Day 20 – Mom is still in the hospital with unstable blood pressure. They’re running tests to see if they can figure out why its so inconsistent. I’m sure most of it is related to stress. They changed her blood pressure medication yesterday and took her off a few medications that may have caused the ulcer. She wants out of the hospital so bad so she can be with Dad but she’s not well enough right now. Once she gets out of the hospital she’ll be moving into the assisted living facility with Dad so they can be together.

Dad had another rough day yesterday. He’s getting weaker every day and he’s bored. He sits in his wheel chair all day watching television or hanging out in the lounge so he has company. He told me he’s lonely and bored and he keeps asking when Mom will be there. He also thinks he’s leaving for California soon and keeps asking me if we found his suitcases. We keep telling him he’s not going to California but he forgets. He’s been significantly weaker the past couple of days and it’s clear that he probably won’t make it to the end of the month.

I’m still hoping I can go home on Wednesday to regroup but I have no idea when they’ll release Mom from the hospital. I can’t leave until I get her moved into the assisted living facility since she has no way to get there from the hospital. She’s not able to drive by herself because she forgets where she’s going. I could have her cousin who lives near here pick her up but I couldn’t possibly leave town having her in the hospital.

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Day 19 – Another setback yesterday. Mom was going to be released from the hospital and she fainted when she got up to go to the bathroom. I found her sprawled out on her hospital bed trying to reach the call button. I ran into the hall and got the nurse to help out. A few doctors ran into her room to help and her blood pressure had skyrocketed to 220 over 140. They worked on her for a while and got her blood pressure down a bit but not back to normal. They transferred her to a different unit so they could monitor her heart. She spent the night there and we’re not sure if she’s getting out today.

The doctor said this recent episode probably wasn’t related to her ulcer and they’re going to have to do more tests to determine why she’s lightheaded and her blood pressure is fluctuating wildly.

Yesterday was a bad day for Dad. He was very lonely because we were at the hospital with Mom most of the day. He was very weak and confused most of the day. We visited him twice and the nurses said it wasn’t a good day for him. He’s worried about Mom and he doesn’t know why he’s staying at this new facility. He still thinks he’s going to California soon and keeps asking for Mom. He wants to go visit her in the hospital and gets frustrated when we tell him that we can’t take him. He told me to tie a rope on the back of the car and pull him to the hospital. Thank god he still has his sense of humor!!

Mary and I hit another wall yesterday. Both of us have been here for almost 3 weeks now and we miss our families. She drove back to Cleveland for a few days last week to catch up with her bills and household chores but raced back to Philadelphia when Mom got sick. I was so disappointed having to call the airline last night to change my flight again. I’m so ready to go home and see my family and my house. 

Ellen and Alicia came down from New York yesterday to see my parents which was great. They were there for Ellen’s mother’s funeral and they’re heading home today. It was the first time I’d seen them in 3 weeks and I was so excited to see them. It’s so hard being away from my family during these difficult times and it really helped to have them here even if it was only for a few hours. Thank god Connie and Mary have been here with me on and off because I couldn’t imagine doing this alone.

We’ve done all we can do for our parents considering the situation they put us into. We’ve been begging them to move closer to us for years and Dad wouldn’t do it. Now he put us in a horrible situation of having to move them into assisted living and leaving him alone with Mom to die. We can’t stay here forever because we have our lives to get back to. He may last another week or he may last another few months. He’s a fighter and will fight to the bitter end.

I’m sure Mom’s recent problems are related to stress and anxiety. She’s losing her husband of 56 years who did everything for her. She can’t function on her own and she’s moving out of her house into assisted living to be with him. Once Dad dies, she’ll be moving to California into assisted living. It’s really weird staying in my parents house knowing that they will never live here again. I know this wouldn’t be easier if this was happening in California but being able to live in my own home with my family during this period would help a lot.

