View unanswered posts | View active topics It is currently Fri Sep 04, 2015 6:41 am

Reply to topic  [ 10 posts ] 
 Mom has lbd 
Author Message

Joined: Fri Oct 28, 2011 1:31 pm
Posts: 29
Post Mom has lbd
Hello. My mom has had symtoms for the past 4 years. She was officially diagnosed this year at the Mayo Clinic in Florida. She lives in assisted living. She has been on Aricept for the past 2 years and that seems to help a lot. She also takes stalivo for parkinson's symptoms. Seroqel and Geodon are poison to her. I am an only child and am married with two children; one is homeschooled.

Assisted living is forcing my mother to move to the Memory Care section, but it is like a shoebox where three employees huddle together while the inmates watch t.v. They have been trying to move her for the past year by forcing me to get 12 hour per day sitters and charging more for assessment fees. Finally, they have just said that I have no choice and she has to move to that section. I honestly think it is because they have 5 rooms open there, and it costs much more to live there. We will be moving to another facility right before Christmas. I hate to do that, but I hope in the long run, we will all be happier. She will still be in a memory care section, but they seem to have more activities, and much nicer rooms.

She does well during the day and is still fairly social. She likes to participate in activities when she is not sleeping. At night she has trouble breathing when her parkinson's medicine wears off. She is continent during the day, but not at night. She has trouble getting to the bathroom because of the stiffness when the parkinson's medicine wears off.

If anyone else has children at home and a mother in assisted living, I would like to hear how you balance that. It is hard to give everyone the attention they need.

Sun Nov 27, 2011 9:08 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mom has lbd
First of all, welcome! You are very perceptive to have noticed the little game being played by the ALF. I often urge people not to place their LOs in a facility that is 'tiered' because there is a huge incentive for them to move people up the tier because the facility makes more money. I have seen one ALF [my husband was placed there temporarily] where they had an Assisted Living, a Dementia Unit and a Skilled Nursing Facility. My husband was in the dementia unit because he required a locked facility. If anyone in the dementia facility became physically disabled and needed personal care or couldn't walk, they were shifted to the much more expensive SNF.

Probably the best situation, if your mother does not have a lot of medical needs, is an Adult Family Home [sometimes called an Adult Care Facility] where there is a maximum of six residents. They often will keep residents until death, even though totally disabled, because there is no incentive to move them. The prices are much better, too. It is important to find out, when looking for a facility, just what criteria would necessitate eviction of a resident. There is a wide variety of facilities with different capabilities and resident populations.

Hope things work out. Hate to say this, but almost all facilities are run for profit nowadays and they are under pressure all the time to improve that bottom line. :evil:

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 Nov 27, 2011 10:42 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Mom has lbd
Welcome, Marie. You will find other people here in the Sandwich generation, caring for both children and parents. And many others not in that situation whose experiences may be of use to you.

Sorry you have to be here, but glad you found us.

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

Mon Nov 28, 2011 12:02 am

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom has lbd
Welcome, Marie,
I am in a similar situation, but I also have my Mom now living at home on her own (she is bedbound) after we moved Dad to the nursing home in August this year. I have 3 children, one who has 'flown the coop'. It is an extremely difficult and stressful situation.
Does your Mom have any brothers or sisters, or close friends? Could you speak to them and set up a roster for visiting? I asked Dad's friends to call on the days I can't, and it helped to ease my conscience when I felt guilty for not going to see him every day. It is not possible to keep going physically or emotionally to see her all the time. I became physically very ill from trying to do it all. You will fall down yourself, and then what good would you be to anyone? No matter what you think, your first responsibility is to yourself, because if you don't look after yourself, you can't look after anyone else. What about your husband/partner? Would he call one day to take that stress off you?
Maybe the new facility will be better and staff will look after her better and you may be happier leaving out a day here and there to catch up on the home front. I know I am now a lot more comfortable not visiting Dad every day, as I know he has settled there and the staff are very good to him.
I wish you all the best, and remember, you have to make a decision to look after yourself first. Come here often, there is great support here,
God Bless,

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

Mon Nov 28, 2011 4:29 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom has lbd
Hi Marie,

Sorry you've had to join us here.

