, 2011 6:04 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: I have no clue what to do....
I really marvel at Coy's positive attitude. Ride a scooter after he's had to give up his Miata? Sure, you bet! Bowl on the Senior league, where at first he seldom broke 100 after bowling 200+ in his prime? That's OK, at least I'm bowling (and sometimes getting 130 now). Golf with the Courage Center program, where each golfer rides with a volunteer, and he doesn't have the stamina to play every hole? Hey, at least I'm still golfing! He is not embarrassed to say, "My hand is a little shakey today. Can my wife sign that?"

Coy gets really offended and mad when people want him to use aids or cut back when he "doesn't need it." We've had to do some negotiating with the day program where they think he should use a walker all the time. I'm not saying that his limitations are a total non-issue. But at least he'll accept help and adaptations when they make sense to him.

I can't say that his attitude is keeping him in early stage an unusually long time, but I say with conviction that it is allowing him to get the most out of it.

It is really sad to see people lose out on things because of their sense of dignity or their embarrassment threshold. I don't know if there is a way to overcome that -- probably not. But it is sad.

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


Sun Mar 13, 2011 6:46 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: I have no clue what to do....
I know exactly what you mean about people losing out on things, Jeanne. My mother is so preoccupied with what people are going to think of her--even now, she is so worried about what people will think if she makes a mistake. I didn't realize until recently how much that concern has overshadowed her life. It's a terrible burden. Luckily, she didn't pass it on to her kids!

Good for Coy! What a great attitude.

Julianne


Sun Mar 13, 2011 8:52 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: I have no clue what to do....
Corey,

I just read about your situation. I haven't had time to read all of the previous posts, but some serious work needs to take place with your parents. I know you and your siblings are young to have to deal with this. But there it is. Someone has to and neither of your parents can.

First, get all of the legal paperwork out of the way. You need to do this in order to have the authority to do what needs to be done. And if it is too late for your mom to assign POA, you may need to check into guardianship, even though your dad is in the picture, because it is too much for him and too difficult for him to realize it.

Then, get the car away from your Mom. If your dad is drinking, it might not hurt to get the car away from him, too. You can, if necessary, get ahold of the local police or your state's Department of Puclic Safety and notify them of the situation. You should even be able to do it anonymously. Let them do the dirty work of dealing with drivers licenses and just take the cars once you find that the license has been revoked. At the very least, the police will likely watch for your mom's (and dad's) car and keep an eye on her. You are not doing your parents any favors by letting them drive. Driving is not a right. It is a privilege that requires a certain level of performance from the driver.

About your dad handling medication management for your mom... Alchoholism is an addiction. Addicts tend to move from one drug to another and prescription drugs are easy to abuse. Also, if your dad is under the influence, he may mismanage the drugs and give your mom the wrong thing or too much of something.

If you do your homework and check them out first, assisted living and SNLs are not that bad and can even be a big improvement over staying at home. Your mom, and perhaps your dad, could - no would - benefit from assisted living.

But you and your siblings are going to have to do the heavy lifting. And the heavy decision making, which brings us back to the legal documents. Get them taken care of right away and use an attorney who specializes in elderlaw. Then, start making decisions and follow through. Remember that this has fallen to you. Just because he's Dad doesn't make him capable of handling issues like this. In a more perfect world, you would be older and it wouldn't be easier, but you'd probably be better able to accept what has to be done. Take a deep breath and step in, Corey. You may be the only one who can.

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]


Wed Mar 16, 2011 2:12 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: I have no clue what to do....
Corey,
I don't have any answers beyond what others have already told you, but it was a relief to hear a story so similar to my own that I just wanted to reply. I also have a relatively young mother afflicted with this disease, a father in his late 70's with major health issues and some denial about how serious mom's problem is, and a sibling who is not in a position to help much (in fact, she needs me as much as my parents do). I work full time as a teacher and also have two children at home. The youngest is 9. My mom no longer drives, but I had to be the bad guy and tell my dad that she had to stop. He agreed because she'd been in some fender benders I didn't even know about. Fortunately, she accepted it pretty well. We thought it was temporary, though, because at that time we thought her whole problem was sleep apnea. I worry about my parents' meals, housekeeping, medications, and just general safety. I've arranged for a bus service that will pick them up and take them to appointments for the times when dad isn't able to drive (because of heart surgery, etc.). I've also had a social worker to their home to explain the services available. I've arranged for my 15-year-old niece to vacuum and dust a couple of days a month, and I've taken them to the senior center to learn about their Meals on Wheels program and respite care. I feel like assisted living, at least for Mom, is just around the corner, but neither of them want to move. Sometimes I'm tempted to quit my job, but my youngest son has learning issues and will be attending the school where I teach when he enters middle school. I want to be here for him when he gets here. Please keep in touch because it would be nice to have some contact with someone else in my shoes. Oh--another thing--I started grief and loss counseling, and it helps SO much as I process everything.
Diana


