Memory Books Contribute to Personalized Care in Hospice

When dad was in the hospital I felt he was not seen as a total person – just a patient. I wanted to bring in pictures of him but there wasn’t any place to put them. In the hospice there was a nice piece of furniture that held not only his clothing, a small refrigerator and a television, but also had many shelves for personal items.

I brought in many of dad’s favorite pictures. I had pictures of mom and dad together, pictures of dad with his brothers in their military uniforms from World War II, etc. In addition, I brought in many of the memory books I had made for mom and dad over the years.

I set the memory books on the shelves, open to pictures of dad also. I also had calendars with pictures of mom and dad that were set up on those shelves. I had them there to make the room feel like home to dad and to us as well.

Soon I realized that all of dad’s caregivers – his doctor, his nurses, his nurses’ aides, etc. had sat down in dad’s room and read his books. Even the social worker knew about dad’s life from reading his memory books.

The doctor told me he thought it was wonderful how they were all able to get to know dad better through the pictures and especially the memory books. The social worker realized that dad was proud to be a US Marine (“once a Marine, always a Marine”). When the Vietnam Veteran called to say he was coming to bring dad a quilt, she told him dad was a Marine, and the veteran volunteer brought dad a quilt specifically made for a Marine.

The wonderful thing about hospice is that all of the caregivers were dedicated to just a few patients. The same caregivers saw dad each day and they got to know him and our family. I believe these memory books were a significant help in allowing dad’s caregivers to get to know him as a person. Even though dad was unable to speak by the time he arrived in hospice, the caregivers all talked to him and talked about the life he had lived and his family as they saw it in the memory books.

So, even though I have written about the importance of memory books before, I want to reiterate how they contributed to dad’s personalized care during his last illness. Now those same books are ours to review and remember the ones who was so important in our lives.

Posted in Caregiving, death and dying, Elder Care, Eldercare, Family, Hospice, Memory Books | Tagged , , , , | 4 Comments

After Dad’s Passing: Part 2

I did not mention a funeral service in my last post about the things I had to do after dad passed. In fact, I had dad cremated and picked up the “cremains” the same day I picked up the death certificates. Again this was much faster and easier than with mom’s passing. Within 3 days I had his death certificates and cremains at my home.

Because most of dad’s friends and all his contemporary cousins, siblings, etc. had pre-deceased him, I wasn’t sure if or where to have a service. I had asked a priest to come to the hospital to see dad within days after his heart attack. The priest gave dad the “last rites” which is now just called the anointing I guess. I am not a Catholic but knew this was important to dad.

I didn’t see any point in having a funeral service locally as dad had spent most of his life in other communities. He only knew our family and the people at his assisted living facility in our town. Everyone else was hundreds or thousands of miles away.

Dad will be interred in the national cemetery with mom. Since this is hundreds of miles from my home I planned to have a memorial service instead of a funeral service. I haven’t yet determined if the memorial service will be in my community so my children can all attend or whether to try to have something near dad’s house hundreds of miles away. We still have many relatives in that area and some of dad’s younger work friends have asked to be notified if there is a service. But travel and arrangements would be much more difficult for me there. Therefore, dad’s memorial service is one more thing I have deferred until later in the spring when I have more energy to deal with it.

You may also notice that I haven’t mentioned my siblings. Neither my sister nor my brother came to see dad before he passed. I am doing all of the paperwork, etc. as well. I get frustrated with the lack of support from them, but this is not new so I am not surprised.

While dad was in the hospital and then hospice, my son’s wife’s grandfather was also very ill. He was expected to live at least 3 more months but instead he passed away just 2 days before dad. So while my son was sitting vigil with me at the hospice, his wife was dealing with her own grief and loss of her grandfather.

Her grandfather’s wake was the day after dad died and his interment was the next day. The only advantage of all this grief at once was that they were able to take 3 days bereavement for each death. My son was late for his wife’s grandfather’s wake because he had been with me at the lawyer’s office. He went with his wife and her family to the funeral service later that evening and the interment the next morning.

As I mentioned last time, I was able to leave my northern home less than a week after dad passed.  I was anxious to flee the cold and snowy weather.  However there were tasks I had to complete before I left.