Which Mayo Jax MD did the diagnosing? Does your mom live in Florida? Seems like there are lots of options in FL as far as care facilities go.

What about asking the neurologist to prescribe Sinemet CR to your mom at bedtime? It is supposed to last longer so may help with nighttime rigidity. Does she have room at her new assisted living memory care facility to have a SuperPole and a bedside commode? That would make getting up to urinate easier as well.


Mon Nov 28, 2011 1:56 pm

Joined: Fri Oct 28, 2011 1:31 pm
Posts: 29
Post Re: Mom has lbd
Hello everyone. Thank you for the kindness and understanding. I really appreciate it.

It is a comfort to know that other people have had to make the same decision that I have. I don't feel so alone, and believe me, I usually feel quite alone.

Thank you for the support. I do hope to run into other sandwich families here.

There is no one around except my husband and children. We all just moved to this area about 4 years ago for my husband's job. All of her friends are about 600 miles away, and her only brother is about 1,000 miles away. My husband and I are it and we are both only children. He works all day, and when he gets home we have boy scouts, girl scouts, soccer, and tennis that we have to divide between the two of us. I also homeschool my son, so my time during the day is spent teaching him. If I visit her, it always seems to be a full day affair. We visit her at least one day, usually two days, during the week, and one day on the weekend. The other weekend day I spend with my children. It try to call her every day.

We saw Dr. Taner. She seemed to be very informed in LBD. She spent a long time evaluating my mother. No we don't live in Florida, and where we do live, there are only two choices close by for assisted living. We are now moving to the second one.

She does take sinemet cr at 7:00 p.m., but it only lasts until about 12:00, only about 1.5 hours longer than stalevo.

Thank you everyone. It's nice to know I'm not alone.

Mon Nov 28, 2011 9:24 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom has lbd
Oh, this is the first I've heard of Dr. Nilufer Taner seeing patients so thanks for sharing the name. She is a dementia expert. She knows a lot about genetics.

Mon Nov 28, 2011 9:56 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Mom has lbd
Welcome Marie. There are many sandwich generation people on the forum! My youngest son was still in college when I was commuting 1,000 mi. roundtrip every few weeks to take care of my dad. So, it wasn't as difficult as having younger kids at home, but it was still stressful to leave my husband, son, and my life every 2 - 3 weeks for several years.
If my kids were younger like yours, I would have had to move my dad closer to me, whether he liked it or not. I never could convince him to move until it was too late to move him.
I'm glad you are moving your LO to another place. Sounds like that is what needs to be done.
One piece of advice - take time for YOU. You must take care of yourself because you can't afford to get sick and stressed out, so find some way to relax a little. (advice from someone who didn't do such a good job of that!) 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.

Tue Nov 29, 2011 8:16 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: Mom has lbd
Welcome, Marie.
I am sorry for the reason, but glad you found this forum. It is packed full of support, good people struggling with similar problems, and good options to pursue when you have specific needs to address.
It has been so valuable to me and so many others.
And feeling less alone when fighting this monster is good medicine unto itself.
Take care of yourself first, then you will be so much more able to help all the others in your life. It sounds like you have a good head on your shoulders and are willing to be proactive. That is a huge part of the battle.
Bravo on your decision to change locations!
Love and prayers!

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Wed Nov 30, 2011 1:57 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mom has lbd
Dear Marie,
Looks like you slipped by without a me welcoming you, sorry about that, but I would like to do that now and I hope you find the answers and support you are looking for here on the forums !

Irene Selak

Wed Nov 30, 2011 9:41 am
Profile WWW
Display posts from previous:  Sort by  
Reply to topic   [ 10 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010