We’re off for our daily round of hospital hopping now to visit Mom and Dad. Back and forth between both places to keep them company and keep them comfortable. I don’t know what’s going to happen when we finally get them into the same facility and we leave town. I’m sure it’s going to be hard for them and even harder for us. I feel terrible about leaving them alone in a strange place but I can’t stay here forever. I wish they didn’t put me in this position but they did. Now all I can do is make sure they are safe and cared for. The facility is great and I know they will be safe and carefully cared for. Much better than the previous facility where they focused on making as much from Medicare as possible at the expense of the patients health and safety. I hope they make a Sicko II because I have enough material for the entire movie. That’s all I can do and I have to let go of my guilt and get home as soon as possible.

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Day 18 – Yesterday was another emotional roller coaster. Dad is making significant progress in the new assisted living center. He’s sleeping at night so he much stronger during the day. They don’t let him lie in bed all day and they make him sit in a chair and be as active as possible. His hallucinations are gone and he makes perfect sense when we talk with him. We’re thinking he was weak from not sleeping and the anemia from the bleeding ulcer. We want them to do a complete physical and bloodwork to see where he stands because he’s looking and acting stronger every day.

On the other hand, Mom is back in the hospital with a bleeding ulcer. We don’t know when she’ll get out and we want her to stay in until she’s better. She was supposed to move into assisted living yesterday but obviously didn’t make it. Mary and I are supposed to go home tomorrow but it’s not looking like we’ll make it. Someone has to get Mom from the hospital to the assisted living center and close up the house.

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Day 17 and we’re still dealing with administrative issues. We haven’t had time to grieve and prepare for Dad’s death. We’ve been so busy running around getting everything in order and making sure everything is in order for Mom. We’re heading home in a few days so we have to spend some time with Dad so we can say good bye.

We’ve been spending hours each day with Dad but most of the time he’s sleeping or we’re asking him questions about the house, his investments, his will, etc. We haven’t had many heart to heart conversations with him. I had a few great conversations with him when I first arrived because I didn’t know how much time we had. They were great conversations but I’m not ready for him to go. I’m not sure what I need to say or hear to have closure but I want to spend the next 48 hours trying to reach closure.

Dad moved into a private room yesterday and seemed to settle down. Today Mom moves into the assisted living section. She’s excited and scared. It’s a big step moving into a facility like this after being independent for 78 years. It’s so hard to watch but we know she’ll be safe, get the care she needs and be near Dad.

After we get Mom settled we’re going to spend as little time as possible there today. We want them to get settled without us around so they learn the system. We’ll be around if they need us but we need to get out of their hair. We can spent a lot of time there tomorrow since we’re leaving for home on Sunday.

We also want to tell Dad that he’s not moving to California because he’s not going to live very long. He knows he has cancer but he still thinks he’ll be able to move to California. He’s been telling some people that he’s had a great life and he’s ready to go but I don’t think he knows that he’s going to die soon. He’s not going to give up easily and I know he’s going to fight until his last breath.

I’m going home on Sunday and I’ll probably return in a couple of weeks to check on the house and see how they’re adjusting. I know Dad’s time is limited so I want to be around for him as much as possible.

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We all feel horrible this morning. We’re burnt and exhausted. I want this to end right now but I know I have a long way to go. Dad is unsettled, Mom is melting down and getting very angry, Mary has had it and I really need to step away from this so I can collect my composure and re-energize. We’ve made a lot of progress but we have a long way to go.

Mom is starting to realize that Dad is not going to get better and we can’t bring him home. She still wants things to return to normal but they never will. He no longer lives at home and he never will again. She’s moving into the assisted living facility tomorrow and its sinking in that she’ll never live in her home again. Life will never be the same for her and Dad but she still believes that he’ll get better and they can return home to their normal life.

We’re all sad, angry, tired, frustrated and frustrated. How long does Dad have to live? The doctor won’t even give us a ballpark estimate. Is he going to last another week? Another month? Another 6 months? We have no idea and his will to live and function independently is incredible. He won’t stop trying to get up and move around. He never could sit still for long and that’s not going to change until he takes his last breath. If we had some idea how long it would be we could plan better but we have to make due with what we have to work with.

