Dad’s riding a wild roller coaster, changing almost hourly some days. He’ll look terrible one moment and great an hour later. It’s like watching the movie, The Mask, with Jim Carrey. His face changes so dramatically almost instantly. His arms are shaking almost all of the time and his body shakes occasionally. He’s losing control of his muscles and he’s trying so hard to move.

I did some research on the internet and it looks like he’s in the advanced stages of Parkinsons. The signs of Parkinsons are:

• Tremor (shaking)
• Slowness of movement
• Rigidity (stiffness)
• Difficulty with balance

Other signs of Parkinson disease may include:

• Small, cramped handwriting
• Stiff facial expression
• Shuffling walk
• Muffled speech
• Depression

Dad has all of these symptoms. He thinks he’s falling over most of the time and he’s leaning to the right. At times we can’t understand him and he’s speaking quietly. He was shuffling when he could walk and now he can’t walk at all. He doesn’t seem depressed because he’s hallucinating a lot and living in a different reality which is actually better than being depressed.

Now we’re going to pursue treatment of the Parkinsons because it looks like it’s what’s making him uncomfortable. There are no signs that the cancer is spreading rapidly and causing discomfort. We want to make him as comfortable as possible and treating the Parkinsons looks like our best bet. If the medication could stabilize his balance and slow down the shaking he would be much more comfortable. There’s no guarantee that it will help but it’s worth a shot. Medicare will pay for the medication so what do we have to lose? We’re so frustrated that nobody has diagnosed Dad with Parkinsons. Once he was diagnosed as Stage 4 cancer they’ve written him off as dead. He’s far from dying because he’s a fighter and will never give up.

Since the Parkinsons seems to be dominating his body and the cancer may not take him any time soon, we’re looking into moving Dad to Cleveland or San Francisco so we can be near him. It would be much easier if he lived near us so we wouldn’t have to uproot our lives to be near him to help out. We don’t know if it’s possible but we’re going to check out the feasibility of a medical transport. It’s going to be expensive but it’s more expensive having 3 of us continually visiting him especially since 2 of us are self-employed and we’re not earning money when we’re here in Philadelphia.

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Dad has declined to a new low in recent days. The seizures have taken their toll on his mind and body. He’s sleeping most of the time and when he’s awake he’s in never-never land. He mumbles most of the time and we can barely understand him. Occassionally he’s strong enough to talk and make sense but it only lasts for a short time.

Yesterday just before lunch he was sitting in his wheelchair he had a strange look on his face. We’ve never seen this look before and it was very scary. It was like he was about to have another seizure but it was going to be a huge seizure. We were thinking maybe this was it. He wound up like he was going to start seizing and he would just nod off quickly. His head would drop and he would fall asleep quickly followed by a surge of energy that jolted him awake. It was so scary to watch and I had to walk away to pull myself together.

I want to be here when Dad passes but then again I don’t want to see him suffer. I never thought I would see the day when I had to care for my parents, taking care of them like they were babies. Dad is completely incontinent now and has only brief moments of making sense. The Dad I know from the past is gone, long gone. His body is there but his mind has disappeared. His personality is gone and now he’s imagining that the nurses are roughing him up when they put him into bed. He was always a kind, positive person and now he’s just a shell of his old self. He doesn’t deserve to suffer a long, drawn out death but its happening because his spirit to live and to help everyone still lives in his disease-ravaged body.

There’s something wrong with this idea of keeping us alive for another 10 years by pumping us full of pills. The drug companies are creating new medicines every day to keep our hearts beating longer but the quality of life isn’t there. The assisted living facilities are full of older people that are still alive physically but dead mentally. Until they can keep our minds alive and vibrant it doesn’t make sense to keep our bodies alive.

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We met with the nurse from hospice the other night. She reviewed Dad’s charts and talked with the staff that’s caring for him. He’s maintaining his weight, eating well, has a strong spirit and doesn’t look like he’s ready to go. The hospice worker agreed that he’s not ready for hospice and he’s doing as well as can be expected. We’re holding off on hospice care for now and continuing the current plan of care.

