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The other day my friend Paige asked me if my mother drove a gold Buick. He’s never seem my mother’s car so I was wondering why he asked. His theory is that all senior citizens drive either a gold Buick, a green Lincoln Towncar or a Cadillac. Well he was right because my mother has a gold Buick!

Mom’s been dying to get her California driver’s license so she can run down the street to Longs drug store to pick up odds and ends. We have a new running joke in our family these days "Have you been to Long’s today?" It seems like almost every day we’re running Mom to Longs because she forgot something. While it would be great to let Mom drive the 200 yards to Longs so we don’t have to, it scares the hell out of us to think of her behind the wheel. Mom is very forgetful these days and she’s never driven in California. She did very little driving in Philadelphia so we’re afraid to let the drive alone. We were counting on the DMV to deny her so they could be the bad guys.

Mom scheduled her appointment at the DMV to take her written test and her eye test. She doesn’t see well so we were thinking she wouldn’t pass the eye test. If she passed the eye test there’s no way she would pass the written test. I drive Mom to the DMV and we check in for her exam. They ask for 2 forms of ID and she only brought her Pennsylvania license. We have to reschedule for another day when we have her passport!

We return a few weeks later and Mom is ready to go. She’s been studying the DMV manual and taking practice tests online. My fingers are crossed that she won’t pass!! The clerk has her read a few lines of the eye chart with both eyes. She reads everything perfectly. They she has to cover her left eye and she can’t read anything. The clerk has her try a few more lines and she still can’t see them. I’m getting excited that she won’t pass!! The clerk says "It must be the glare. Come over to this machine and we’ll check you out." Damn it if the clerk didn’t miraculously let her pass the eye test!

On to the written exam at another station. The clerk hands her the written exam and Mom heads off to take the exam. I’m thinking she can’t remember what she had for breakfast so there’s no way she’ll remember the stopping distance of a car traveling 60 miles per hour. After about 20 minutes Mom heads back to get her test corrected. I see the clerk marking off a lot of the questions. Either Mom got a lot correct or the clerk is marking off a lot of incorrect answers. The clerk hands back the test and tells my Mom to answer 3 of the questions again. Mom gets those 3 right and the clerk passes her even though she missed many of the questions on the other side of the test! Damn it!

Mom was really excited and proud of herself. It was nice to see her so happy but inside I’m thinking there’s no way I can let her drive. She’s going to get hurt or hurt someone else. Now we have to somehow keep the car away from her and convince her that she shouldn’t be driving alone. She wants her car delivered to her apartment tomorrow so she can drive to Longs! Wish me luck and watch out for those gold Buicks!

Tags: seniorcitizen driving, DMV, driver’s test

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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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We’re almost 3 full months into this mess. It all began in August when Dad spit up a little blood which turned out to be a bleeding ulcer. The follow up tests revealed his stage 4 cancer but he hasn’t shown any signs of having the cancer since. According to different medical websites the symptoms of stomach cancer are:
 
Signs and symptoms of stomach cancer
  • Discomfort in the stomach area
  • Feeling full or bloated after a small meal
  • Nausea and vomiting
  • Weight loss
Dad doesn’t have any of these symptoms. All of his symptoms are related to his inability to control his limbs and muscles. He has all of the symptoms of Parkinson’s according to mayoclinic.com which include:
Signs and symptoms of Parkinson’s
The earliest symptom of Parkinson’s disease can be as subtle as an arm that doesn’t swing when you walk, a mild tremor in the fingers of one hand or soft, mumbling speech that’s difficult to understand. You may lack energy, feel depressed or have trouble sleeping. Or you may notice that it takes you longer to shower, shave, eat or do other routine tasks.
Other signs and symptoms of Parkinson’s disease may include:
  • 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.
Dad has all of these symptoms and the mystery is why he failed so quickly. One day he walked into the hospital and he’s never been able to walk again.
 