We’re all expressing anger and frustration with my father because of his stubbornness. We’ve been trying to convince him to move to California for years so they could be near their children and grandchildren. My mother was ready to move 10 years ago but Dad always resisted. It’s too expensive, too far, he likes his job too much, he doesn’t want to leave his friends, and a million other excuses. We’ve been trying harder and harder to get them to move as we noticed they were slowing down and having trouble functioning without our help. If they needed out help when they visited us, how were they functioning alone at home? 

Well now that we’re staying in their house we know that they haven’t been functioning for a long time. The house is dirty, there are lots of things that need fixing and the house is run down. My parents were always proud of their house and maintained it immaculately. I never thought I would see the day when they had dirty floors and a mess in every room. They don’t pick up small pieces of paper on the floor either because they can’t bend down or they can’t see it. It’s so sad to see them failing and they don’t even see it.

We’re moving Dad into a private room today so he can have privacy. We can bring in some of his things so its more like home. He really wants to be at home so we’ll bring home to him. We need to make him comfortable and get him to let go and relax. Maybe once we head home next week he’ll settle into the new facility with Mom.

We just found out that we can’t start hospice and still have Medicare pay the bill. It’s an either/or thing which makes no sense. Medicare pays everything for the first 20 days, and a large percentage from day 21 to day 100. We really need the support hospice can provide right now but it would be very expensive if he lives another 6 months and we don’t get Medicare support. What a screwed up system!

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It’s moving day for Dad. He’s supposed to be moved from the horrible facility to a nice Assisted Care/Skilled Nursing Facility at 10 AM. Mary and I get there early to make sure everything is in order for the move. The transportation arrives at around 10:30 and we move Dad to the new facility.

We arrive at the new facility to check Dad in. The social worker from the old facility called me three times yesterday to let me know everything is in order for the move. The administrator at the new facility said she never received the paperwork from the social worker. She wasn’t ready to admit him and she was furious because she called the social worker three times telling her that she hadn’t received the paperwork. Luckily they had room for Dad at the new facility. If he didn’t have a room there we would have no place to take him except home. Dad needs two people to move him now so there’s no way we could manage him at home.

Tina, the administrator, is amazing and the first helpful person we’ve encountered in this process. Everyone else is obviously looking for Medicare money and dumping patients as fast as the money runs out. Tina has saved our life!

Tina just called us at home asking about the hospice worker that is coming in tomorrow. She said that hospice service isn’t registered at their facility so we can’t use her or we will have to pay all of my father’s expenses by ourselves. If we use a hospice service that’s authorized by the facility then Medicare pays the entire bill for 20 days.

The system is a series of alliances between doctors, facilities and other providers. A clear case of one hand washing the other and all hands grabbing every available Medicare dollar. It’s not about the patient. It’s about making as much money as possible.

Dad just called from the facility begging us to bring him home. He said it’s a jail and they’re abusing him. He’s so upset which upsets my mother. She’s not feeling well and she’s yelling at everyone in site. She said she hates the new facility even though she loved it the first time she toured it. Now she said it’s shoddy and she hates Dad’s nurse. Right now she hates everyone and everything and needs to start facing the fact that Dad will never be able to come home again and he’s going to die soon. She’s in denial and still wishes he’ll get better.

It turns out that Dad unhooked his bed alarm and started walking down the hall with a wheelchair. He hasn’t walked in weeks and now he’s trying to escape the facility. The rehab is working but that’s not what he needs right now. Mary and I are facing Mom and Dad both melting down at the same time and we’re already on edge. It keeps getting harder and harder and we need a break!

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My priority today is to get Dad out of this rehab center and into a skilled nursing facility. He deserves better than the mistreatment and neglect that he’s receiving. No doctors are monitoring him and the aides are ignoring him now. There’s one nurse that works days that is fantastic. Otherwise everyone else ignores him and does little to comfort and care for him. We’re living the nursing home nightmare.