Wed Mar 16, 2011 3:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: I have no clue what to do....
To all of you who still have children living at home - your kids really need you, and no matter what, they will continue to grow up. Their growth won't stop any more than the progression of age and your parents' illnesses. As difficult as it is, I think that at those times when a choice has to be made, my kids almost always came first. There were a few times when my parents, and then my dad, required my time due to their illnesses, and I did leave home, and go 500 mi. to take care of them until I could get help for them, then I'd go back home. I tried to keep that to a minimum when the kids were still in school because I knew my time with them was limited and once they're off to college, they are "out of the nest." But, there were times when my sister was living in Mexico, for instance, and there was no one else to go take care of things. Thank goodness my kids had my husband (their step dad) and their dad to take care of them in my absence. If they hadn't had all that support I don't know what I would have done! All the best to you Sandwich Generation folks; that balancing act of being a parent to our kids and to our parents at the same time is just the pits! I am thankful that my youngest was a sophomore in college when all h*!! broke loose with my dad's health. Lynn

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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.


Wed Mar 16, 2011 9:25 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: I have no clue what to do....
Lynn's right. If you have kids at home, they should come first. They are, after all, the people who will take care of you and make decisions for you when you are old.

I know my mother, if I had children, would have insisted that their needs would come first and that I should do whatever I had to as far as her needs were concerned. That's just who she was, and is. I think most mothers are like that.

And as a baby boomer, may I say to the next sandwich generation a big THANK YOU. I may not be able to come out with it later, as I strongly suspect I am headed down the same path as my mom and 3 of my grandparents. So I say it now. I may test you. But I have learned the sacrifices you will need to make for me and I bless you for it.

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]


Wed Mar 16, 2011 11:07 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: I have no clue what to do....
I am so torn between caring for my parents and giving my children my undivided attention. I hope I have managed to balance it fairly well. My eldest of 22 is reared and living his own life. I hope my 13 year old son and 9 year old daughter don't feel like they have been abandoned or neglected in any way. I take them to all their camogie, hurling, football and soccer training and matches. We do fun things together, and I always make sure I am 100% alert to their needs - be it homework or girl trouble (up to now there hasn't been much of that, but the day is soon approaching, methinks ) :lol:. We are all looking forward to our holidays this year! I know they don't have my full attention all the time, because at times there are issues with my parents that do take their toll, and I am worn out, but overall they understand when I am having a bad day and need some space. Sometimes, they ask how was my day, and I feel like I am the child and they the adults. I do worry that my caring for my parents may have a negative affect on them ( I try not to let them see me upset too often, but they sense it and sometimes I can't put on my brave face), but for the most part, ( I do see that they are very aware of other peoples needs, more so than other children their own ages) they seem to be happy well balanced children - I know, I know - the doting Mom :lol:

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Mar 17, 2011 5:56 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: I have no clue what to do....
Ger, Don't worry, your children will be fine. When my boys were 13, 10, and 7, I was the sole caregiver to both my parents. They passed 17 days apart. All three sons are now married with children of their own. Their lives are normal and happy with no negative effects of my caregiving days.....Bernie


Thu Mar 17, 2011 6:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: I have no clue what to do....
Your kids are more likely to grow up being very compassionate, having a better understanding disease and aging, and they will see you as a good, strong, caring role model who did what you could for your parents. Sounds like you're doing a great job of balancing your care taking roles. It's hard, but hang in there and do lots to take care of you, too. 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 Mar 17, 2011 10:01 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: I have no clue what to do....
thaks Lynn and Bernie. I do worry, but its good to hear from someone else that it will be ok xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Mar 18, 2011 4:59 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I have no clue what to do....
Ger,
Our son was only 13 yrs old when his Dad passed away with LBD, he went through the brunt of the illness and the day to day goings on and I actually believe this shaped his future, He is an adult now and is an EMT and still going to school for paramedic, I have seen how he is with people and he is patient and compassionate, so I think you don't have tomuch to worry about !

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Irene Selak


Fri Mar 18, 2011 5:53 pm
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