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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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Another long day at the nursing home. It’s now near midnight and I’ve been going since 5 AM this morning. I’ve been staying up well past midnight and getting up before 6 AM every day. I spend most of the day with Mom and Dad at the skilled nursing/assisted living facility helping them out. In the morning I try to do some work for my clients and make phone calls to people in the area to set up services for my parents, arrange the movers, talk with our realtor, and other administrative tasks that my parents can no longer do for themselves.

The house closes on November 19th and we’re trying to get everything wrapped up this week. The movers give you a 3 day window when they can come and we want them to come next week so I’m under the gun. We had a garage sale last weekend and we’re getting rid of everything that Mom won’t need in California when she moves there. It’s really hard getting her to purge everything she’s accumulated over 56 years of marriage. So many memories. So much junk! Even much of the junk has sentimental value to me because I remember it from growing up. My parents throw away very little and they’re still using most of the things that we had in our house over 30 years ago. They are very frugal and use everything until it virtually falls apart. Our economy would be a disaster if everyone was as efficient with their money as my parents. I need to take note and change my spending habits!!

I called an agency today called Comfort Keepers to help out. They provide companion services to seniors. They run errands, to light housework, go shopping and do many tasks for senior citizens. They’re going to come in a few hours a day to keep Dad and Mom company. They’ll be there to comfort them and let Mom get away for a break during the day. She’s with Dad from 9 AM until 8 PM every day and it’s hard work. When I’m here it just wipes me out. We spend all day doing nothing but the day flies by. The day consists of eating breakfast, resting until lunch, going to the dining room and eating lunch for an hour, resting all afternoon, going back to the dining room for dinner and then back to his room to get ready for bed. Dad’s usually asleep by 8 PM but it’s a long, emotional day.

I usually do this routine plus talking to the doctors, nurses and administrators to make sure everything’s being taken care of. Now we have hospice involved since Medicare ran out so it’s another vendor to manage daily. If we add the Comfort Keepers I’ll need to coordinate three caregivers which could be a challenge. It’s worth a try because I can’t continue living here and not running my business.

Dad was tired today but had some good hours. He’s very tired because he’s excited that I came back to visit. He loves company and loves entertaining which he’s still doing. He can’t say much any more but he tries hard and still cracks us up.

He’s struggling to use his hands and arms now. His legs are almost totally immobile. Whatever this is, it’s making his muscles not work. If it’s Parkinson’s, it came on extremely fast. He told the hospice worker that he had cancer but he beat it. That’s his attitude and he’s the type that can beat cancer. Unfortunately the Parkinson’s is making life hell for him.

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I’m back in Philadelphia packing up the house because the closing is coming on November 19th. There’s still a ton of things to pack and I’m feeling more than overwhelmed. We have over 30 boxes packed so far and many more to go. I’ve been here for 2 days and I’ve made little progress. Running back and forth to the nursing home making sure Mom and Dad are okay consumes most of my day. I try to get some packing done but it’s hard deciding what goes and what stays. I also have a lot of work to do for clients and by the time I get to it I’m exhausted and it’s midnight. I’m sleeping just a few hours a day and I’m already exhausted.

Hospice started yesterday so in addition to everything else on my plate I have to deal with that transition. I’m not clear on what hospice is going to do and the aide at the nursing home refused to change my father before dinner last night. She said it’s not her job and he has to wait for hospice. I have no idea when hospice comes every day and they only stay an hour or so. My understanding is that they compliment my father’s care and there is no reduction in the service the home is giving. Now I’m a mediator between hospice and the nursing home.

I’m going to ask for help today. I want to see if the nursing home can recommend a service that can come in and just sit with my parents. If we’re not here they both become agitated and my mother starts bitching at everyone. She’s never had responsibility like this ever and she’s not handing it well. She doesn’t know how to ask nicely for assistance. She just starts bitching and complaining which puts people off. She calls us constantly usually during a huge meltdown and it’s wearing us all out. We want to be here to support her but we can’t possibly be here every day because of our families and jobs. She incapable of living on her own and making decisions and putting her in this position of caring for my father is too much for her to handle. This is way too much for us to handle by ourselves and Mom is falling apart at the seams.

She’s going through so much all at once. She has health problems, her husband of 56 years is dying and her house and possessions are being sold out from under her. She’s worried about the cost of this care because Medicare is no longer paying and she forgets almost everything these days. She’s very unorganized and struggles to care for herself. We can’t expect her to care for Dad during his last days with everything going on.

Taking care of your aging parents really sucks. There’s so much to do and so much emotion. It’s hard watching the people that raised you and taught you so much degrade so fast. Now we’re changing their diapers and caring for them like they cared for us. It’s so hard mentally and emotionally. Elder care is becoming such a huge issue for our society and not much is being done to support us. Big business is jumping in to build facilities but nobody is addressing our mental and emotional needs. Michael Moore, we need Sicko II!!