I called about a dozen facilities and found room for Dad at one of the places we liked. It wasn’t our first choice but it was a close second. This facility is actually better than our first choice because Mom can be in the same building as him. The other facility was a multi-building layout and she would have to get on a shuttle to see him. I want to move him today and everyone agrees it can be done. Then the social worker called back and said it would take 24 hours to process the paperwork. I knew this was bullshit because the Director of Admissions said they could pick him up in a few hours. It turns out that the rehab facility squeezed in another occupational therapy session so they could collect more money from Medicare. If he’s discharged the same day, they don’t get the Medicare payment.

Dad said he was ready to go because they weren’t helping him. They’re tired of helping him and they’re ignoring his calls for help when he has to go to the bathroom or wants to get back into bed to sleep. It takes at least 45 minutes to get them to respond and they get mad when we track them down and ask for help. This place really sucks!

When we came back after dinner, Dad was sitting at the nurses station again and he was pissed. He said they wouldn’t let him into his room and made him stay at the nurses desk for over 2 hours because he was misbehaving. He thought he was being punished for breaking some rule and was really disoriented. It turns out that one of the aides was tired of helping him so she took him out of his room and dumped him in the hallway. We felt horrible for Dad and really wanted to just take him home. If he could still walk we would bring him home in a heartbeat.

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Dad was great again today. We spent a few hours with him until Mom got very sick. We had to rush her home and Dad was very concerned about her. He was very coherent today and his neighbors stopped by which made his day. Connie said he was a little confused after dinner when he got tired which seems to be the norm. I’ve been watching him sleep and he’s having a lot of trouble breathing. He stops breathing for long periods of time then wakes up gasping for air. I don’t know if this is related to the cancer or if he has a sleeping disorder like sleep apnea. I’m going to check with his doctor to see if he can tell me more.

Mom was very sick and nauseous. She didn’t eat dinner and went right to bed. I’m very concerned about her and she really wants to go back and see Dad even though she can’t stand up with getting very dizzy.

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Dad was fantastic all day today. We watched a movie with him and he followed the movie without falling asleep. He was aware what was happening and commented frequently. We had normal conversation with him almost all day. When he gets really tired he starts making up stories and seeing things that aren’t happening. Today we enjoyed a long day with him and it was the best day in a long time. We really needed something to lift our spirits.

We noticed they never check his vital signs or do any blood work at the rehab center. I asked the nurse why they don’t check him and she said they only check if there are obvious problems. Since he is stage 4 they are pretty much ignoring him. They give him his meds every day and that’s it. He may still be anemic or his blood pressure may be high or low but we don’ t know. We need to move him to another facility as soon as possible so his own doctor can care for him. Right now he’ s under the care of the facilities doctors who visit once a week. It’s a remote control operation and it’s ridiculous seeing the doctors billing Medicare when they’re never on site.

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Dad was much better today. He was still talking about getting on the plane soon but for the most part he was pretty coherent. It was so nice to actually talk to my father again because I didn’t think he would ever reappear. Every day I don’t know what to expect when I arrive at the rehab center. I go in expecting the worst and love it when Dad is happy and coherent. He seems to be getting stronger from the physical therapy and he enjoys the activity. The downside is that he’s getting stronger and wants to get out of bed and walk again which he still can’t do. His doctor said we would never get strong enough to walk again. It’s so hard to watch him sitting there knowing that he’ll never be able to go home again because he won’t be strong enough.

We started contacting facilities to see if we can get Dad into a Skilled Nursing Facility and Mom into Assisted Living. We thought he was going to get into the Quadrangle facility by now but there are no openings. When he took a turn for the worse on Tuesday and Wednesday we thought he wouldn’t make it out of this facility so we stopped looking. Now he’s bouncing back and he may live for a while so we need to get Mom and Dad settled so we can get back to our families. It’s a long holiday weekend so we have to wait until Tuesday to call the facilities.

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