I’m beginning to realize that this isn’t a small bump in the road of my life. This is a huge, life changing event and things will never return to the way they were. Dad will never walk again. For the rest of his life he’ll be bedridden and totally dependent on caretakers. Mom will never live independently and have the simple freedom of driving to the mall to go shopping or go to a movie. Her mental state will prevent her from every driving again. Their home is gone and everything they accumulated over their lifetime is gone. Never again will we all get together for Thanksgiving or Christmas as a family unless we meet at their room in assisted living. I guess with Thanksgiving approaching its beginning to sink in and it really hurts.
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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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Dad had a rough day yesterday. He was so tired that he couldn’t talk. He just laid in bed all morning and couldn’t even chew his food. The nurses got him out of bed for lunch but he really struggled to chew his food. He was just wiped out and I thought this could be the day he passes. We don’t know if he was just exhausted or if they gave him something to help him sleep or both. Hospice was talking about giving him valium at night so he could sleep but we’re not sure if they started giving it to him. I’ll see today when I go visit.
 
Dad is getting very depressed and it’s hard to watch. He’s always been “over the top” with enthusiasm and positive thinking but this is taking it’s toll on him mentally and physically. He’s been telling people that he’s going to die as his default response when they ask him how he’s doing. He used to say things like “fantastic”, “great” and “wonderful” when someone would ask in the pass. Now he’s so frustrated and pissed about what’s happened to his life.
 
He’s been saying he wants to die but I guess he’s not quite ready. The counselor from hospice and been talking with him about the process of dying and he’s been thinking about it. Until now I really believe he thought he was going to beat this and return to his normal life. He’s been telling people he beat his stage 4 cancer and he feels a little bit better every day. His will and determination is unbelievable and he won’t pass until if he has anything to say about it. Dad loves life and loves serving people. His job isn’t finished in his mind and he still has work to do. We keep telling him that it’s okay to take a break and let people help him now.
 
Dad sees quitting as a weakness so he won’t give up. He hears my mother complain about her back and knee pain so he’s still trying to get better to help her. No matter now hard he tries he’s not going to return to a normal life. He’s arms and legs don’t work any more. He’s having trouble swallowing and struggles to breathe at times. The doctor says this aren’t symptoms of the cancer but they don’t know what’s causing this discomfort. Hospice wants to dig into this a little more so we can keep him as comfortable as possible.
 
We’re almost done packing up the house and the movers are coming this week. We sold or donated most of the furniture and items in the house. The rest will go to the dump which is really hard for Mom to accept. She wants’ to bring everything to California but she won’t have room. I try to explain that it’s not worth moving most of the things because it will cost more than if we replace it once we get to California. Also we can see what she’s going to need once she gets settled into an assisted living facility.
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This has been a really wild ride and we have no idea where we’re going next. To recap here’s a timeline of the events:
 
    1. Mid April – Mom and Dad come to California for their annual visit. We notice that Mom and Dad have less energy then they did the last time we saw them six months earlier. They’re content to sit on the couch and watch movies and television all day. They have no desire to sightsee in San Francisco which is one of their favorite things to do. They usually help out a lot around the house but now they contribute very little. Dad tried to cook dinner for us and he couldn’t stay focused to finish the meal. I had to take over for him and finish cooking. We thought they were just getting old and slowing down. They didn’t look sick or in pain but were significantly slower than before. We convinced them to sell their house in Philadelphia and move to California.
    2. Early June – they finally get the house ready to sell and put it on the market. Mary and I fly back to Philadelphia to help them pack up the house. Dad is even slower than he was in April and had periods of absentmindedness. We tried to convince them to move immediately even if the house wasn’t sold but they refused. Dad was afraid to leave the house empty.
    3. Late August – Dad spits up a little blood one morning and ignores it. He said he was going to the doctor later in the week and could wait. We convinced him to go to the emergency room. They admitted him to the hospital immediately because he was bleeding internally and was very anemic.
 They do a series of tests and determine that Dad has a hiatal hernia and Adenocarcinomas stomach cancer. Two doctors said he was stage 4 cancer and it was too late to start treatment. They wouldn’t give a timeframe but they said spend as much time as possible with him while we still can. We take this as he’s going to die very soon.
 
Dad walked into the hospital and will never walked again. He’s had trembling for about a year and was on medication for it. The doctor never made a bid deal out of the trembling. Once in the hospital we notice frequent seizure-type episodes that last about a minute each. Dad has no control of his body but we can touch him to comfort him. This stops the seizures so they are not called seizures but tremors.
 