One of the things I wanted to complete before I left home was dad’s obituary.  I emailed my children for digital pictures as I was too unfocused to find what I wanted. My daughters came through as usual and I had a nice one chosen to send to the newspaper. I decided not to place an obituary locally since dad knew so few people in our community. Instead I had it placed in the newspaper in the community where he lived most of his life. I sent a copy of it also to his assisted living facility and to the mobile home community where he and mom used to spend their winters.

Many relatives and some of dad’s friends saw the obituary in the newspaper and contacted us to ask to be notified if there is a service.

I also still have not finished with dad’s belongings from his apartment at his assisted living facility. When we cleaned out his apartment, I sent all of his furniture to my sister on a moving van. My son and daughter helped me bring home everything else – mostly clothing and personal items. I have them all sitting and waiting in my home. When I get home in the spring I will sort items for donation, etc. I hope to give some of the better items to the organizations that help the homeless and other such charities. Dad had so many warm shirts I am sure they will appreciate them.

Also now I have heard from the legal team that I am supposed to be making an “inventory” of all dad’s belongings at the time of his death. Thank goodness my daughter obtained receipts for the bags of clothing she dropped off at the charity store. I will record the rest of his things (or photograph them for later recording) when I get home.

Although I am physically many miles from my home, my mind still goes back there most days as I contemplate other unfinished business.  I would like to hit the ground running when I return from this respite from the winter weather.

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After Dad’s Passing

Dad passed away in his hospice on a Sunday evening. My children and I went back one last time to see dad and pack up his belongings about 8:30 that evening. After we left, hospice personnel called the undertaker who came and picked up the body.

Less than an hour after I got home that Sunday evening, the telephone rang. It was the undertaker. He said he had just picked up dad’s body and did I want to come in right then to sign the paperwork? I had already met with him in the past and gave him information about dad, his parents, his military experience, etc. I was tired and sad. I said no, I did not want to go in so late on a Sunday evening.

I agreed to meet with him at 9 AM on Monday morning. I called my son and asked him to go with me so that I wouldn’t get emotional and forget the answers to the many questions that might come up. My son and daughter (and dad) had been with me when I made arrangements with mom’s undertaker, over 4 years ago, so he knew what to expect.

It was cold and icy and I also needed my son just to help me walk through the parking lot! The undertaker had all the paperwork carefully prepared and we got right down to business. He must have had 20 forms for me to sign. Most were government forms following federal or state laws that stated that I was not told I was required to purchase an urn, a lined coffin, embalmment, etc. I couldn’t believe how many things they had to show I was not required to purchase.

Now I remember years ago when these laws were passed because funeral homes used to insist that things like embalmment or lined coffins were required by law (and sometimes they were). Then came the era when people wanted to make their own coffins or purchase them cheaper elsewhere and funeral homes balked at that. Now it is clear that the buyer has more rights and thus these forms are used to show we weren’t intimidated into buying more than we wanted.

The next questions had to do with the death certificates and how many did I want. He suggested at least 4 I think, though I got a few more. When mom passed away it seemed like everyone wanted proof of death including banks and insurance companies.

After we were done, my son dropped me off at home but agreed to pick me up after lunch as we were scheduled to meet with the lawyer. I knew the legal process was going to be long and complicated because dad still owned his house hundreds of miles from my community. This meant the estate would have to go through probate.

In addition, I still planned to return to the south and flee the terrible northern weather. I was so overwhelmed with the cold and icy roads and just total sadness. I wanted to do as much as I could quickly and then leave the rest of the process until I returned home in better weather.

As we talked with the lawyer and his legal assistants, I could see this was going to be a lengthy and confusing process. I was very thankful that my son was with me, though he was working with a deadline – as he had to be somewhere else. It took us about 2 ½ hours for the legal team to explain all the steps that had to be taken in order to begin the probate process.

While the will said that I was to be appointed executor, that wasn’t an automatic process. The lawyer had to prepare papers and take them to the court to appoint me as executor. And before that could happen, he had to send a copy of the will to everyone named in the will. And he had to send papers for them to sign saying they do not object to me being named executor. I don’t know what will happen if they don’t sign, but I can’t imagine they want the job!

