It’s been a while since I posted to this blog. Since my father passed on Thanksgiving weekend, I’ve been busy moving my mother to the west coast so she’s near my sister and me. Mom is getting settled in her independent, don’t call it assisted, living facility. The day after the funeral we jumped on a plane with Mom and moved her west. Since her house sold in October, she had no place to live and she didn’t want to stay in the Philadelphia area. She was staying in a respite room at the nursing home where my father was and she wasn’t interested in moving into their assisted living facility. She wanted a clean break from Philadelphia and a fresh start on the west coast. She’s been dying to move west for years but the high housing prices scared my father.

I have so much to share with you about the process we’ve been through. It’s been a real roller coaster and I’ve learned so much. I want to share as much as I can with you because most of you will be dealing with this same situation soon. I’ll be posting on a regular basis from now one.

Thanks for your support!!

Ted

Tags: assistedliving, independent living, senior care, senior citizens

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With great sadness I’m sorry to announce that my father passed away Monday morning. He fought as hard as he could and never gave up, even at the end of his life. Dad had a saying “If you go to the dance then you have to dance”. It was his way of saying that you need to give 100% effort all of the time and never give up until you succeed. Quitting was never an option for Dad and he never gave up hope that he could beat cancer and Parkinson’s.

On Thanksgiving Day Dad took a turn for the worse but he kept battling until his very last breath at 4:15 AM on Monday morning. It was so hard to watch him fight his last battle but there’s no way I could leave the room and let him fight it alone. We were all there comforting him and encouraging him to let go but he just couldn’t give up. Giving up was never an option for Dad and he fought as hard as he could until he had nothing left.

I’m still reeling from the past three months and I have so much to process. I’m exhausted and sad but Dad has moved on to a better place. Not being able to walk and talk was not the way Dad wanted to live his life so I’m so glad he’s moved on. Passing was not easy for him because he wouldn’t give up but he’s completed his transition from this life. I’ll share more after I get some rest and have time to process my thoughts.

Thanks to everyone that’s commented to this blog and contacted me personally with support. I have so many new friends that I know will be there when I need them in the future. Thank you again!

You can read Dad’s obituary at http://www.legacy.com/philly/DeathNotices.asp?Page=LifeStory&PersonID=98738210

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It’s hard to think about being thankful today with everything that’s happened to our family this year. My mother-in-law, Eleanor, passed away suddenly in August, my father is battling for his life, Ellen’s father Jack is battling Alzheimer’s, and my mother is disoriented most of the time. We sold my parent’s house this week and everything they own is now in one suitcase each. Their lives have been turned upside down in an instant.

What is there to be thankful for? There’s still so much to give thanks for. Our family is strong and getting stronger every minute. This crisis brought our family together. We’ve always been a close family but the events of the past few months have brought us even closer.

My parents did a great job raising us, teaching us right from wrong, the importance of strong values, and being a strong family. Throughout this entire period we’ve been working together as a team dealing with new issues every day. We’ve never dealt with terminal cancer, Parkinson’s, making sure our parents will and their finances are in order. We’re learning together every day. Many families fall apart during times of tragedy. We’re getting stronger and stronger and handling every issue as it arises. We weigh the pros and cons and make a decision based on the facts that we know and what our gut is telling us. Most of our decisions are based on our intuition since we rarely get consistent information from the health care providers. They’re afraid to share too much information because they’re afraid they’ll be sued if they are wrong. It’s a sad situation in health care today.

I have so much more to be thankful for. My wife, children and I are healthy and happy. We live in a fantastic place and we have the greatest friends ever. I’m so overwhelmed by the loving support that people are offering. Even people I thought were just acquaintances have become very close fiends. My circle of friends has multiplied. I have so many friends that will be lifelong friends as result of this difficult period. I’m so thankful that I have the level of support their offering because I really need it. I know they are there for me and I’ll be there for them when they need me.

What is there to be thankful for? No matter how bad things are in your life there’s always something to be thankful for. As long as you wake up in the morning and you’re still breathing, you have something to be thankful for.

Happy Thanksgiving everyone and I love you Mom and Dad!!

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• Discomfort in the stomach area
• Feeling full or bloated after a small meal
• Nausea and vomiting
• Weight loss

