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Posts Tagged ‘California’

INCREASING KNOWLEDGE: Interviews on Capgras Syndrome sought in Texas and California

LBDA is urgently seeking persons in Texas or California who have Capgras syndrome, along with their caregiver, for possible interview with an international psychology magazine. Capgras syndrome, which can occur in LBD, is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member has been replaced by an identical-looking impostor. Those interested are encouraged to send a brief summary about your personal experience with Capgras syndrome in LBD to Angela Taylor at ataylor@lbda.org.

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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.

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Some of you who faithfully read this blog may have noticed over time that my entries have dropped off a bit. The frequency has decreased as things in my life have gotten hectic. So, those who continue to check for updates, I thank you for still following along. It’s time to get back in to blogging and so, I’ll catch you up on what’s been going on… a few entries at a time.

The first big bit of news is that the Husband and I have moved. After 14 months of living with and co-caring for Dad with Mom, the Hubs and I decided it’s time to focus on our future together. When we left Sydney, Australia to return home, we gladly did it knowing it was the right thing to do and that Mom and Dad needed help. Granted, we were newlyweds and never imagined that at 29 and 30 years of age we would be living with the parents but life happens and it was what was needed. Last year was not a good year for Dad and his health. Luckily, things have slowly improved after the New Year and I would say for the most part, Dad is now doing much better. Of course we all know how LBD can fluctuate and you just never know what’s going to happen. Despite the unknown, the Hubs and I made plans to move East and make Boston our home. I wrote about some of this on my personal blog but I’ll re-post some of it here, because really, it’s just easier.

“After much deliberation and taking into account my Dad’s health situation, it just made sense to make Boston our home. In an ideal world, Mom & Dad will sell the California house and return to Boston to be closer to family, friends, good hospitals and doctors. The market being what it is right now, the move for them might have to wait, but hopefully good fortune will be upon them and things will move along sooner rather than later. The hubs and I spent 14 months living with Mom and Dad to help caregive but the time had come for the Hubs and I to get back to us. As hard as it was to say goodbye and the stress and worry if they’re going to be okay can be overwhelming at times, we take comfort in knowing we’ll always be there for my parents- no matter the distance or any obstacles. I thank my lucky stars that I have married a special man that has the patience, respect and good nature to deal with such a difficult situation and all that it entails… but that’s a post for another time.”

Sister has been staying with Mom & Dad for the summer to help out while we’re gone but soon the school year will resume and she’ll be heading back to NYC shortly. I’m sure once she’s gone Mom is going to be in for some tough times ahead without anyone directly around her to help. I imagine she may be lonely, stressed, feel like the weight of the world is upon her and as if she’s going at this all alone. Even though she’s not, I can’t begin to imagine what it’s like for a spouse to see their beloved succumb to this terrible disease and to shoulder the burden of all that comes with it. We’ll all take things one day at a time and hopefully she can develop a routine that works for her and Dad. Sister and I will be calling every day, several times a day and will be there to help in any way possible. It will be a bit of an adjustment for myself in providing long distance caregiving but I know every little bit helps- and just knowing someone is in your corner is a source of comfort. Now that us kids will all be on the East Coast, I’m hoping Mom & Dad will be able to get out to Boston very soon. How soon depends on the finances and either selling the house or renting it, which during these times, is a bit difficult. Mom understandably doesn’t want to sell right now with the market prices being so low. Mom needs to sell at a higher price as she’ll need that money to pay off the house, move to Boston, rent or purchase something in Boston and ultimately, have some money left over to live on and pay for some of Dad’s medical expenses. At this time, it feels like a bit of a pipe dream.

Added to the stress of finances and selling the home is Dad being a bit resistant to leaving California. I think once Dad realizes it’s just him and Mom all alone, he’ll come around a bit as he’ll want to be near his kids. As much as Dad doesn’t want to leave California, it just makes sense- if not for my Mom’s own sanity. Being in Boston, Mom will have her kids close by, as well as, all her siblings and extended family. Having that kind of support so close will prove to be invaluable and allow her the opportunity to take a break, visit with family and so forth. It will also be good for Dad because he so enjoys seeing the family, too. I think being around friendly, familiar faces will help stimulate his daily functioning and give him something to look forward to- family birthdays, BBQs, watching the Red Sox and Patriots games with his brother-in-laws, etc. He’ll also only be a drive away from being able to see his own Sisters and their family and I know he would love that more than anything. However, something at the back of my mind is that a move East could also prove disorienting for Dad and send him downward. Those with cognitive and memory impairment tend not to do well with change. However, hopefully being back in Beantown where he and Mom spent most of their lives together and being surrounded by family and friends will help ease him in to the transition. Obviously, the sooner they move, the better- especially while Dad is still doing relatively well. If only we could win the lottery, right?

So, that’s where things stand for now. At the beginning of this month, the Hubs and I packed up our belongings in California and left the majority of it in storage. We loaded up the car with a few suitcases and drove across country. We are currently renting a furnished unit month-to-month while we search for our first home to purchase- hopefully before the winter sets in. Once we buy and are ready to move in, we’ll head back to California to pick up our belongings and once again, set out across country. It will also give us another opportunity to head back to Mom & Dad’s for a bit.

As you can see there was a lot going on between packing, preparing for the move to Boston, helping out at home and the normal every day things. There’s also more to it… but I’ll save that for another entry to come soon.

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