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Mom was ready to move to Cleveland to be near Mary but decided at the last minute that it’s best not to move Dad. Now they have friends visiting on a regular basis and they would be completely alone in Cleveland. Mary would be able to visit a few times a week but nobody else is there to visit. They would be even lonelier in Cleveland than they are now.

Mom and Dad are really upset and confused. They’ve been uprooted from their home literally overnight and they house is being sold. Dad keeps saying “just take me home” and it’s hard to explain that he doesn’t own his home anymore. The official closing is on November 19th and we’re busy clearing it out now.

Dad still has his ups and downs and he’s entering a period of rapid decline. The cancer and Parkinson’s are taking it’s toll on his mind and body. He has constant back pain, digestion problems and he can barely move his arms. His legs are so weak he can barely move them and he can’t move without assistance. He hates being lifted in and out of bed every day. He hates what’s happened to him and is getting frustrated. He never imagined this happening to him and neither did we.

Mom is confused and in and out of reality. She hates where she’s living and also wants to go home. She really believes she can live alone and take care of Dad and herself but she can’t even remember what day it is. She keeps misplacing things and spends most of the day shuffling things around her room. The newspaper is scattered everywhere and she has clothes on the floor, on the bed, on chairs and she can’t find anything. She was the neatest, most organized person until recently. Now she’s totally confused and lost. It’s really hard to see.

Medicare is ending for Dad on Friday so the big bills begin. We’re already paying over $4000 a month for Mom and Dad’s going to be another $8000. It’s a good thing they’ll planned ahead and invested well.

This is really taking a toll on everyone physically and emotionally. We’re exhausted and it’s taking a huge toll on my business and Connie’s business. We both work for ourselves and we’ve lost a lot of work time. Also we’re not able to take on new clients while we’re traveling so our business is declining rapidly. I need to focus on my business to get it back on track but it’s really hard to stay focused. I really hope this ends soon for everyone’s sake.

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There’s an opening in Cleveland at the facility near Mary so we’re debating whether it’s worth moving Mom and Dad. It would be nice to have them near Mary but it’s going to be a hard move for Dad. We found out that he can’t get on a commercial airline because he has to be able to transfer himself from the wheelchair into the airline seat. He also has to be able to stand up from the airline seat and get into the wheelchair by himself. Unfortunately he’s not strong enough to do that anymore. A month ago he barely could do it but not today. He tries like hell but the strength isn’t there. The cancer and the Parkinson’s have taken away his strength and muscle tone.

Both of my parents hate it where they are. It’s not about the facility or the people working there. They are fantastic and the facility is fine. They hate the fact that they can’t go home and live in their house. That’s just not possible since neither can care for themselves. If Mom was able to care for herself and help out with Dad then it would be possible. We could do 24 home care and it may work out but we would need an aide to watch my father and an aide to watch my mother. They need to use a lift to get Dad in and out of bed so it would be very hard to set up at home. Plus their house has been sold and it’s closing in a few weeks.

Mom needs to step up and start realizing that she needs to start planning for the inevitable. She needs to reach out and meet new people and not sit around every day on “death watch”. The assisted living facility is full of women who have lived through the death of their husband and they can help her if she would reach out. She says she hates the place because it’s full of bitchy old women. Unfortunately, Mom is one of the bitchiest women in there. She’s so angry and upset that she won’t reach out to make new friends. She’s meeting with a counselor twice a week and it’s helping her realize that she needs to change her thinking and start moving forward. This is so hard for all of us.

I have to say Medicare has been very good to us. After the initial confusion and dumping by the hospital and the first rehab center, Medicare is still paying the bills. My mother had a few hospital stays and a long stay in skilled nursing and it didn’t cost a penny. Medicare picked up the entire tab. My father is still being covered and I’m assuming we’re going to have to pay 20% of the costs once he passed the 20 day mark. We’re well past 20 days of care for him and he should be covered until 100 days. If he lasts that long then we’ll have to pay for his care.

We’re eight weeks into this and there’s no end in sight. Dad hates what’s happened to him but he said he’s not ready to die. He just wants to go home.

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I just spoke with Dad on the phone and he sounded so weak. It’s hard to talk to him on the phone because there’s nothing to talk about and he sounds terrible. He’s not aware of current events and it sounds like he’s struggling just to hold the phone up to his ear. I always ask him how he feels and he always says he feels great and he’s feeling better every day. He’s always seen the glass as half full and that will never change.