After those papers come back, the lawyer will file the petition to the court to name me executor. In the meantime, he prepared the petition and had me sign it anyway as if the papers were returned. That way I would be able to leave and return to my winter vacation without waiting for this process to play out.

If anything happens while I am gone, my son will be able to meet with the lawyer in my place to pick up or deliver necessary papers, etc.

Another thing I am supposed to do is to open an estate bank account by closing my father’s other accounts unless they are joint accounts or payable on death. I will also add any money that comes back as refunds for prepaid items like his telephone and cable bills. However, I can’t open the estate bank account until after I am named the executor by the court.

In the meantime, I can’t use the estate bank account to pay any of dad’s bills – like his medical bills. I am uncomfortable waiting to pay all bills, but so far that is what I am doing. The lawyer said I could pay from my own funds and keep good records and have the estate repay me if I need to, but it is better to wait for the estate account to be opened.

One of the things I was worried about was the death certificates. When mom died, a series of errors delayed the death certificates for over a month. The undertaker had put the wrong date of death on the certificate and the doctor did not catch the error. It was in the weeks between Thanksgiving and Christmas and it seemed impossible to get anyone to move with reasonable speed. It took about 3 to 4 weeks to get the certificates with the error on them and another 3 weeks to get the amended certificates. In the meantime I couldn’t collect insurance or do much else.

I was pleasantly surprised when the undertaker called me two days after we had met. The death certificates had already arrived. I drove over and picked up all the copies. What a relief! One more anticipated problem was avoided!

I called the law office to see if the petitions I was to sign were ready yet. I reminded them that I wanted to leave town as soon as possible to get to a warmer climate. They worked hard to accommodate me and by late Thursday they had the petitions ready to sign.

I had purchased airplane tickets for Friday with little faith that I would actually get out that quickly. However, it seems that just by setting a deadline, I made things move along faster and it all worked out. My son drove me to the airport on Friday.

Less than a week after dad passed away I had gotten away from the winter weather and resumed my aborted vacation in the south! I could hardly believe it, even as I disembarked from the airplane. My next door neighbor told me I got out just in time as there was over a foot of snow the next day and the airport had been totally closed down!

I still have a lot to do in terms of settling dad’s estate. However, for the time being I am taking a much needed break. I have friends here in this southern community and they are all very supportive of my loss. In addition, many friends from home have also sent me notes and cards.

I know I will have a lot of work waiting for me when I return home, but in the meantime I am avoiding this winter of unending snow and extreme cold.

Posted in Caregiving, death and dying, Elder Care, Eldercare | Tagged , , , , , , | 21 Comments

Dad’s Last Days in Hospice

Last time I wrote about dad’s hospice. As I mentioned, he slept through most of his first day there. The next few days he was awake and aware of his surroundings more, though he didn’t speak at all. He did indicate with his hands and facial gestures when he was thirsty.

Each day the palliative care physician came in the room to talk to me. He told me what was happening according to his morning assessment. By the third day dad seemed to be doing so much better than the first. I asked the physician if he still expected dad to have about 3 months left. He said no. At this point, dad was not eating anything and not drinking anything except tiny amounts of water from a syringe or sponge.

“I think you can count the remaining time left in days, not weeks.” He said. I was surprised. He looked so good. His color was good and he didn’t seem to be in any pain, though he was getting medication on a regular schedule to prevent pain. Doctor A said that dad would probably experience a big change the following weekend – 5 or 6 days away. He said that without food and water, dad would be slowly declining unless he had another heart attack.

It was just hard to imagine that dad would be gone. I knew he had two heart attacks and that his heart was badly damaged. I knew his kidneys didn’t appear to be functioning right, as indicated by the dark color of his urine. Still, thankfully, dad did not appear to be in distress.

As the week progressed, I could see that dad was losing his ability to swallow. In addition, his eyes didn’t seem to follow us anymore. He kept his eyes half open all the time, but I wasn’t sure if he could see anything at all those last 3 or 4 days.

