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 New - from MA; caring for mother-in-law (88) 
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Joined: Sun Jun 23, 2013 12:17 pm
Posts: 5
Location: Massachusetts
Post New - from MA; caring for mother-in-law (88)
Hi everyone! I've been lurking for a little while just trying to get oriented...decided today to just take the plunge.

*deep breath* okay....where to begin...

For the last five years my husband and I (63 and 62) have been caring for his mom. She is now 88 and still living in her own home, but her "independence" is mostly an illusion. A home health aide comes in Mon-Fri for an hour and a half each day, fixes her lunch, does some laundry and housekeeping, and showers her 2x/wk. She's a peach and we appreciate all she does. My husband and I also look in on her 3-5 times each and every day (frequency depends on the day and the need). We fix supper for her every night - she is not allowed to use the oven or stove any more bit can sometimes manage the microwave on her own), and I also help her wash up and get ready for bed afterward. On nights when she seems extra tired I don't leave until she's safely tucked INTO bed.
We first noticed something wasn't right back in the spring of 2006; at that time it was primarily the slow shuffling walk and an apathetic demeanor, which we mistook for depression. She saw her dr, and was prescribed an anti-depressant - the mood improved, the shuffling gait did not. Over the next two years she started experiencing sporadic episodes of imbalance (esp. leaning/tipping backward)...had several falls (no injuries). Then in May 2008 she contracted "shingles". Three days later she wasn't able to get out of bed due to severe imbalance (falling backward) and uncontrollable tremors in her left leg. We had to put her in a wheelchair that day and she has never walked independently since, despite numerous rounds of PT. That summer she started "seeing things" too, but episodes were infrequent and minor and we honestly didn't worry over them because we were far more focused on her mobility issues at the time. I was keeping a journal for my own purposes so I "made note" of them, but that was it. She also began "hearing" a man singing to her, which to her did not seem to be inside her head, but coming from "somewhere outside." We knew NOTHING about neurological disorders back then, so whenever odd stuff like that happened we tended to chalk it up to "old age."
She saw a neurologist in July '08 and was diagnosed with "atypical Parkinsonism". What's happened since would fill a book the size of "War and Peace". Suffice it to say I've done a lot of researching, almost obsessively! Although her neurologist was "leaning toward" a diagnosis of MSA a couple of years ago, she had not been made aware yet of the steady cognitive decline or sporadic hallucinations. Again, we were always more concerned with the physical aspects of her disease. Then this past February she experienced an intense, prolonged period of vivid, well-formed hallucinations that caused her to become agitated and fearful. A panicked call to the neurologist resulted in a 'script for Seroquel (12.5 mg/day) which successfully tamed the hallucinations (and continues to keep them under control....so far....knock on wood!). Then a visit to the neurologist two weeks later led to an additional 'script for the Exelon patch. After going back over everything that's happened over the last five years I'm convinced my mil has LBD. Her next appointment with the neurologist is in August, and I believe she's going to agree with me.
So that's my introductory story in a very small (but wordy) nutshell. I would welcome any and all support, advice, sharing of experiences, etc. from anyone willing to offer them. I would especially love to connect with any others who are caring for an elderly parent/in-law. I've been participating on another forum for caregivers, and it's been very helpful, but lately I've been wanting to connect more directly with people who truly understand the random ups and downs - literally! - of LBD. I'm so glad to have found this forum and I'm looking forward to making new connections.
Thanks for listening!