Dad slept almost all day Monday, Tuesday and Wednesday after his seizure episodes. He woke up around 7 PM Wednesday night well rested and looking great. It was amazing to see how well he looked and acted after his long slumber. He did really well until late Thursday afternoon when he hit another wall. He was up and in his wheelchair all day Thursday and spent a lot of time outside. When he hit the wall we got him into bed for a nap. He slept for a while and woke up for dinner but he wasn’t very hungry. He was confused and disoriented. He ate a little and was hallucinating a lot. Lots of visitors in the room that night.

At one point he yelled “fire, fire” because he saw a burning cigar on the floor that was burning the carpet. Then he told me that he was negotiating with a woman when he realized she was drunk. He pointed to the corner of the room and said “Look, she’s do drunk she passed out on the floor” The nurse told me he told her to call the police because there was a drunk man in the bar causing trouble. 

His hallucinations are so real and the expression on his face is terrifying. He’s really living these hallucinations and it’s interesting to see him experiencing many of his fears in life. Most of the scenarios are set in our restaurant about 20 to 30 years ago. He’s reliving his daily life in the restaurant, cooking and serving people all day long. His hands are in constant motion when he’s asleep as he prepares bread, rolls, and meals for his customers. The brain is an incredible thing the way he’s moving in and out of the past and present. He’s definitely on his way to the next stage. It’s only a question of how long he’ll be transitioning.

I really believe he’s holding on long enough for my mother to get strong enough to care for herself. In just 3 weeks she’s made tremendous physical and mental progress. When I left 3 weeks ago she was weak physically and mentally. She was emotionally breaking down, crying for help and manifesting physical problems to get attention. She’s now much stronger physically and she’s accepted the fact that he’s dying. She’s now able to help care for him on a limited basis which is great to see. She’s now returning the favor to him. When he knows she can survive on her own I’m sure he’ll pass in peace.

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Mom is making tremendous progress in rehab and is ready to be released. She’s much stronger, stands up straight and can walk confidently. What a miracle! Just one month ago she couldn’t walk 20 feet with her walker without complaining about pain. Today she’s walking over 200 feet with her walker and getting around without her walker (when they don’t see her at the facility!). According to the Medicare standards, she’s ready to be released from rehab. What a success story!

We’re now deciding whether she should stay in the skilled nursing facility with Dad or move to the Assisted Living facility which is next door. If she stays with Dad it will keep him more comfortable but she won’t have the freedom that comes with assited living. She can come and go as she pleases in assisted living but she’s restricted to the facility in skilled nursing. Also they have to bathe her and its only twice a week which embarasses her. I don’t blame her a bit. I can’t imagine getting only 2 showers a week and having someone wash me.

We’re also meeting with hospice today to see if it’s time to bring them in. Dad is continuing his roller coaster of ups and downs so we don’t know how long he’ll live. After his weekend of seizures, he slept about 20 hours a day for 3 consecutive days. I’ll see how he is today. He was wide awake and alert when I left him last night and didn’t look like he was going to sleep much.

I’m researching options on the internet and looking for any advice. We’re new at this and we need as much help as possible to make these decisions.

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Do you remember the movie Groundhog Day? I feel like I’m living it. If you didn’t see the movie it’s a story where Bill Murray keeps waking up every day living the same exact day over and over again. I’m stuck in a pattern of ups and downs with my parents. A few good days and a few bad days. Dad’s good days are very limited now and you can now measure his good times in hours. He’s too weak to have a full day without something happening.

I was supposed to go home yesterday but I couldn’t leave after Dad’s weekend of seizures. The seizures finally stopped after a few days and he was exhausted. He slept almost 20 straight hours after the long weekend and his hands are shaking uncontrollably now. He’s having trouble gripping things and I had to feed him for a couple of days. He’s now figured out how to hold his fork in his other hand which is a little stronger but he has trouble getting his eye-hand coordination to work. He shakes violently trying to get the food into his mouth and he doesn’t stop until he succeeds. I’ve never seen anyone so determined in my life. Dad is teaching me to never give up and never stop trying. He’s one hell of a guy.

Mom is doing very well physically and not so well mentally. She’s having frequent memory loss and keeps asking what day it is. I keep telling her what day it is and a few minutes later she asks again. She’s walking much better now and looks strong. She’s walking confidently and trying to help Dad as much as she can. I’m so proud of her progress because a month ago she couldn’t walk 20 feet with a walker. Now she’s walking over 200 feet with her walker and walks without a cane or walker around the facility. I really thought she was going to be in a motorized wheel chair the rest of her life.