I spent every afternoon with dad. I could see he interacted well with all the staff. The low patient-staff ratio meant that all the nurses and aides knew dad and they all seemed to really care about him. My son or daughter spent time with me in dad’s room at the end of every day.

In addition, a volunteer came in every day and spent some time with each patient and his family in the patient’s room. She just talked about anything and was there to give suggestions and help people feel they were not alone.  This woman came in every day — 7 days a week — for several hours to visit with the hospice patients.

One day a different volunteer came to visit dad. He was a Vietnam Veteran and he brought dad a handmade quilt with US Marines fabric, a certificate of appreciation for dad’s service as a Marine, and an American Flag pin. By that time, dad was not very aware of his surroundings. I felt sad that dad was unable to see since it was beautiful quilt and dad was so proud of his Marine service. The nurses put it on dad’s bed each day after that. This veteran didn’t just volunteer at hospice. Instead, he visited veterans whether they were in the VA medical center, a local hospital or nursing home. In addition, he volunteered to pick me up the next day to visit dad as I didn’t have a ride yet. The bad weather kept me looking for rides each day.

The nurses had suggested that I talk to dad even when he was non-responsive. I had heard that before and did it with mom. I tried to tell dad that I would be all right when he passed away. I would be sad and I would miss him, but I would be all right. However, every time I tried to say that, I started to cry, so I wasn’t too sure I was being very effective! I am sitting here with tears running down my face right now as I write this.

As the doctor had predicted, dad’s condition changed markedly from Friday to Saturday. By Saturday he was completely non-responsive. He didn’t move his head to my voice or open his eyes. The nurses continued to try to put moisture cream on his lips, to readjust his position every 2 hours and to give him pain medication.

He appeared to be in distress more often now also. The doctor changed his orders to increase the amount of pain medication given regularly as well as to add the other medication for anxiety more frequently. I don’t think the medication alone was enough to completely knock dad out, but combined with his declining condition; he was asleep most of the time.

Over the weekend, my son, daughter and I continued our vigil at dad’s bedside. We left only to get something to eat. The doctor thought dad would pass on Saturday but still he held on. We returned Sunday and again spent the entire day at dad’s bedside. I tried again to tell dad I would be OK when he passed away, and was more successful at talking without crying. Dad didn’t give any indication that he heard me.

He seemed to be holding on by sheer willpower. He had not eaten nor had anything to drink for over a week and was totally unresponsive. But still he hung on. His breathing changed a few times over the weekend. The first time I called the nurse and she said it could be any time but there was no way to tell for sure.

Late Sunday afternoon when the volunteer was there, she suggested that dad might be holding on just because we were there. We might have to leave for awhile before he would pass. A few hours later, one of the nurses said the same thing. We left around 6 but I asked that the hospice call me if dad passed or if anything indicated it was imminent.

My son drove me home and I had some dinner.   Just after 8 PM, I got the call from hospice. Dad had just passed. I called my son and daughter and asked if they wanted to go in with me. Both did. We went to see dad one last time. The staff had begun to pack up some of dad’s belongings but had not changed anything for dad in his bed. We said goodbye and talked quietly among ourselves.  I packed up the quilt and all of the snacks I had brought in during the week.

We were glad dad was finally at peace, but disappointed to have been absent when he passed. I can only accept that if he had the ability to choose the time, then that was how he wanted it. He knew we were with him all that time and I think that gave him comfort.

I am thankful for all the help and care that we got from such a wonderful hospice. It is difficult to lose a parent. But compared to mom’s last hospitalization, this was far less stressful for both the patient and the family.

Posted in Caregiving, death and dying, Elder Care, Eldercare, Family, Hospice | Tagged , , , , , | 15 Comments

Dad at the Inpatient Hospice Facility

Last week I wrote about dad’s experience with hospice in the hospital. Just over a week after his heart attack in the emergency room, we were fortunate in being able to get dad an inpatient hospice bed for dad as I wrote about in my last post.

During dad’s last Friday in the hospital he was still able to talk and ask for a drink of water or to use the commode. He asked to be repositioned for comfort, and drank just a little cola with his lunch. I was told the ambulance would come at 5 PM to pick dad up and take him to his hospice which was nearby. I rode in the ambulance also, but in the front with the driver.

