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 How do you know when it's time? 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: How do you know when it's time?
I'm all for realistic optimism too, emphasis on the realistic!!! Doing things to help improve ADLs, etc. was about all we could do, and even those things went by the wayside after a while. And, of course, trying to keep our LO as comfortable as possible through all the challenges.....
I wish that others could experience the success that you say Coy has had. I don't know anyone else who has had such a miraculous turn about, or even anyone whose LO has shown some improvement and plateaued, either on the forum or personally. I'm glad that his situation has improved so much - you both are very lucky indeed. 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.


Mon Jul 25, 2011 8:54 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: How do you know when it's time?
Thanks, Pat, for the article. I definitely have been reading as much as I can (with the limited free time I have!), that part appeals to my scientific, research minded side and helps me to at least feel like I'm attempting to do something!

Jeanne, I think you're right regarding treating dementia differently depending on age group but I feel like there are so many other factors that affect this that we don't even know about it's tough to really get an idea on what approaches will help or not. Sometimes I do wonder if because my mom is still in her 50s if this will be more aggressive or if she'll live a lot longer than others. I just hope we can manage things and help her to be somewhat content while she's still around. I don't think she's as active as Coy is (oh, how I'd love it if she were!) and she's become pretty withdrawn. She seems happy to hear my voice when I call even if she doesn't actually talk much back to me beyond "yea" or "nope!" I think she responds better when she gets a cue she knows well - like saying "I love you too" when you tell her you love her - those phrases and words must be some sort of rote memory.

Lynn, my mom had some kind of miraculous turnaround too. I don't know exactly what to call it but for us it felt like a huge gift (even though now things are getting tough again). In November 2009, right before Thanksgiving, she couldn't take a cup of coffee from my dad or get out of bed, he took her to the hospital and she just went downhill from there. She was, for lack of a better term, like a "vegetable". She would not respond to anyone, wouldn't eat, wouldn't sleep, had seizures (she has epilepsy), had hallucinations (thankfully they were harmless ones like seeing the pets), and had to wear diapers. She wasn't even there, she was just gone. We went through a month and a half like that, not knowing what was wrong, if she would die, if she would get any better. It was, according to my dad, one of the three worst times in his entire life. I believe the week of my birth made the top three (yes, we joked about this. We're a sick, silly kind of group...), I was born prematurely and so there were a whole set of dramatics to go along with that. Eventually she made some huge strides and was eating and getting up to use the bathroom (assisted), and was able to come home. At that time/ shortly after she came home, she was taking care of her personal needs, making her sandwich for lunch, and even helped my dad cook and made a handful of meals herself. She was fairly functional and although she was quieter she still participated (or attempted to) in conversations. It was the most traumatic and scary thing we've ever been through and something I never want to repeat (though I know that's the direction we're headed, more or less) but I'm always going to admire my mom's strength and be thankful for this time that we have now. It's not ideal but she's here and we're trying to be hopeful. Some days I fail miserably at being hopeful but I try and I know my dad tries because otherwise I'm afraid we're not doing our best by her. I don't know if that makes sense. I'm sure it's absolutely different for everyone but sometimes I feel at such a different place because she's still so young.

Ah, sorry for rambling! It helps to get my thoughts out while I can :)

I'm going to see how things are while I'm visiting in a couple of weeks - that will give her time to either bounce back a little, stay stable-ish, or even keep declining. To me the changes will be more dramatic since I haven't seen her in person since April but I'll be able to talk to my dad about it more realistically then.

And while I'm visiting I'm taking her wedding dress shopping with me regardless!!! (Along with several of my close friends and my sister-in-law, they all know the situation and have been promising me that we'll all be fine).

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Mon Jul 25, 2011 10:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: How do you know when it's time?
When Derek had serious illnesses [pseudomembranous colitis, post-renal failure and septic shock on three separate occasions] or when he was put on Risperdal, he nearly died but did recover to baseline. These were not remissions in LBD but recoveries from the effects of illness or medications. His decline has not been as rapid as that of some, but it has been steady. Since I see him twice a day, every day, I need to look back to a year ago or even six months ago to really gauge his decline. Others, who see him less often, are struck by it. He has been treated since 2005 [the earliest he would consent to seeking professional care] and has benefited from carbidopa-levodopa, the Exelon patch and much later, Seroquel. Other medications have been tried with no benefit and were discontinued. He also takes a few other, non-Lewy-related medications.

