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 19^th 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 19^th. 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 19^th 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 12^th. 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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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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