I went to the hospital cafeteria around 4:30 to grab an early dinner since I thought I might miss out on a chance to eat while the move was taking place. Dad’s dinner tray arrived just before 5 but as usual he wasn’t hungry. The ambulance was delayed for almost 2 hours due to heavy demand at that time of day. In fact, we didn’t get dad into his room at the Hospice facility until 7 PM.

Immediately after we arrived, the staff made sure dad was comfortable in his bed. I put his clothing in the closet and prepared to go home. It had been a long day and immediately I could see dad would get the personal attention he needed. I didn’t have to worry about being there or having someone else there to advocate for him.

I want to tell you some of the wonderful features of this hospice. First, and foremost, the people were all angels. They were always friendly and smiling and ready to do anything to help us. If we pressed the call button, they responded within just a few minutes and a nurse or aide would come to dad’s room to make him comfortable or to answer our questions.

The hospice building was built within the past few years and was designed specifically for that purpose. There were 11 private patient beds – 5 in one “wing” and 6 in the other. There was also a huge “great room” which had a kitchen and living room. There was a pot of hot soup available for families and patients every day for lunch and supper. The type of soup changed for each meal except on weekends when they had the same type for lunch and dinner. There was also always a pot of coffee ready for families. The kitchen cabinets also contained many condiments and extras such as jam, sugar, crackers, tea bags, etc. I made myself tea each day since I am not a coffee drinker.

Some of the patients’ families sat around the dining table in the great room to eat or talk. The kitchen was well equipped with all the appliances and pots and pans anyone could want to cook a family meal (but I did not cook). I usually prepared myself a cup of soup or tea and took it to dad’s room since I wanted to spend as much time as possible with him.

The other end of the great room was a living room with a large screen television, sofas and chairs and a huge aquarium. Along one wall was a gas fireplace with a stone ledge where one could sit. There were cabinets containing puzzles and toys for families to spend the day there or to take to the patient’s room.

In addition, there was a small “quiet room” in each wing and a laundry room with a washing machine and a dryer and vending machines for snacks plus an ice/water machine. Everything was convenient and easy to use.

Each patient’s room had a large screen television and CD/DVD player. There was also a loveseat that turned into a bed so family members could spend the night if they wished. A shower was available to family members who slept there also.

Now, I will tell you about the staff. There was a full time doctor on staff Monday through Friday. Two individuals shared this position. Dr. A would be there for 1 ½ weeks and then Dr. B would be there. On their alternate weeks, the doctors worked in the palliative care department at the hospital. On weekends, one of the two doctors was on call.

In addition, there were registered nurses on duty 24 hours a day. I think there were 4 during the daytime hours and 2 in the overnight hours, but am not positive on that. In addition to the nurses, they had probably 4 nurses’ aides who came in to make the patient comfortable and respond to requests from the family. They worked in teams of 2 to turn the patient, etc.

Other staff included the social worker, the receptionist and the cleaning person. For only 11 patients, the staff to patient ratio was wonderful.

The morning after dad arrived, I telephoned to see how he had spent the night. They said he was comfortable. When I got there to visit, I found dad asleep. In fact, he slept all that day with few waking periods. Somehow the move from the hospital to the hospice had worn him out. Or perhaps he was just finally comfortable enough to sleep through for hours at a time.

At hospice they did not insist on making him sit up in bed or move to a chair. He stayed in the bed all the time. Nurses or aides came to turn him or change his position at least every 2 hours to prevent bed sores, etc. They positioned him with pillows on both sides. The doctor explained that they did not need to make him sit because he was not being prepared to be discharged to home or rehab. Now they could do whatever made them most comfortable, whether sitting or laying down.

In addition, he was now getting liquid oral medicine (morphine) for pain every 4 hours. Also the doctor or nurse checked him periodically to ascertain that he was not uncomfortable or in pain. Another medication was on orders if he needed it for anxiety.

The doctor came to dad’s room each morning to assess his condition and determine if any changes in standing orders were needed. Later he would explain to me what was happening based on this assessment.