Mon Jul 15, 2013 8:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: New - from MA; caring for mother-in-law (88)
Welcome, and all I can say is that your MIL is very lucky to have the support you and your husband are giving her. There is a ton of info. on this forum, so I'd suggest you find topics first that are the most important things you may be dealing with right now. Read as much as you can elsewhere too. There are a number of books out now about LBD/PDD that can be of great help.
Does she have all of her legal matters in order? If not, you should get that stuff taken care of "yesterday".
What will you do when she has major safety issues when she is by herself? What plans do you have for when she needs care 24/7? If she can afford to stay at home with 24/7 care, at least for a while, that's great but since few can afford that, have you looked at options for facilities when being at home is no longer an option? My dad required 2 - 3 CGs many times a day in his last months, so even if he could have afforded $15,000 per month for stay at home care, he could not have afforded 2 - 3 times that, and most people don't have that kind of money.
Come back often - there's lots of info. and lots of support here. Many of us have seen this disease through to the end and beyond, some are just starting this very difficult and exhausting journey, many are in the middle of it. So, you are in good company! We all have a lot of empathy for the CGs and a lot of sympathy for our LOs who are living with this awful dx. Take care, 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 15, 2013 8:57 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: New - from MA; caring for mother-in-law (88)
Welcome to the the forums! My mom is 80 and was diagnosed about 2 1/2 years ago. Her symptoms also came to light after a bout of shingles. From July 2010 til this past January her symptoms went from pretty to mild to extremely severe ( to the point that I felt she was very close to death a couple of times), but since January she's been doing very well. She sleeps a lot, but most of the time she's pretty lucid. She uses a walker at home and we use a wheelchair when we go anywhere because of a broken leg that didn't heal right. I try to keep her well hydrated because UTI's can bring on a rapid decline in her cognition.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Jul 15, 2013 10:41 pm
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Joined: Mon Oct 01, 2012 11:24 pm
Posts: 15
Post Re: New - from MA; caring for mother-in-law (88)
Thank you for reaching out to the forum for support. The forum provides important information as well as a platform to express feelings, and share ideas.

I am confident you will find it a very useful tool!

Yours in service,

Toy

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LaToysa Scaife-Rooks, MPH
Lewy Body Dementia Association (LBDA)
Volunteer and Program Coordinator


Tue Jul 16, 2013 2:42 pm
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Joined: Sun Jun 23, 2013 12:17 pm
Posts: 5
Location: Massachusetts
Post Re: New - from MA; caring for mother-in-law (88)
Thank you for the warm welcomes!
Ellen - I know what you mean about UTI's. This time last year MIL was dealing with her third one in 12 mos., but since then (knock on wood!) she's been UTI free. It's a constant worry though, and I'm always on the lookout for a sudden rapid decline. She used to be able to tell me before because she felt "the burn", but I read so many places that as dementia worsens our LO's may no longer be able to recognize the signs. So much to pay attention to!!

Lynn - We do have legal matters pretty well in hand...her Will and insurance papers are in our possession, tucked away in our safe. My husbands has both DPOA and Health Care Proxy, also safely tucked away. MIL has a Lifeline button that hangs around her neck and never leaves it, even when she showers; she knows how to use it and has used it several times in the past. (she calls it her "tinker bell" :P) The company also performs monthly system checks to ensure everything is working, We also live less than 5 minutes away so we can be there in a heartbeat if she needs us for anything at all...we can actually get there faster than local emergency services can! As far as eventual 24/7 care goes, we have an appt. with her case worker from the local home care agency (same one that provides her HHA) this Friday, and plan to open a discussion with her about available options. I know they provide Supportive Housing, which may be one option. It's definitely a subject we need to investigate further. I'm still learning how to navigate this site, and I've already gleaned some great information. Will definitely be posting more...I have lots of questions!!!! On a side note, I read that you're an artist...me too! I have long wanted to get into watercolor...I think it's my favorite medium but in a way it's also my bane! I can see in my mind's eye the painting I want to create but once I put brush to paper ....well, suffice it to say I get frustrated. I think it's also one of the most difficult mediums too, so you have my deep admiration!

Thanks again for the warm welcomes and kind words! - Suzanne


Wed Jul 17, 2013 1:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: New - from MA; caring for mother-in-law (88)
Hi Suzanne - one thing you may need to look out for is your LO wandering out of the house, getting lost, standing in the middle of the road, etc. It doesn't happen to everyone but it has happened to a number of people on the forum's LOs. Just a word of caution since she lives alone...