Mom said he’s very frustrated and lonely. She lives down the hall in assisted living so they don’t spend the night together. She’s also very lonely and feels trapped because she’s all alone at night and she can’t leave the facility on her own. She’s been fighting us about driving and she was ready to call a friend to pick her up so she could get the car at home. We called the assisted living facility and told them not to let her leave to get the car. They agreed that she shouldn’t drive because of her memory loss but she still wants to drive. She’s so mad at Mary, Connie and I for not letting her drive. Last night she asked the doctor if she could drive and he told her she can’t drive any more. She seems to have accepted it for now and she hopes she can get well enough to drive some day.

We feel so horrible because their lives have been turned upside down in an instant. We’ve sold the house and we’re selling most of their possessions. She has no room for her furniture and most of her possessions in a studio apartment at the assisted living facility. We keep telling her “no” to everything and it really hurts.

I can’t find an assisted living/skilled nursing home near my home in California. There are some about 30 miles away but we want them to be closer to us. 30 miles with our traffic can be an hour’s drive. We have a great place in Cleveland for Mom and Dad is on the waiting list so if we do move him it will be to Cleveland. After talking to him today I’m not sure if he’s going to make it. This is by far the hardest time our family has ever experienced and hopefully Dad will pass soon. He told my mother last night that he’s disappointed that his life isn’t going as he planned.

Dad’s cancer seems to be spreading and he’s having digestive problems. He’s shown very few signs of the cancer and the Parkinson’s has been dominating him. Now the cancer seems to be rearing it’s ugly head so it’s going to get a lot worse soon. He’s already so weak but he’s so brave and he’s fighting to the bitter end. I’m going to model my father and never give up and keep thinking positive until the bitter end.

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Will they move to Cleveland or San Francisco? Mary found a fantastic assisted living facility in Cleveland, right near her home. It has skilled nursing for Dad and assisted living for Mom and it’s very reasonable. Dad still has about 60 days left of Medicare coverage and Mom will only have to pay around $2200 a month for her room. The rooms are large and spacious and brand new. Mary said the place is very luxurious and comfortable. We’re on the waiting list for Dad and there’s room for Mom now.

I’m still looking in California for a place also. My parents really want to be in California but there aren’t many combined skilled nursing/assisted living places close to me. Mom would have to live in one place and Dad in another which wouldn’t work for us or them. Also the cost of assisted living in our area is at least double what it would cost in Cleveland. Money isn’t an issue for my parents but they still balk at spending money unnecessarily. We keep telling them that money isn’t an issue and you’ve been saving all of your life for this time of your life. We want them to be comfortable and we want them to be as happy as possible.

Dad is still up and down each day. Most of the time he’s been good recently as long as he gets enough sleep. We don’t know how much sleep he gets at night but he seems better if he gets a nap or two during the day. I know many nights he’s reliving his past in the restaurant cooking and getting ready in the kitchen. His hands are in constant motion cooking and cleaning as he imagines being back in the kitchen. His eyes are open but he’s in a different world when this happens and it doesn’t look like he’s getting any rest. I wish we knew how much longer he’s going to fight. He told me the other day the he’s getting better and better every day!

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I’ve been back in California for a few days getting back into my routine. Actually my old routine is long gone. I spend most of the day on the phone taking care of tasks to help my parents sell their house, plan for their move to Cleveland, handling their bills and financial issues, talking with the health care workers, and comforting my parents. It’s been a long time since I felt like I was in a rut!

Now we’re in the process of clearing my parents house and preparing them for their move to Cleveland. Dad isn’t going anywhere for a while so it’s best to get him closer to one of us. We can’t continue to commute coast to coast to take care of them. This way Mary can watch them and we can visit occasionally.

Mom moved into assisted living yesterday since her Medicare time ran out. She’s walking better than she has in 10 years. It so nice to see her taking on a challenge and succeeding. She has very little self esteem and very little motivation. Dad did everything for her for years and her father controlled her mind every day that he was alive. He finally passed away a year ago and finally she can be herself without worrying about scrutiny from her father. He mentally destroyed her and her mini strokes have taken away most of her short term memory.

The house has been sold and we have to clear it out by November 12th. There’s so much to get rid of and it’s sad to give away almost everything my parents own. It’s like they’ve both died and we’re clearing the house. Mom won’t need much in assisted living and Dad needs nothing but a few pairs of sweat pants and pajamas. It’s really hard going through their possessions and clearing the clutter. Most of their possessions are so old that we don’t want them but they’re still good for someone else. There are a lot of people out there praying on people like my parents, giving them next to nothing for perfectly fine possessions. One guy want us to pay him $1000 to haul everything away and we knew he was going to resell most of it. We opted to have a friend donate everything he could and junk the rest. 

Still lots to do and no end in sight. I’m taking everything one day at a time and doing the best I can. I’ve learned a ton about our health care system, cancer, Parkinsons, Medicare, assisted living, skilled nursing, caring for seniors, wills and living trusts, and wealth management in just two months. And there’s so much more to learn, like learning how to stop and grieve and appreciate everything my parents have done for me.

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