Once in hospice, dad never talked again. He appeared comfortable and was able to shake his head to indicate yes or no. He didn’t like to be repositioned and moaned audibly when he was moved even a little. He liked to get some water from a syringe or small sponge on a stick. His mouth was drying out as he was mouth breathing all the time now.

I put my hand near dad’s hand on his bed when I arrived and periodically through the day. Most of the time those first few days, he reached out and grabbed my hand and squeezed it tight. That was how we communicated most. I talked to dad and waited for him to shake his head or squeeze my hand.

Each day I arrived around noon and late in the afternoon my son and or my daughter would arrive. We would then all visit for awhile. My daughter was great about going straight to dad. We weren’t sure if he could see the last few days, but she would go right up to him and speak loudly. “Hi Grandpa. It is your granddaughter (she gave her name). Give me a kiss!” Then he would pucker up his lips for a kiss. Until the last 2 days, she was still able to get him to pucker up and squeeze her hand.

My second daughter came from her home which was several hours away to spend the weekend and say goodbye to her grandfather. She was also able to take me places in the morning on the snowy icy roads as I had errands I needed to run. We also stopped at a deli each morning to pick up sandwiches before we went to visit dad. Over the weekend, my children and I spent most of each day with dad.

All the patient’s meals and the soups were sent over from the hospital which was just around the corner. Dad wasn’t hungry at all and never ate a meal, but most days I had soup at midday.

To be continued…

 

Posted in Caregiving, death and dying, Elder Care, Eldercare, Hospice | Tagged , , , , , | 13 Comments

Dad’s Heart Attack Hospitalization

Last time I wrote about dad’s heart attack which occurred almost immediately after I left home for a winter vacation. Dad was admitted into the hospital because he had a second heart attack while in the emergency room.

Dad’s nurse companion was an enormous help to me while he was in the emergency room (and I was hundreds of miles away) and later while he was still in the hospital. Even after I returned home, I was so stressed and panicked that I couldn’t figure out how to do everything I needed to do during daytime working hours. I was supposed to be making phone calls and I felt like I needed to be dad’s advocate in the hospital. I decided to ask if dad’s nurse companion could spend a few hours with him in the hospital each morning and then I would get there just as his lunch was arriving.

This left me a few hours each morning for phone calls and shopping. I had cleaned out the refrigerator and freezer before leaving for vacation and there was literally no food in the house. I had to restock for my immediate needs while trying not to purchase too much. I also had to telephone my long term care manager and others to help me determine what kind of long term placement would work best for dad.

My goal for years had been to avoid another bad nursing home experience. Yet he could not get hospice care at his current Assisted Living Facility. They had neither the skilled staff nor experience for a resident in dad’s serious condition. They also had a policy of no hospice unless the family hired 24 hour nurses to be with the resident.

I arranged for dad to vacate that facility as it was clear he would never return. I telephoned the cable and telephone companies to discontinue his service and arranged for a mover to remove all his furniture. My daughter accompanied me on 3 separate trips to his room at the ALF to remove all his clothing and belongings, clean the room and confirm that we had not left anything behind.

Each day my son or daughter or both met me at the hospital after work and stayed for a visit with dad and then drove me home. I emailed my sister and brother to come now if they wanted to see dad while he was still able to communicate. Both live a distance away and neither came.

I was fairly satisfied with dad’s care in the hospital but still felt I had to be there to advocate for dad each time he needed something. He forgot to push the call button and instead just yelled that he needed “a boost” as he was sliding out of the rolling chair they had put him in. It seems like all the hospitals and nursing homes I have encountered use these rolling recliner chairs for patients. They are too big for dad and he slides out the bottom.

Ever 30 to 60 minutes he needed to be boosted back to a sitting position! I knew why they wanted him in a chair for a few hours each day for his meals and to keep him from laying down all day. Nevertheless, dad was uncomfortable in it and I had to constantly call for a nurses’ aide to help reposition him.

Then the aide would call for a 2nd person as the protocol called for 2 people, one on each side of dad, to boost him up or move him from chair to bed or back again. Since dad was on hospice, he wasn’t getting usual medical care and nurses had to spend more time with the sick patients getting treatment. I felt like he needed me there to be sure he got the attention he needed.

