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 New Member from Oregon 
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post New Member from Oregon
Greetings from Oregon,

My 66-year-old mother was diagnosed with LBD w/ Parkinsons on May 27. It's been a long journey to get a diagnosis. We noticed little changes for 1-2 years which we attributed to things like arthritis, depression, etc. In early 2009 her doctor told her that her memory and focus issues were just normal aging. In June 2009, I took a weekend trip with her. That's when I became alarmed. She was almost in a zombie state all weekend. Her driving was scary. She could hardly breathe at night. I thought she must have sleep apnea and talked with my dad about my concerns. We told her she couldn't drive anymore until we figured out what was wrong. A sleep specialist said she had severe apnea, so she went on a CPAP machine at night. We thought that would fix everything, but she just continued to decline. She started falling. She couldn't remember words. Her vision was blurry. I watched my my vivacious, social, fun-loving mother withdrew further and further into herself. Doctors ruled out stroke, cancer, and normal pressure hydrocephalus. Parkinson's was ruled out by one neurologist in January but then another one said she does have it but with LBD, which is the primary diagnosis.

I am in the process of grieving the death of my mother, even though she's still alive. It's just that she's not the same person at all. I know she's in there somewhere, but it's harder and harder to find the woman I grew up with. So far she's having no real hallucinations and is as sweet as pie. I tell people that although my mother is gone, a sweet little old lady has joined our family who I love just as much. I've read that she may turn into an angry, mean person, but so far that hasn't happened. I pray it never does, but if it does, I just have to keep reminding myself that she can't help it.

Adding to my stress about this is my dad is 10 years older and has heart problems. He just had a quadruple bypass and valve replacement in March. A little over a week ago he had a pacemaker put in. I've had to take care of my mom--either sleeping at her house or her at mine--during the time he's been in the hospital and during his recovery. Since I work full-time as a learning specialist and have 2 very active sons (8 and 17), this has not always been easy. Thank goodness I have retired aunts who can help me when I need to work or do something with my boys. Also, my older son is driving now which helps.

I'm about to take a 2-week trip to Europe with my older son. It's a school choir tour, so we're going with 12 other teenagers, the choir director, and another parent. I'm looking forward to the trip, but I worry about leaving my parents for so long.

Sun Jun 20, 2010 2:10 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Welcome to the forum! Sorry you have to be here but glad you found us. Yes, we surely do grieve for our lost loved ones even though they are still alive. I fully understand how much you miss your mother, just as I miss my husband so much!

It sounds like an assisted living facility might be in your parents' future. Some are like senior apartments with minimal assistance and some provide everything short of nursing home care. For the short term, you will perhaps need to hire a qualified caregiver to stay with them while you are away if no other family member can do it. Please do not forfeit your opportunity to go on the trip!

God bless you!

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 Jun 20, 2010 2:19 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
You have a lot of stress in your life right now with both parents requiring so much of your attention. I think placing your parents in a dementia care facility would be good, or even a continuing care facility where they could "age in place" (and obtain skilled nursing help, should that be required).

Sun Jun 20, 2010 3:01 pm

Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post New Member from Oregon
My dad is open to going into a care facility at some point, but my mom doesn't want to go. This is a complete turn-around from the status quo. I expected Mom to want to go but Dad to resist. I know the time will come when it will be necessary, and then she won't have a choice. Dad doesn't feel it's the right time yet, though. He's still working through a lot of denial, I think. I've been encouraging him to hire a house keeper and to go to the senior center for some meals and respite care for Mom, but he hasn't acted on any of that yet. When I get back from Europe, I'll take them to the senior center for a meal, and hopefully that will be enough that they'll continue to take advantage of their services. I believe they'll be alright at home for now, but it's hard to say how much longer that will be true. The last time I mentioned it to Dad, he started crying and said that he's not ready to think about it yet. He's really scared about the future. I think at some level, he's still hoping to find out the diagnosis was wrong and that everything will go back to normal.

Sun Jun 20, 2010 3:26 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post You are doing great.
Sandwich Mom, I love your attitude. Things to have others watch for while you are away. UTI infections --- try to keep urinary track infections at bay; enough fluids, perhaps crancherry [my choice] juice every morning. Monitor all new medicines. Study the Dr Boeve Continuum for new meds--- really learn it by heart. Watch for any infections, nip them in the beginning.

I'm a Chorus and Band Grandmother myself. Have a wonderful and safe trip. You can do it!


Sun Jun 20, 2010 3:47 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi and welcome! It sounds like you really have your hands quite full, trying to balance your own family and your mom and dad. Truly the sandwich generation, right? It is not easy.
Perhaps another thing you might try with your dad (if you haven't already done so) is to tell him you don't want to lose both of them, and with his health issues, he needs more help now so he can stay strong for himself, your mom, and you. You may just have to be the adult here and make some tough decisions when things happen. It is a hard transition to parent your parent (been there, been doing it for a year now) but you'll get through it.
I, too, am grieving the loss of my LO, my 88 yr. old dad. He has been "gone" about a year, although he is still technically alive with no quality of life at all. Every time I visit it's like going to a funeral, over and over again. Dementia is a horrible, horrible disease. The best we can do is try to make our LO as comfortable as possible and to take care of ourselves. Your kids are still young, and giving the time and energy to them will be important as you balance all the stuff you have to balance. Do what makes the most sense for everyone, and try not to let the dementia take over your life. (I have been guilty of that, and it doesn't help my kids, husband or other family members - or me!)
This forum will be very helpful to you, and the chat may be also! Take care, sounds like you are doing a good job. Lynn

Sun Jun 20, 2010 3:59 pm

Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post New Member from Oregon
Thanks for all your advice and encouragement, everyone. I'm sure this site will prove invaluable to me in the years to come.

Sun Jun 20, 2010 4:35 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Welcome to the LBDA forums, I hope the forums can provide you with some info as I am sure it will, people here are living it just as you are.
Good Luck!

Irene Selak

Mon Jun 21, 2010 9:19 am
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