In the last section of the forum there are a couple of places that we artists sometimes post photos or paintings, so when you need a break, stop by and take a look. And, post your own work there too. I think it's a nice, quick break for some people to have something non-Lewy on their minds if only for a moment.

I'll send you a PM with my email and I can send you some images of things I'm currently working on. 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 17, 2013 6:31 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: New - from MA; caring for mother-in-law (88)
Welcome to the forum Suzanne! You'll find lots of experience here and answers to pretty much any question - so keep posting! I'll add to what Lynn said - my mother also took to wandering at one point. Even though some days she could barely walk, others she'd walk out the door and down the street before my father knew she was out of the house. Then he'd phone me and we'd go looking. Once we found her laying on a lawn about 6 blocks away taking a rest. She was too tired to come home.

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Jul 17, 2013 8:20 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: New - from MA; caring for mother-in-law (88)
Welcome, Suzanne, and my sympathy on all the burdens you are bearing, and the care you are giving your MIL. The forum has been a huge help for me, and I hope it will prove so for you, also. Even though I've been doing research in dementia for more than 25 years, it's another story when you face the challenges day-to-day with your own loved one - my mother in this case.

I think you are doing a wonderful job, and it sounds like you are already thinking ahead as things get worse. (They will.) I would echo the cautions and advice others here have given. And don't wait until your husband's and your own health is overtaxed. We came close to that with my dad's health - he is 97 now, and insisted on having my mother with him until it became impossible, even in assisted living. Now, I'm there daily (they live just 5 min from my office and 10 from my house.) Also echo the warning on wandering. My mother would think the building was on fire and head outside, even in the middle of the night (though my dad would wake up and stop her at night.) Sigh.

Just know you are not alone, and that many folks here have walked this path and can give helpful tips, and support when there is nothing concrete to do.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Aug 07, 2013 4:14 pm
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Joined: Sun Jun 23, 2013 12:17 pm
Posts: 5
Location: Massachusetts
Post Re: New - from MA; caring for mother-in-law (88)
Thank you Laurel (and others!) - we've just gotten through a rough patch; after nearly a year with no UTI's my MIL contracted one a couple of weeks ago, and it really hit her hard this time. It also seemed to come on very quickly. She was hallucinating a lot on Sunday(July 21), told me it was burning when she peed on Monday - I wasn't able to obtain a clean urine sample until Tuesday morning (and already there was blood in it!!), and she started on the antibiotics that same night. I went back through my journal once she'd finished her round of antibiotics to see if there were any signals I coulda/shoulda recognized sooner but there was nothing that really stood out. She tends to lean left when she's overtired and, if anything, her lean may have been a little more pronounced than usual during the week beforehand, but when stuff like that happens it's so hard to tell if it's just another "dip" in the Lewy roller coaster or something else. It was also unbearably hot and humid that week so we figured it was just the heat getting to her. She's back on track now, doing much better, but for a while there we were starting to wonder if we'd entered a "new normal". She's never reacted this badly to a UTI before! Ah well...another hurdle leapt. Big sigh of relief....!
Regarding concerns about wandering outside; MIL is fully wheelchair dependent and has a healthy fear of attempting to go outside on her own. She knows she can't rely on her own strength and coordination to get herself down the wheelchair ramp...afraid she'd crash! We're out in the woods too, so her yard gets very dark once the sun goes down. In five years she's never tried it, or even entertained the thought of trying it, so we feel reasonably confident the only wandering she'll ever do will be contained within her own house. Thank you all though, for the thoughtful advice...it definitely can be a real concern. (Hugs) - Suzanne


Wed Aug 07, 2013 9:08 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: New - from MA; caring for mother-in-law (88)
Sounds like you won't have to worry about the wandering - one less thing! :) My mom had numerous UTI's and the thing we began to notice was confusion - additional and different confusion - but it was always late enough that antibiotics were needed...

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Thu Aug 08, 2013 12:47 pm
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