For several years I encouraged--almost forced, in fact--his involvement in activities and social occasions because I assumed he would benefit from them. After some game attempts, he made it clear that he was not interested in pursuing these things any longer. He was becoming increasingly withdrawn and self-absorbed. It is interesting for me to read Craig's posts because I realize now that these very thoughts were [and maybe still are] going through Derek's mind. You can lead the proverbial horse to water but you can't make it drink.

_________________
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.


Mon Jul 25, 2011 10:35 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: How do you know when it's time?
Jamie,

Sorry I'm late to this thread. There is something I do want to advise, though. Trust your father and brother in this decision. They will know when it is time. It is largely a matter of what they can handle, rather than any special condition or event that would point to a care center. They may, though, know that it is time but not want to admit it. They may, as I did, need a crisis in order to admit they've done their best, but can't do it anymore. It is really hard to give over the day to day care of someone you love.

When you visit, a word of caution, please. Your father and brother are living with your mother and know her situation more intimately than anyone. A visit isn't enough time to understand all of the dynamics at play. Respect their perspectives as primary caregivers and avoid "telling them" what they need to do, unless directly asked. Be gentle in your suggestions and always acknowledge that they are doing the best they can.

Living with dementia, whether you have dementia or a loved one you are caring for 24/7 has it, is an excruciating experience. It is very easy to feel lost and alone in the situation. When you are living under the same roof, and have siblings who do not and perhaps are at some distance, you sometimes feel abandoned. Take that into account when you discuss things with your brother and father.

While you are there, think about giving your father and brother some respite. Send them fishing or to a ballgame - or even on a camping trip for a couple of days, if they enjoy that sort of thing. This could easily be the best gift you could give them and the best way to show your appreciation for the responsibility they have taken on. It could also be the quickest way to experience what caring for your mother is like now.

I know that long distance caregiving is hard, too. But there is a definite difference. Do what you can to help your father and brother. They are in as much need as your mother.

Best wishes.

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]


Tue Jul 26, 2011 12:51 am
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: How do you know when it's time?
Thanks for the advice, Kate. I'm very, very well-aware of the difficulty of the situation for both my dad and brother. I'm the one they vent to! :) Of course there are things they don't tell me but I just want to be able to support them however they need. I always try to encourage them to vent to me and they really are doing the best they can (I don't know how they manage it, I told my brother that he's doing better than I probably would!). I feel bad that I'm not there to help but they know I'd do much more if I could. I do plan to give them a break while I'm visiting and spend time with my mom.

I talked to my brother again yesterday and he reiterated his frustration and that he's convinced she needs to go somewhere. I told him to be patient because dad has to get everything in order first and that I think it seems that our dad is in a bit of denial too. I think dad keeps hoping that this is a temporary decline, I do too, but I'm afraid it isn't. You're right, it may take something drastic happening to convince him otherwise. As hard as it will be to eventually have mom live somewhere else I think it will be a little bit of a relief at the same time. At least I know it will be for my brother.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Wed Jul 27, 2011 10:07 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: How do you know when it's time?
Jamie, something occurred to me last night that I think I should point out. Being in a care center isn't as bad as it sounds. When I was caring for Mom at home, her only outside contact was with a few ladies at daycare and that was it. Now, at the care center, Mom is actually very popular and gets lots of attention and gestures of caring - not just from the staff, but from other residents, too. The residents are enormously supportive of each other. There's D who greets Mom with a happy "whoo" when she sees her and is always waving at Mom across the room. There are M and H who are so soft-spoken you have no idea what they are saying, but are really nice. Even C who spends mealtimes complaining is really a very sweet lady. There's a group of 4 women who sit at the table next to Mom's at mealtime and have such fun conversations. There's R who, on his first day there, really tried to tell the staff, and me when I got there, that Mom had fallen. And there's another R that I think my Mom has a crush on. Whenever we take a walkaround, she wants to go in his direction. (I think it could be mutual, as he tends to be in areas that Mom frequents.) There are activities all day, along with therapy. I actually look forward to visiting.