For the most part, I was satisfied with the care dad got in the hospital from the nurses, aides, techs, and other staff. There was only one young aide who rolled her eyes at me when I said he needed to be repositioned. She had come in 20 minutes before and by herself could only stuff a pillow on one side of dad. He soon was tilted uncomfortably and I called for him to be boosted. She said she “just gave him a pillow” and I said he needed a boost, not just a pillow. To her, he was just one more patient and she was busy. To me, he was my dad.

While in the hospital, dad ate very little. The only thing he wanted to drink was cola, and they didn’t keep it in the refrigerator in the unit. They did have ginger ale and juices and other beverages, but dad just sipped the water but often refused it. I soon learned to pick up a bottle of Pepsi each morning in the hospital on the way up to dad’s room. Most days he drank ¾ of that bottle of Pepsi and often that was all he had.

Other days he had a half banana one day or some part of his dinner another. But by the end of the week he still wasn’t hungry and often didn’t even touch his dinner tray.

Each day I talked to the hospice nurse who came by to check on dad and she referred me to their social worker. The social worker group was short staffed as a stomach bug had hit that group. After about 5 days I had a good discussion with the social worker about what I wanted to find for dad, and what she could find with any openings.

Everyone knew I wanted inpatient hospice. But if that wasn’t available I wanted one of the small nursing homes rather than the large ones affiliated with the hospital. I felt like dad needed more attention than he could get in a facility with a lot of patients.

Amazingly, after dad was in the hospital a full week, I received a phone call from the hospice social worker. She told me about a hospice bed that was available. It was a special bed in that it was called a “resident bed” and was the only one that could be occupied by a hospice patient on a slightly longer term basis. In fact, the resident bed could be occupied for 3 months or more.

The other beds were for hospice patients whose families needed a respite of up to 5 days.  Another possible way was for patients to come in for up to 2 weeks to get their medications adjusted for relief of pain or other serious symptoms.  Dad didn’t meet those criteria.

The only issue for the resident bed was that while all the other beds met Medicare requirements for hospice and were free to patients, this one was available only if the patient’s family paid $5000 for 2 weeks or $10,000 per month. That was just under the cost of a nursing home (which was $12,000 per month). I didn’t hesitate. “I’ll take it”. I said.

The SW explained that dad would get the exact same care in the resident bed. And in fact, the room was slightly larger. And once he met the hospice criteria, he would probably be reclassified into a regular hospice patient.

She filled out the papers and by Friday afternoon I signed them and paid for the first 2 weeks. The ambulance crew was to come at 5 PM to pick up dad and take him to the hospice which was actually just around the corner from the hospital.

Posted in Caregiving, death and dying, Elder Care, Eldercare, Hospice, hospital, nursing home | Tagged , , , , , , | 5 Comments

Dad’s Heart Attack

Dad’s Heart Attack

The last time I wrote that dad had just had a heart attack. In this post, I will tell about the events at that time. I had arranged for some companions to visit dad 4 days a week while I flew south for a winter respite. But as my departure date came closer, I began to get nervous about leaving. I knew that dad had done well with his companions each year for the last 3 years. And I knew he could just as easily die in his sleep even while I was just a few miles away in my home.

Our last visit though, I became concerned when he went in the bathroom and literally didn’t come out for 2 hours. I asked my son to go in after him, but he was embarrassed so I went in myself and asked dad if he had gastrointestinal problems. He insisted he was “fine” but nevertheless didn’t come out. Finally he did, and I spoke with the staff. Since it was Sunday neither the nurse nor the director were there.

I asked the Aides to keep an eye on dad and I emailed the director when I got home. The ALF had just hired a new nurse after a month without one. I requested that they have dad checked for a UTI and have his doctor’s office NP check him the next day.

The director called me before I flew out of town telling me that the nurse practitioner would see him that afternoon. She said dad had come to the dining room for his breakfast and lunch and seemed fine. But that evening after I arrived at my destination, she emailed to say the NP had ordered some tests including an ultrasound and a blood test.