• Tremor. This often starts with a slight shaking in your hand or even one finger. Sometimes hand tremor causes a back-and-forth rubbing of your thumb and forefinger known as pill-rolling. Tremor may also develop in your legs. These signs may occur on one or both sides of your body and may be more noticeable when you’re under stress. Although tremor can be very distressing, it’s usually not disabling and often disappears when you’re sleeping. Many people with Parkinson’s disease do not experience substantial tremor.
• Slowed motion (bradykinesia). Over time, Parkinson’s disease may cause a slow, shuffling walk with an unsteady gait and stooped posture. And leg muscles may freeze up, making it hard to resume normal movement. This is especially distressing because it can make performing the simplest tasks difficult and time-consuming.
• Rigid muscles. Muscle stiffness (rigidity) often occurs in your limbs and neck. Sometimes the stiffness can be so severe that it limits the size of your movements and causes pain.
• Impaired balance. Your posture may become unstable as a result of Parkinson’s disease. Often this problem remains minor for many years.
• Loss of automatic movements. Blinking, smiling and swinging your arms when you walk are all unconscious acts that are a normal part of being human. In Parkinson’s disease, these acts tend to be diminished and even lost. Some people may develop a fixed staring expression and unblinking eyes. Others may no longer gesture or seem animated when they speak.
• Impaired speech. Many people with Parkinson’s disease have some trouble speaking, and their voices often become monotonous and very soft. This may be a special problem for older adults because the soft voice of a person with Parkinson’s disease may not be audible to a spouse with poor hearing.
• Difficulty swallowing. This may develop in the later stages of the disease, but except in rare cases, most people who have trouble swallowing can continue to eat on their own.
• Dementia. A small percentage of people with Parkinson’s develop this mental disorder — which affects the ability to think, reason and remember — late in the course of the disease. Although it’s often associated with Alzheimer’s disease, dementia can also occur with other conditions. In Parkinson’s, the onset of dementia is often marked by slowed thought processes and problems with concentration.

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The house is gone, Mom and Dad are living in a nursing home, Dad is hanging tough and we’re contemplating the next move. If Dad’s going to be around for a while we’d like to move them closer to us. On the other hand, they’re getting settled, as much as you can get settled in a place like that, and they have lots of visitors every week. If we move them to Cleveland or San Francisco, we’ll be their only visitors. Family and friends are important right now and they have either family or friends depending where they live. We can’t keep flying back to visit for long periods of time especially with no place to stay. If we move them, we’ll see them a few times a week but they won’t know anyone. It’s a hard call.

Medicare is paying for hospice for Dad and Mom is paying her own way in respite stay. We’re also paying about $8000 a month for Dad so the monthly cost is around $13,000. So expensive for minimal care. What’s wrong with our health care system. Most people can’t afford to pay $13,000 a month at this stage of their life. Luckily Mom and Dad saved their money and invested well. Who knows what would be happening if they didn’t have money. I guess they’d be living with us and we’d be paying for their care. Their medical expenses are covered by Medicare but they don’t really have any medical expenses now. It’s just palative care that we’re paying for.

We’re exploring the cost to move them to California and it’s expensive. To fly Dad here it’s going to be anywhere from $12,000 to $30,000 for just the flight. I wish we knew if he was going to last a while because that’s a lot of money to spend if he’s passing soon. We need the magic crystal ball so we can see the future. We hate to disrupt him now because moving is so traumatic but we’d like to be with him as much as we can. There are no easy answers and nothing is getting easier. This really sucks!!

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On Friday the cleaners finished moving out the final clutter from the house and its now completely empty. I wasn’t there to see it but I still feel devastated. When I left last week the house was about half empty and it was hard to see. I can’t imagine how I’d feel if I saw it completely empty. Mom stopped by on Friday to take a look and she was very upset. In just over 2 months her entire life was pulled out from under her. Everything she accumulated over 56 years of marriage has been removed from the house in an instant. She’s living in a studio apartment in assisted living with a fraction of her possessions. Many things were shipped to California and even more things were sold, donated or trashed. It’s unbelievable how fast this happened.

Dad is slowly getting weaker but it seems like its related to the Parkinson’s and atrophy from not being able to walk. We’re so confused because nobody knows why this happened to him so fast and nobody’s trying to find out. The cancer seems to be in remission or growing very slowly so it’s not affecting him. The new medication has controlled his tremors but they’re doing no physical therapy so he’s withering away physically. He’s so weak he can barely sit up and he’s regressing quickly. Hospice wants to figure out what’s happening so they can make him comfortable. If he’s going to be around for a few months or even a year we want to make him as comfortable as possible.

Now that Medicare has run out we’re paying a fortune for his care. We’re paying about $8000 a month for Dad and another $4000 a month for Mom. The worst part is that they’re not doing anything for Dad except changing his diaper a few times a day and moving him from the bed to his chair and back. No other care is being done. So why are they calling it skilled nursing? There’s no skill involved with what they’re doing.

Now we’re exploring the possibility of moving Dad to California so we can be near him. With no home to stay in we’ll have to stay in hotels when we go back to Philadelphia. Connie and I are self-employed so our businesses have taken a huge hit. We haven’t been around to keep the business running so we’re both struggling. We can’t continue flying back and forth but we also need to be around to help out my parents. They can’t function without us so we’re in a horrible position. We don’t want to move Dad in his condition but we’re spending a fortune for his care and our loss of business. We want to do what’s best for him but we need to care for ourselves also. There are no easy answers and we’re exhausted, frustrated, sad, and starting to crack.

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