In Memoriam: Farewell to Doris

Of course, I never called her Doris. I called her Mom - because she was the epitome of a good mother and I didn't feel the least bit odd about calling her that even though she was my mother-in-law, not my own mother. But once she was in the nursing home for a long time, a lot of the people who cared for her referred to her as Doris so I started to think of her that way too.

We first met in 1983 when my then-boyfriend, now husband, Ed, was admitted to the hospital with appendicitis - a perfect way to meet one's future in-laws without any pressure! I still remember my first sight of her and my future father-in-law in the waiting room at the hospital. It worked out well for me since I am the one who brought Ed to the hospital and made sure they took good care of him. I was in their good graces from Day One.

My mother-in-law was always kind, generous and loving. She never made me feel like an outsider. In fact, later on my father-in-law told me that she always considered me a real daughter, not a daughter-in-law. I feel honored that she felt that way. We were good friends and always found a lot to chat about. Sometimes Ed or his dad had to break in to our conversation in order to get a word in edgewise.

Mom was born in 1928 and grew up in South Amboy, New Jersey, the oldest of five. She went to Catholic school and graduated from St. Mary's High School in 1946, just after the war ended. She then worked as a secretary in a doctor's office for awhile. She met Ed's dad at a local dance - soon after he had returned from serving in the Army during World War II. How could she resist this dashing young man, who was still in uniform when they first met? From the pictures I found in an old photo album, they made quite a handsome couple as they were dating.

They married in 1948. She was 20, he was 22. Mom only worked until their son was born in 1952, and then became a homemaker. Dad, who had become an engineer, was the breadwinner.

During her last illness, Dad said over and over what a wonderful wife and mother she was... but he also revealed they were truly a product of that pre-women's liberation era.

He said when they got married, she had wanted to go to school, and he said she could -- but he told her she would not work afterward. He said he told her she was to stay home and take care of any children they had, take care of the house and have dinner on the table, and he would earn the money. So she did. "You know," he reminisced, "We never had an argument in all those years."

When Ed was older and in college - they only had the one child - she did work briefly as an administrative assistant in a doctor's office and as a secretary in the local high school. Ed said she loved it. But by the time I met them she was home again. As she once told me, "Dad wanted me home." He wanted to know he could call her any time of day and she'd be able to talk to him, or run an errand if need be.

Mom was kept busy with all of her homemaking duties. The house was always spotless; no speck of dust would dare appear on any surface. She was an excellent cook, able to make everything from roasts to fried fish that was light as a feather. She made a pumpkin pie that was everything a pumpkin pie should be. She made fabulous cakes. She was an expert seamstress and made a lot of clothes, including men's jackets, and drapes for the living room. She helped a friend's Girl Scout troop earn their sewing badge by teaching the little girls how to sew. She wrote a weekly social column in the local newspaper. And she was president of the Women's Club, the Garden Club and the PTO.

Every summer the whole family would go on a road trip, including four cross-country journeys where they toured the national parks and other sites of interest. A map still hanging on the wall of the family room marks with red pins the various spots they stopped along the way on each trip. They also took trips with Ed's grandparents, to Florida a few times, and once to the Bahamas.

Right before I met her, Ed had told me his mom had just gotten her real estate license. She later explained to me that Dad was getting close to retirement age and she thought it was something they could kind of do together - she could do the selling and he could help with the paperwork, which would keep him busy in retirement.

But it was not to be. Dad's whole division was laid off when he was 61 and he suddenly found himself retired a year earlier than he had planned. After the first shock wore off - which took only a weekend - he adjusted with lightning speed and immediately started planning all the trips they would take. And Mom never did sell a single house.

Don't feel sorry though... they had a grand time. They went to Hawaii for 4-6 weeks each year (several times with us); they drove up the coast of California repeatedly, and visited the Blue Ridge Mountains multiple times, as well as taking trips with us to Portugal and Italy. They went on a tour of China and walked on the Great Wall. They took a cruise that stopped at various ports of call in Indonesia, Thailand and Singapore. They skied every winter in the French Alps. When they were home they skied locally in the winter and spent time at the town pool each day in the summer.

It sounds as if they were rich, doing all this traveling, but they weren't. They were very frugal and saved their money.