By Tuesday they were saying he had congestive heart failure. His Monday companion had called to tell me he had shoulder pain and his ALF just gave him Tylenol for it. She felt it could be more serious than that.

His Tuesday companion was a retired NP. I asked her if she thought I should just go home. She said she could be there with him as needed and suggested I wait for the results of the tests just ordered.

Wednesday none of the companions were scheduled to be there and dad seemed stable. But early on Thursday the new ALF nurse called to say dad told her he was not feeling well and wanted to go to the hospital. I said if he wants to go to the hospital send him NOW as he never was willing to go before, even during his gall bladder attack. They called 911 for an ambulance to take him to the ER.

I called the nurse companion and asked if she could be there with dad when he gets to the hospital. Somehow she managed to get there and brought the MOLST form from the ALF. I had called my daughter and son, and they managed to get to the hospital shortly thereafter.

The nurse companion called me and said they thought the congestive heart failure was the result of a recent heart attack. Blood tests indicated that. Then by the time the nurse companion had to leave, my daughter arrived and stayed with dad in the ER. Soon my son arrived.

My daughter called me but she was crying so hard I couldn’t understand her. The doctor was asking her questions and she needed to know if he had a DNR. I said yes, don’t they have the form there? She was incoherent. I told her to calm down. I said I know dad recently had a heart attack and now he is in the ER. Somehow she managed to tell me that dad was in the process of having another heart attack right there in the ER and the doctors and nurses were treating dad while she was on the phone with me.

Somehow dad survived that and the doctor took the phone from my daughter and talked to me. He said the situation was serious and I should come immediately. I said I thought it was too late in the day to get a flight and it would be morning before I got there. He indicated dad might not make it through the night.

I contacted friends at my vacation rental condo as I don’t have a car when I am on vacation. Friends take me shopping and to or from the airport. Most other destinations are within walking distance. I was in a panic. I couldn’t focus on what to pack. How long would dad survive?

I bought last minute tickets at a reasonable price and packed very few things. I decided to leave everything in my vacation condo – suitcase, clothing, everything except my carry on.  I was to be moved into a different rental while I was gone, so I just put everything in my suitcase and left it there.

I didn’t sleep well knowing dad could be gone by the time I got there. My daughter and son said they didn’t sleep well either.

Friends took me to the airport Friday morning after just 3 days in my vacation condo. I arrived just before noon and my son picked me up. We went straight to the hospital.

Dad was awake and aware of what was going on. My son said dad looked better that day than he had the day before. The PA explained that since dad had survived the night, his chances were looking better than they had the day before. Still, after 2 heart attacks within a week, dad’s heart was badly damaged and his long term survival prospects were poor. They estimated he had about 3 months to live.

The PA wanted to talk to me about hospice. That was good as I wanted to talk to her about hospice too. I signed the papers and by the next day, after getting the necessary signatures from the doctors in charge, dad was put on inpatient hospice. That meant he would remain in the hospital for the time being but instead of curative care, he would get comfort care.

At that point, they removed the IV lines giving him fluids and medications. He had 3 or 4 needles in his arms and they were removed too. Now dad could eat whatever he wanted and drink whatever he wanted. They stopped all his medications except those that might relieve the pain or improve his breathing.

For the next week, I spent mornings making phone calls as I was trying to determine where he would go for hospice – probably a nursing home. I called my care manager for help in getting him into a good one and avoid the bad experiences of the past. I had to arrange rides to the hospital for myself as the roads were covered with snow and I don’t drive on snow. I was very lucky my regular driver was willing to squeeze me into his already busy schedule. Usually I had to give him a week’s notice. But this time he fit me in every day for the time I needed rides. Thank goodness I already had that relationship!

I spent afternoons in the hospital with dad. After a few days it became clear that they were soon going to pressure me to choose a care facility so dad could be discharged. It looked impossible to get him into a free-standing hospice as they had an estimated survival time of 3 months for him and the local free-standing hospices only took inpatients with 2 weeks or less to live.

I will continue this next time….

Posted in Caregiving, Companion, death and dying, Elder Care, Eldercare, Health Care, Hospice, hospital | Tagged , , , , , , , , , | 13 Comments