I’ve been exploring hospice options this week. It’s time to start hospice for all of our sake. Medicare is still paying for 80% of Dad’s care but he’s not doing physical therapy any more. He thinks they’re working him for 3 hours straight and he has it stuck in his head that they’re overworking him. Obviously he’s too weak to do it so we need to transition into the next phase. I’m meeting with a hospice provider today and it’s time to get started.

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I arrived back in Philadelphia last night to visit my parents. Mom is doing very well and her physical therapy is doing wonders. She looks much stronger than I’ve seen her in years. She’s standing up straight without the help of her cane or her walker. She can walk over 220 feet with her walker which is a miracle. Just 3 weeks ago she couldn’t walk more than about 20 feet without getting tired and stopping. They think she’ll be strong enough to move into assisted living next week once she meets the Medicare requirements to move out of the rehab facility. 

Dad was in bed when I arrived last night and he looked good. His face looked strong and he has good color. When I left a few weeks ago he looks gaunt and weak. He’ s not strong enough to get up by himself and they have to use a lift to get him into bed at night. He gets very tired quickly and has little stamina. I’m sure the stage 4 cancer is taking it’s toll but I think the strokes did more damage. Mentally he’s in and out. He’ll be having a normal conversation then drifts off into a fantasy world in the middle of the conversation.

We’re trying to figure out if it’s time to stop physical therapy and start hospice. In some ways he’s strong and in other ways he’s wiped out. He doesn’t look like he’s ready to die anytime soon but he can look really bad quickly. He seems to be in a cycle of a few good days followed by a few bad days. It’s hard to say how much longer he has.

The facility is doing an okay job caring for him. Senior care is so hard because it’s very labor intensive. They have limited staff that works very hard doing almost everything for everyone on the floor. Elder care is such a big business and so necessary as this generation ages.

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I found a great resource at www.gilbertguide.com It’’s one of the best resources I’ve come across so far. Many of these resource sites are just in it to make money but the Gilbert Guide seems to be in it to really help people find quality care for their parents. They are limited to a few cities now but they’re expanding rapidly. Thank you Gilbert Guide!!

If you come across any good resources please comment on this blog or add them to our forum. I’ll share them with the group as you post them.

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Dad went to the cardiologist today. We were debating whether it was worth transporting him to the appointment because we thought it might be too traumatic for him. My mother insisted on letting him go because he really likes his doctor and it would lift his spirits.

Connie went with Dad to the doctor and it was well worth the effort. The doctor was the first doctor to sit down and explain what was happening. It turns out that Dad did have a stroke according to the MRI. The neurologist at the hospital read the same MRI and told us that he hadn’t had a stroke and discharged him from the hospital. Can you spell malpractice???

I hope Michael Moore makes a Sicko II based on senior care because I have enough material for him. If he doesn’t make the movie I’m going to make my own movie. We are so pissed off right now because both of my parents were living a normal life just 6 weeks ago and now they’re trapped in a skilled nursing facility left to die. The facility provides very minimal care and they have to make arrangements in advance to see their own doctors. It takes at least a week to get an appointment and make transportation arrangements.

I was up most of the night last night upset that they discharged my father from the hospital before he was ready and we watched him having a stroke in the first rehab facility. For a few days he was very uncomfortable and kept convulsing. His face was distorted on one side and his other eye wouldn’t close. His eyes kept rolling back into his head as he winced in pain. We thought that he was just dying and sat there hoping he would go quickly.

No doctor at the hospital or the rehab facility ever sat down with us and discussed his condition. Nobody ever said anything other than a phone conversation where the oncologist said to spend as much time with him as possible. He wouldn’t commit to a timeframe for Dad’s death and just said it was advanced. Does that mean one week, one month or one year?

Dad is a fighter and isn’t giving up. If anyone could put cancer in remission, it’s Dad. He told me he was fighting for 2 people and he wasn’t going to give up. We’d like to know if they can do another cat scan to see if the cancer has spread in the past 6 weeks. If it’s not spreading then we want to move him closer to us. Unfortunately the strokes have degraded Dad mentally and physically but he’s still fighting. He’s regained a lot of his mental capacity but it’s day to day. Physically his facial muscles are back to normal and he shows signs of getting stronger in some ways.