There are so many other, wonderful, people there. It's just that they occasionally have a bit of trouble and act out. But most are pretty benign. Though it would never be anyone's first choice for a living situation, it isn't that terrible, either. Please try to look at a care center as a good choice, rather than an unpleasant necessity. It makes a huge difference in the overall experience.

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 Jul 27, 2011 2:01 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: How do you know when it's time?
Thanks, Kate for sharing your mom's positive experiences at her care center. That does help put my mind a little at ease so at least one day maybe it won't all be bad. It's just a matter of being able to find a place we like and think she'll be happy in versus what we'll be able to afford. I'm sure mom would be popular if she interacts with anyone at all - she laughs a lot and at least a couple of months ago was still cracking a few jokes. My dad says that she's the easiest person to take care of because she doesn't ever complain and she doesn't ask for anything (though I'm sure he's feeling differently in the times where he struggles to get her in the shower) so I hope her demeanor doesn't change over time.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Wed Jul 27, 2011 5:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: How do you know when it's time?
Jamie - my dad was in a wonderful ALF. Most of the people there were very helpful and respectful to him, and some of them became extremely close to him and were devastated when he died. When I'd leave there I knew he was in a safe, clean, attractive place with people who really cared about him and took good care of him. I was always grateful that he'd made the decision to move there just before his huge decline, but if I'd been the one who had to make the decision, that is just the way it goes.
I miss seeing some of the residents and many of the staff who are still there. They became part of our family and we were very lucky to have found such a wonderful place. I have absolutely no regrets that he was there, other than the fact that it was 500 mi. from where I live, which made my life very stressful in terms of constant travel. The place itself was very good, and the few times things weren't up to snuff, the administration would make sure any issues were taken care of pronto. 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.


Wed Jul 27, 2011 8:32 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: How do you know when it's time?
Jamie: If you have rooted around on the forums and seen my posts, they are overwhelmingly positive about my husband's ALF facility.


Wed Jul 27, 2011 10:35 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: How do you know when it's time?
As you search, don't discount an established SNF in favor of a new one with bigger rooms and greater convenience. (Not that you would, just something to think about.)

The care center Mom is living in is older. My youngest sister actually volunteered there as a teenager. It is near our old home, so there are sometimes residents and volunteers that are old friends or neighbors there. And the place has been around long enough to know how to provide a comfortable and caring experience. I often tell people that though the grounds are beautiful, it is actually the staff that makes this place one of the best in the state. Yes, you can get bigger rooms with more conveniences in newer facilities. But how often can you find an aide that becomes family? Mom is actually thinking of her primary aide as a daughter.

There are other threads that advise on selecting an SNF. Do a search and see what you can find. The one thing I will recommend, though, is using the Medicare/Medicaid ratings of SNFs. And look at several years, instead of just the past year. You need to see a pattern of high ratings in the areas that most concern you.

Good luck in your search. Keep in touch about what you find!

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 Jul 28, 2011 1:35 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: How do you know when it's time?
Sorry, I'm very late to respond! Things have been busy and a little overwhelming as my fiance and I prepare to move in a couple weeks.

My mom has continued her downhill slide and the lawyer my dad was referred to got him in touch with an occupational therapist who evaluated Mom a couple weeks ago. Mom's score was a 1 out of 30, I think the only thing she knew was that she was at home (which makes the fact that she may not be there much longer even harder to bear). She's been wetting the bed at night although she does not fight my dad when he puts a diaper on her. The occupational therapist is looking very hard for an appropriate place for Mom and is trying to take the most important factors into the search. She had asked Dad what he most wanted and first and foremost our priority is getting Mom the best care we can at a place that isn't extremely far away. He was surprised at the speed that the OT was trying to go but I appreciate she recognized how urgent the need is to get Mom the appropriate care. When we talked about it last week Dad said that Mom could be placed even before I moved back home (which, at that point was slightly less than 4 weeks away). I'm not sure that will happen now but if it does I trust my Dad's decision and I know he has her best interests at heart even though this whole thing is heartbreaking for us all.