It looks like Dad has all of the signs of Parkinson’s. He was shuffling when he could still walk and his hands shook at times. His speech is now slurred most of the time and he’s mentally confused a lot of the time. He has all of the major symptoms of Parkinson’s but they’ve never officially diagnosed it or treated it other than the light doses of medication for the tremors.
 
Once they diagnosed him as stage 4 cancer, they stopped all treatment for everything. It’s been palliative care only. They’re not treating cancer or Parkinson’s. He has no signs of the cancer according to many medical websites. He has no abdominal pain. He’s still eating like a teenager and he hasn’t lost weight. He’s telling everyone that he did have cancer but he beat it. And I believe that maybe he did beat it or beat it into remission.
 
They told us he had an aggressive form of stomach cancer and we’ve been making our decisions based on that. I see now that many forms of stomach cancer are slow growing and patients often live up to 5 years with it. We’re now thinking about getting a second opinion and starting treatment for Parkinson’s. We never bothered to get more opinions because 2 doctors said he was stage 4 and it wasn’t worth treating. Tomorrow I’m going to talk to the hospice nurse and see if we can pursue some more opinions. If we put him in the hospital for 3 days of tests, he’s eligible for Medicare again and we’ll save at least $10,000 a month for his care.
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I’m learning so much about life watching Dad navigate his final days. We start out life being cared for by our parents. We’re helpless and they have to do everything for us because we’re not strong enough to do it ourselves. We can’t lift anything because our arms aren’t strong enough. We can’t walk because our legs aren’t strong enough. We can’t lift our heads because our neck isn’t strong enough. We can’t feed ourselves because our eye-hand coordination isn’t developed.
 
When we get old we become helpless and dependent on others to help us. We can’t lift anything because our arms aren’t strong enough. We can’t walk because our legs aren’t strong enough. We can’t lift our heads because our neck isn’t strong enough. We can’t feed ourselves because our eye-hand coordination has disappeared.
 
Dad is at the stage of life where his mind is strong but his body has failed him. He can’t walk. His arms barely move. He tries to feed himself but he can’t grip anything. If he does grip it, he can’t get it up to his mouth because his eye-hand coordination is gone. He can barely talk because his mouth doesn’t work very well. Some words are clear but he can’t complete a sentence no matter how hard he tries. He tries like hell but the words just don’t come out in a way that we can tell what he’s saying.
 
Babies love routines and I see Dad loves his routines. He needs to eat on a regular schedule and he needs to sleep on a regular schedule. He does much better when he knows the people that are caring for him and they care about him. A baby gets familiar with it’s parents and gets into a routine with them. When the routine is disrupted the baby cries and gets upset.
 
Dad was in a nice routine at the skilled nursing home and he created a bond with a few of the caregivers. They enjoyed helping Dad and he opened up to them because they care about him. The other caregivers don’t have a bond with him because they don’t seem to care about their job. To them it’s a paycheck and they do as little as possible. Fortunately most people that are caregivers want to help people and they care about their patients. It’s more than a job to them. It’s too hard of a job and too emotionally draining to work in health care without caring about your patients.
 
We’re really wondering why they decided to move Dad to a different wing today which really disrupted his routine. He was already having a tough day physically when they moved him because they said he had too many visitors and was disrupting his roommates. Dad’s a long term patient. His roommates are men that have had knee surgery or other surgery and need a week of physical therapy to recover. They come and go. Dad doesn’t’ get to go home so why did they move him and not his roommate? These are health care professionals with many years of training and experience. They know old people like routines and get upset when they’re disrupted.
 
It took them 6 hours to move his bed into his new room. It took another 2 hours for them to inflate it and move him into bed. He spent most of the day in his chair waiting for his bed so he could nap. He really needed to nap today and he never got one. I kept asking politely when they were going to move his bed. The aides said they didn’t know when it would be moved. One nurse promised to get it moved but it never got moved. I had to go to the nursing supervisor after asking 5 different people to help my father. It took 3 hours to get him into bed after I spoke with the supervisor.
 
The health care system sucks. It’s a huge money machine and every facility is understaffed and full to the rafters with patients. It’s only going to get worse but they will always understaff them so they can make as much money as possible. It’s all about money!
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