Mom wasn’t feeling well for a few days and we wanted her to see the doctor that’s on staff. She was dizzy, had headaches and pain in her neck which could be signs for a heart attack or a stroke. She complained for days and they kept giving her Tylenol which didn’t help. Connie asked numerous times to have the doctor come check her out and they said he would see her on Friday. The doctor came and left without seeing her even though Connie went to the nurses station 5 times to remind them. She finally called the administrator who called the doctor back in.

He adjusted her medication which we suspected was the problem. That’s why she was in the hospital last week. Why is this so difficult? We’re so pissed off right now and so upset that our parents are being left to rot in our horrible health care system. It doesn’t matter which facility they’re in. They are all horribly understaffed, out to make as much money as possible and couldn’t care less about the patients. My parents have plenty of money to pay for good care but it doesn’t matter. Money doesn’t buy good health care and peace of mind when you’re sick in America.

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Mom seems to be in worse shape than we thought. We knew she was forgetful but she’s really disoriented in the skilled nursing facility. She doesn’t seem to know where she is and how to get around the facility. The building consists of one hallway that runs the length of the building. If she leaves her room and goes right she’ll end up at my father’s room. If she goes left she’ll end up in the dining room. For some reason she gets lost every time. It’s so sad to see.

Dad thinks he finally made it to California. He went to be one night in Philadelphia and woke up in California. For weeks his biggest concern was getting ready for the trip and getting on the plane. Now that he’s in California mentally I wonder what he’s going to worry about. Physically he’s getting weaker every day. He still has moments when he’s rested enough to be his old self but it doesn’t last long. All of his energy is going towards fighting off the cancer and unfortunately he’s no match for this horrible disease.

Looking back we noticed signs about a year ago that something wasn’t right with Dad. He was taking more naps than usual and he stopped taking his daily walks. He was having trouble getting started when he stood up and walked leaning slightly forward. The doctor said it was a disk problem in his back and my father chose not to treat it. We just thought he was getting old but he must have known it was something much bigger.

The past year has been focused on getting everything in order for my mother. He was making sure everything was done so she would be all set once he passed. Unfortunately his plan to finally move to California came too late. If he would have moved a few years ago we could have spent some quality time with them and this transition would be much easier. This transition would never be easy but dealing with it from 3000 miles away makes it very challenging.

Medicare is still paying the bill for both of my parents. I’m not sure how the physical therapists are justifying that he’s making progress but they are. Mom is making progress with her therapy and a counselor is going to start visiting. We’re also talking to hospice so they can give us an idea of what they can do for us and when they think it’s time to stop the therapy.

I’m heading back next weekend for four days to lend a hand. Hopefully I won’t have anything to do except spend time with Mom and Dad. It’s going to be very hard seeing Dad after being away for two weeks. I’m sure he’s much weaker.

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My parents are settling into their new home at the skilled nursing facility. Since I’m not there my sister Connie is filling me in on the details. Connie is staying there for another week and then none of us will be there to help out. It’s time to leave my parents alone so they can learn how to live without us. We have no idea how long Dad will last and he seems to have reached a plateau. He’s not declining as fast as he was physically and mentally he seems to have stabilized for now.

We’re not sure how long this will last but we can’t be there constantly to help out. The facility is taking good care of them and Mom is making progress in physical therapy. Dad is also progressing physically according to his care takers. We don’t know how much progress he’s making but he’s progressing enough that Medicare is still paying his bill.

We’re debating what to tell my father. His doctor told him that he had stage 4 cancer and was dying but he seems to have forgotten that he’s dying. He’s so determined and focused to help my mother that he doesn’t talk about it. His focus is on getting better so he can move to California. He’s still asking when the plane is leaving and wants desperately to get Mom to California so we can care for her. It seems to be his mission to make her safe. I want to tell him the truth that he has cancer and he’s not going to California but my sisters want to let him live happily in his fantasy world. I don’t think he’ll pass as long as he thinks he’s going to get Mom to California where she’ll be around us.

We’d like to know how much the cancer has spread in the past month or if it’s not progressing as fast as they predicted. He could still be anemic but they haven’t told us what his hemoglobin level is. If it’s low it could explain his memory problems and halucinations. If he could walk on his own, even with a walker, we could move him to California or at least back into his home and bring in home care. We’re going to try to get some answers from the doctor this week. If he’s getting worse we want to start hospice so he can mentally prepare to move on.

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