When I talked to my dad yesterday he sounded stressed (as usual) but it seems that the sadness of it all is starting to hit him. He's going to have a hard time when Mom isn't home anymore but I think part of him is looking forward to things getting better (as far as being able to clean the house and go through all the clutter and Mom getting better care).

So a couple days over 2 weeks left until I'm back in my home state and I can see Mom whenever I want. I keep trying to find the good in this and at least there is that. I have had a few nightmares where Mom wasn't able or allowed to come to my wedding in September. I don't know if she'll be there but even if she's not I know she would be proud of me and so pleased. And now, we wait. I'm excited to go home and even, in a way, looking forward to getting Mom settled in once a good place is found. I know my dad and brother will be relieved and I know that she'll be getting her needs met better than my dad and brother can do at home.

I think I'm finally making my peace with this. I guess even stubbornness can't last forever.

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Thu Sep 29, 2011 2:09 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: How do you know when it's time?
Curious that an OT is involved in this planning. That's the first time I've ever heard that.

Hope a great place is found for your mother!


Thu Sep 29, 2011 5:26 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Post Re: How do you know when it's time?
Robin, could be someone that works closely with the OT, I'm not certain. My dad tends to talk about things in a general way so it's quite possible he got confused or I did! I'm just relieved that someone is looking into things for them and so that's a huge help for my dad.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Thu Sep 29, 2011 10:06 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: How do you know when it's time?
Curious, but somehow logical. An OT would be able to judge the facility's accessibility and the activities and therapy available. And that's a huge part of the benefit of an SNF. I think it's a good idea!

Jamie, has your dad talked over finances with an attorney or a social worker? SNFs are very expensive, as you are finding out. Do not make the mistake that I made and sink your own money into your mom's care. I know that sounds uncaring, but I'm sure your mom wouldn't want you or your dad to find yourselves broke or deeply in debt because of the cost of her care. There are assets your dad can retain if it ever comes to the point where Medicaid kicks in. And if you have an idea of the point at which your dad has enough to live on (or at least what's allowed) and the rest has gone, you will be able to cleanly apply for Medicaid for your Mom.

About your wedding. It is possible that the crowd and the ceremony could overwhelm your mom, if she has gotten to that stage. Don't push her to be there, but if she does attend, I'd suggest having a relative, or even a paid attendant, there specifically to take care of her needs. That way, you can enjoy your wedding as a bride should and still know that your mom is OK. One thing I did at my niece's wedding last year was to rent a hotel room for Mom and me. She was still able to attend and enjoyed it immensely but tired quickly. I was able to slip her out of the reception and into the hotel room easily and without drawing attention to her exhaustion. And, she was able to attend a quiet wedding breakfast the next morning with the bride and groom.

If it comes to it, though, and she can't attend, one thing my nephew (who got married this year) did was to bring his bride and their wedding video to the SNF to share with his grandmother. It was so much better than trying to get Mom across one and a half states to actually attend the wedding. Mom watched the video and kept pointing to John and Allison to show she knew it was them. It also helped her absorb what had taken place in a quiet, peaceful, setting.

Best wishes for your wedding. Is it coming up soon?

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 29, 2011 10:21 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Post Re: How do you know when it's time?
Thanks Kate for the great ideas. The wedding isn't until September so my gut feeling is that she won't be able to be there. I hate it but that's the likely reality of the situation. I just have such mixed feelings because I'm excited to marry this great person who has been truly supportive of me and my family but I'm so deeply sad that she won't be there. Even if she can be physically it's not the same and it's not what she would have wanted. And I hate to say it but I find myself a little jealous of friends who have gotten married and have pictures with their mother and talk about how their mom was so great/ supportive/ happy on the wedding day.

I just want to be able to honor her in some way on the wedding day. It's not really anyone's business why she's not there (if she isn't) but I want people to know how special she is. I just don't want anyone to forget about her, I guess. Especially if she can't be there.

My dad has hired a lawyer to help with everything as far as finances go and he's following her advice. I think we're trying to do everything the right ways/ as best we can. I think we'll be okay because there's really no other choice in all of this.

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Fri Sep 30, 2011 12:10 pm
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