His Granddaughter

The other day, Dad got to hold his granddaughter for the first time. He was a little hesitant at first because she’s so little and she has all the tubes and wires going on. However, after a second of thinking about it he wanted to hold her and as soon as she was in his arms, he had tears of joy welling up in his eyes. He kept telling us what a thrill it was to be holding his grandchild. He was so happy and amazed to be holding his little darling and it just made my heart melt.

Tiny But Beautiful

It’s been a while since I’ve posted here. Let’s just say life has been chaotic, to say the least. The main reason for my absence is due to the early arrival of my baby girl while visiting the family for the holidays.

Without further delay, here is the newest member of our family…

Baby Girl

Born December 26, 2009 at 11:33pm via emergency C-Section.

3lbs 3oz, 15 inches long.

Our cutie pie had to make an early entrance into the world at just 31 weeks gestation. She has to stay in the NICU for a while but she’s growing bigger and stronger each day. Everyone is thrilled and we’re anxious to have her healthy and home with us. More pictures and details to come soon!

P.S. The pacifier is a special preemie pacifier and it still takes up a large part of her face!

Good Days

The past several days Dad has been doing pretty well. We all went out for dinner the other night and the day before that, Dad wanted to run out and do some Christmas shopping. We’re missing our tree skirt, for some reason, so Dad has been itching to go and buy one. So, Husband and I took Dad out, he picked one out and then he wanted to go for ice cream so we did. He loves his ice cream! Then he wanted to go Christmas shopping for Mom so we all took him out and he picked out a few things for Mom. He was pretty active in picking out what he wanted for her- I gave him some ideas and he picked out the type, the colors and the patterns. I even picked out some stuff I thought Mom would like but he knixed my choices and chose his own. He got her some lovely things that I think she’ll enjoy. We even did a little more shopping yesterday and Dad was fixed on going to the DKNY outlet to buy some DKNY socks- they’re his favorite. Unfortunately, they didn’t have the kind he wanted so that means I’ll head out to find them elsewhere. He seriously loves his DKNY socks.

With Dad, he can be hesitant about change- as he was with us putting up a Christmas tree and the wreath- but once it happens, he adapts and gets on with it. Dad has definitley adjusted to the idea of Christmas and it’s now a part of his routine. He’s seems to be enjoying the season as we witness him running to the mailbox every morning to check the mail for Christmas cards and gifts, wanting to finish off the tree with a proper tree skirt and checking out the neighborhoods decorated with holiday lights. He gets a big kick out of watching the movie, Home Alone. It always makes him laugh something wicked which in return makes us laugh, too. It’s nice to be together for the holidays to share the little moments that become memories.

Overall, Dad seems to be more lucid these days but his hallucinations are still giving him some trouble. While they’re bothersome for Dad, his hallucinations appear to be not as severe- more annoying to him more than anything else. He doesn’t seem to be so terrified by them like he was a little while ago. Hopefully the improvement continues.

Bah Humbug

With the Christmas season upon us, the fam has begun to decorate the house for the holidays. We’ve strung up some lights and decorated the tree but not without Scrooge, aka Dad, trying to put the kibosh on our Christmas spirit.

Since December 1st, we’ve been prepping Dad that Christmas is coming and we’ll be decorating soon. We talked about what he may want for Christmas (he has no ideas) and that Sister will be here to celebrate with us, too. We marked Christmas on the calendar and have Dad count the number of days until the big day. With all that, he still can’t seem to comprehend that Christmas is around the corner. It could be an indication that Lewy is taking greater control over Dad’s mind and body or he’s just heavily medicated right now (due to the hallucinations) making it difficult for Dad to understand.

When there is a Christmas movie on TV, he immediately demands us to turn it off… “It’s too early. This can’t be right.” When we’re in the car and the radio plays Christmas music, he wants it shut off. I don’t think it’s so much that Dad isn’t in the Christmas spirit, it’s that Christmas is a change from his normal everyday routine. With the advancement of Lewy taking over (or the medication tinkering), he can’t handle change as well as he once could. He has trouble comprehending that Christmas is less than 3 weeks away and I see that as a sign in the breakdown of his cognitive & reasoning skills.

With all that in mind, we decided to gently ease in to the Christmas decorations. We brought out the Christmas wreath a few days ago and let it sit around the house before hanging so Dad could get used to it. He immediately wanted us to put it away- “it wasn’t time.” Yesterday, we started decorating for the season and Dad had a bit of a tizzy that we were putting up the Christmas tree. We tried to get him to help hang the ornaments, but he didn’t want any part in it. He really doesn’t want to help with anything anymore so I guess we weren’t surprised that he could care less about decorating the tree.

I’ll probably try taking Dad out this week to do some Christmas shopping. We’ll see how that goes. He likes getting out of the house so maybe it won’t be so bad although a decorated mall could possibly disorient him. Maybe I’ll start small with individual store visits before heading to any major shopping centers. Just maybe, he’ll come around slowly but surely as he gets acclimated to the idea of Christmas, or rather, change.

UPDATE: As usual, after the change in his routine, Dad has adjusted and is enjoying the tree and wreath. We even went Christmas shopping yesterday and Dad helped pick out some presents for Mom.

Happy Thanksgiving

Just a quick update to let everyone know the past few days for Dad have been wonderful. On Tuesday he was exceptional and it was almost like there was no horrible Lewy messing with his body. Mom and Dad were even able to head out to the movies and for dinner. This disease is such a crazy rollercoaster- one day it’s just awful, the next day it’s as if nothing is wrong. Hopefully Dad can stay better for a while because things have certainly been rather difficult lately.

