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.

Popularity: 2% [?]

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.

Popularity: 2% [?]

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.

Popularity: 2% [?]

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.

Popularity: 2% [?]

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.

Popularity: 2% [?]

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.

Popularity: 2% [?]

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.

Popularity: 2% [?]

Day 21 – Three weeks and counting. I’m going home tomorrow barring any unseen events today. I’ve been away for three weeks and I need to get away from this to recharge my batteries and to take care of everything at home. Connie is coming on Thursday and Mary will be here to visit with Mom and Dad.

Mom fainted again in the hospital yesterday in front of a couple of doctors. Her blood pressure seems to have stabilized but she’s still dizzy. It could be stress, an ear infection or something worse. They did an MRI last night and they’re doing more tests today. She’s so depressed and wants to be with Dad more than anything but obviously they cant’ release her until she’s better. She said they don’t seem to care that her husband is dying and she needs to be released. We’re trying to comfort her but she’s only focused on getting out to see him.

Dad is fading fast. His short-term memory is going quickly and he keeps asking the same questions over and over. “Are my suitcases packed for the trip?” or “What time is the plane (or boat or train or car) leaving?” It’s hard to have a conversation with him now and it really hurts. He can barely push himself up from the wheelchair which he could do last week. He’s noticeably weaker than just a week ago. I hate leaving at this point but he could hang on for a few months like this. He’s still eating like a teenager and keeps asking for more food. My guess is that he’s going to fight to the finish which will only prolong this misery.

Our biggest fear is that Dad dies before Mom gets out of the hospital which would devastate her. She’s already depressed and upset and this would put her over the edge. She’s losing her will to live because she’s scared to be alone. My father took care of her and did absolutely everything for her. He cooked, cleaned, shopped, took care of the finances, investments, yardwork and everything else. She’s definitely a princess and won’t be able to survive on her own. Like a good Greek, he pampered her and cared for her for almost 60 years. It’s going to be hard for her to learn how to do all of this with her already failing health. She may even go before him because she’s so scared.

Today we have a meeting with the assisted living facility. They’re going to give us a report on how Dad is doing and what they recommend for him. This is a great assisted living facility with professional and caring staff. After the nightmare we went through with the Medicare dumping, this is a breath of fresh air. The healthcare system is a mess but there are high quality places that do care. Medicare is picking up 100% of the first 20 days, then a large percentage until 100 days. We don’t expect Dad to last past 100 days but if he does then we have to pick up the rest of the tab. Hopefully this will be an exception to what we saw in Sicko and Dad will be able to pass with dignity.

Popularity: 2% [?]

It’s not easier being away from the situation. In fact it may be harder. Connie is in Philadelphia comforting Mom and Dad which is really hard for her. Mary and I were there together which made it easier. Also we had my nephew Tommy who is the greatest. Tommy is a downs syndrome child and kept us entertained the entire time we were there. He helped relieve the tension with his lightheartedness. Tommy knows exactly what’s happening and he’s very sad but he helped keep things in perspective for us in his unique way. What a gift he is to our family.

Mom is adjusting to the facility even though she still hates it. She’s spending quality time with Dad as he fades away. Mom is getting physical therapy and finally learning how to walk with her artificial knees five years after the fact. When she had her knees replaced she only received one week of physical therapy. The doctor said she didn’t need more than that and she’s been hobbling ever since. Medicare must have played into that decision not to pay for her physical therapy. She’s making tremendous progress after just two sessions and is encouraged by the results.

Mom also has a great roommate who recently lost her husband to cancer. She’s helping Mom process the fact that Dad is dying and comforting her. My sisters say she’s an angel that was sent to help us at the right time. She’s helping Mom understand why Dad is failing and holding her hand through the death process. At first Mom was resistant to talking with her but she’s warming up to her quickly. The universe does provide everything we need at exactly the right moment.

Dad is getting weaker and weaker by the minute. He’s still doing physical therapy which keeps him busy but exhausts him. We’re still not sure if it’s right to keep doing it knowing that he’ll die soon but we’re trusting the experts who told us they will do it as long as he’s showing progress and it’s not hurting him. He looks forward to the activity each day since he was never one to just sit around. I think the end is coming very soon because he’s always very cold and his memory is getting worse. He’s living in a dream land imagining all sorts of crazy things and he seems happy. I think he’s forgotten that he’s dying and he told someone yesterday that 30 of his friends dropped by to see him. They said they came by to see him because he’s dying and he laughed at them and told them they were crazy. He doesn’t seem to be in pain and he’s comfortable. That’s all we can ask for. We’re going to start hospice soon, as soon as they tell us that he can’t do the PT anymore.

Popularity: 2% [?]

Yesterday I flew home after three weeks in Philadelphia. It was hard leaving, knowing that my parents are going to be living in a temporary home until Dad passes. It’s hard enough emotionally knowing that Dad is dying soon but having to move somewhere unfamiliar makes it so much harder.

Mom’s blood pressure continues to fluctuate and the doctors don’t know what’s causing it. It dropped as low as 42 over 30 yesterday and she fainted in front of the doctors. They continue to monitor her and tweak her medications but they can’t figure out what’s causing it.

After dropping to 80 over 50 around 11 AM her blood pressure returned to somewhat normal shortly after and they released her from the hospital an hour later. Obviously another Medicare move because they couldn’t figure out what’s wrong. If Medicare doesn’t pay any more then discharge them! Our healthcare system is so broken!

Now Mom is moving into the Skilled Nursing section of the Assisted Living facility where Dad is. Medicare will pay for her rehab since she was in the hospital for over 3 days. Medicare continues to pay as long as she shows rehab progress. Then she’ll move into Assisted Living so she can be near Dad.

Mary said Dad is really failing mentally. He tried to escape to find us because I wasn’t there yesterday. He was complaining that he can’t get anyone to help him make plane reservations to California. Then he told the nurse to make sure she makes breakfast reservations for today for 9 people. It’s so sad and so hard to watch. In a way I’m glad I’m not there to see this but I wish I was there to help. I dread going back in a few weeks because he’s going to be so much worse. We need hospice to come in and help us work thru this. Mom has to tell him it’s okay to go and that she’ll be okay without him. The problem is that she won’t be okay without him and needs him. She’s so weak physically and mentally because she’s always been cared for by someone. What a mess!

Popularity: 2% [?]