In any case, we wish everyone a happy and healthy Thanksgiving. Cheers!

U.S. Family Caregiver Postage Stamp Petition Needs Your Signature

Celebrate National Family Caregivers Month November 2009 by signing the petition letter for a United States postage stamp honoring family caregivers. The National Family Caregivers Association (NFCA) is in need of 2,000 more signatures and you can be one of them! Visit NFCA’s Web site by clicking here and then click on the U.S. Postage Stamp button on the home page to submit a letter to the Citizens’ Stamp Advisory Committee. And please pass this message along by posting it to your Facebook pages, Twitter, or other networking sites. Every signature helps!

California Bound

Husband and I are heading out to California tomorrow morning and we’ll be there until after the new year. I know Mom is certainly looking forward to our return and I’m happy to get out there to help her. Things have been very stressful for her lately. She definitely needs some respite and assistance as Dad has been quite the handful, especially today. He’s been incredibly difficult to manage with his raving hallucinations- he’s completely out of touch with reality. There’s no coaxing him back to the real world- he just lives in a world terrorized by his hallucinations. It’s crazy how this Lewy roller coaster works because yesterday he had such a good day and today you would think he needed to be in the hospital or something.

There’s a lot to be done while we’re out there and hopefully we can make some progress on getting things sorted.

Doctor’s Visit

Mom took Dad to see the doctor last week. He has been having constant hallucinations that just won’t quit. The poor guy is a tortured soul and Mom is completely sleep deprived. The Doc prescribed him Remeron (Mirtazipine) to help lessen anxiety and it also increases drowsiness, which should hopefully help him sleep a bit more instead of battling his hallucinations all night long.

The first few nights Dad took the Remeron it worked like a charm. He slept the entire night through until 10:30am. However, its success was short-lived and Mom has been awake every night since, all night long without anymore than 10-15 minutes of sleep at a time. He’s constantly haunted by his hallucinations and we just feel like no matter what we/the doctors try, nothing works… it’s just an awful time for both Dad and Mom. I just wish we could stop it somehow.

P.S. And for those wondering, Dad is already taking Seroquel. It helped for a long time but right now it’s not fitting the bill. He’s still taking it but it does not stop or even subdue his hallucinations at this time.

Happy Veterans Day

Thanks to all those who have served and currently serve in the military.

Thanks, Dad, for your years of service in the Navy… we love you!

Does Your Loved One Have Parkinson’s Disease?

Save the date to join the Parkinson’s Disease Foundation (PDF), online or by phone, on Tuesday, November 17, at 1 p.m. ET for an educational webinar, “How to Take Care of the Parkinson’s Caregiver,” with Barbara Habermann, Ph.D., R.N., associate professor, Department of Family Health Nursing at Indiana University School of Nursing. This FREE 60-minute PD Expert Briefing is part of PDF’s recognition of National Family Caregivers Month.

Many people often say that Parkinson’s affects more than the person living with the disease – it affects the entire family. Care partners – whether they are a spouse, a child, a parent or a friend – can experience significant life changes when caring for a loved one living with PD.

Dr. Habermann will explore common emotional responses that Parkinson’s care partners may experience. She will also identify signs of depression in the person with Parkinson’s and the care partner, point to specific areas where the partner may require help or assistance and let participants know about resources available to care partners.

How to Take Care of the Caregiver will be presented both as a webinar (web-based seminar) – where participants can watch a slideshow presentation online and hear an audio presentation either through their computer’s speakers or by calling a toll-free number – and as an audio-only presentation – for those who prefer to listen in by calling the toll-free number.

Participants joining the live session will have the opportunity to directly ask Dr. Habermann their own questions during the last 20-30 minutes of the presentation. This PD ExpertBriefing will also be available on the PDF website for up to one year after the live event.

For more information about this session, click here or call 800/457-6676. To register now, click here.

Info take from PDF’s site.

Learn How to Prevent Medication Mishaps: Join the National Family Caregivers Association’s Free Teleclass

November is National Family Caregivers Month. It is organized annually by the National Family Caregivers Association (NFCA) as a time each year to thank, support, educate and empower family caregivers.

In celebration of National Family Caregivers Month November 2009, the National Family Caregivers Association is once again offering a FREE teleclass/webinar to family caregivers across the country. “Safe & Sound: How to Prevent Medication Mishaps” will be offered on Thursday, November 12, at 2 p.m. EST.

This FREE teleclass/webinar will help you understand when medication problems are most likely to occur and what you can do to prevent them. There are approximately 100,000 deaths each year due to adverse drug reactions. This teleclass/webinar will give you the tools you need to minimize the possibility that you or your loved one will experience an adverse medication event.

You Will Get Answers to These Questions:

• Why should I learn how to prevent medication errors and events
• When are medication problems most likely to occur
• What can I do to minimize risks associated with medications
• How can I help my loved one be more adherent to medication regimens
• How can I prevent medication problems at the hospital
• How can I prevent medication problems at the doctor’s office
• How can I use my community pharmacist as a resource

Sign up for Safe and Sound: How to Prevent Medication Mishaps, today – and please pass this along to your family and friends. Click here to register now. You can participate for FREE by telephone or online.

Happy Halloween

Trick O’ Treat!

Daylight savings ends on the first Sunday of November so don’t forget to turn your clocks back one hour when you go to sleep tonight. It’s also a good time to check your smoke alarms and make sure they’re still working.