They had moved from Perth Amboy, where they lived when they first married, to Holmdel, New Jersey, in 1958. The house they bought was part of a new development going in where an old apple orchard had once stood. Generous to a fault when giving gifts, they didn't splurge on material things for their home. Instead, they spent it on travel and family.

Dad still lives in the house today; they never "traded up" to something fancier. It's a modest split level home with 3 bedrooms, two of which are quite small. The house still has its original kitchen, and they had the same furniture and carpeting throughout most of their married life until Dad had to spend down some of their money to make Mom eligible for Medicaid in the nursing home, and he installed new carpeting and central air conditioning at that time. I think that was the only improvement that was made to the house, other than painting it, during most of their marriage.

Here are a few pictures of them from their early retirement years. The top left picture is from a cruise they were on, the group picture was taken on Maui, the one below is on the Asia cruise, and the bottom left photo is in our living room at Christmas one year.

Sadly, my mother-in-law's dementia began to gradually become noticeable in the early 2000s, when she was in her mid-to-late 70s. She started to forget things and ask the same questions over and over. Then she began to lose her vocabulary. She still went on trips to Hawaii and California as long as she was able to function, but on the last trip to the California coast, Dad realized she couldn't cope with traveling anymore. She was too confused.

He carried on, taking care of her at home, until he was struck with illness in early 2008. He ended up in the hospital and we ended up caring for Mom for a few days. It was then we realized how bad her condition had become. We were still working at the time, and couldn't keep taking days off to care for her, and Dad was going to be in the hospital for a couple of weeks after a severe intestinal bleed and surgery.

So we researched and found a nursing home, Laurel Bay in Keansburg, about 15 minutes from their home, that was able to take her on a temporary basis until Dad recovered and we figured out what to do. Mom at that time became easily agitated and we were very grateful to the wonderful staff who were able to care for her despite the difficulties. Once Dad was out of the hospital he agreed he couldn't care for Mom properly at home anymore. We looked at a few other nursing homes in the area but none were as cozy and homey as Laurel Bay. So that is where Mom stayed, and we are glad she did.

For almost 8 years, Dad went to Laurel Bay twice a day and helped Mom eat her lunch and supper (she had by this time lost the dexterity to feed herself). He knew everyone there and they knew him. Sometimes he drove them crazy because he always made sure his Doris got the best care of anyone there, and let them know if he felt they hadn't lived up to his expectations. But they all understood he did it out of love for her.

Sometimes he'd take a break and go shopping (usually to buy her something) and I would go down and help her eat her lunch. Even though at this point she could no longer speak much at all, she knew me and always gave me a big smile. She knew me right until the last few months, I think. I would chat with her as if she could answer back and let her know what was going on. I always wondered whether she was just trapped in her mind and couldn't speak but did understand. It must have been so frustrating for her.

She had a wonderful caregiver, Obai, who is originally from Haiti. She and Mom developed a very special relationship. They understood each other and Obai truly loved her. A former hairdresser in her native country, Obai loved to dress Mom up for the "elegant dining" events they had three or four times a year, and she'd always do something special to her hair.

Elegant dining was a really nice event; they had a singer there who would sing a range of songs from the old standards to more modern rock-and-roll from the 50s and early 60s, to accommodate the various age groups at the nursing home. The cooks would make a special dinner, complete with appetizers and desserts, and they served wine. Mom enjoyed these events a lot when she was first there. Later she was less responsive but I still think she liked the music and she always ate all her food.

Here are a few pictures where Mom is dressed up for these events. The black-and-white picture is her with Obai.

Dad did get away for some respite from caring for Mom. We had bought our cabin in the Adirondacks just after she went into the nursing home, so he started to come up for long weekends about once a month or so to relax. While he was away, he called the nursing home, without fail, at noontime, to make sure Doris had eaten her lunch and that she was doing well. For a long time she was.

In the past year or so, though, she began declining. She was having more trouble chewing and swallowing and they put her on thickened liquids and pureed food. I knew, from experience with my own father, who had had dementia in his later years, that this was the beginning of the end. But Ed's dad never looked at it that way. To him, anything that went wrong could be fixed, as long as he tried hard enough. And try he did. He blamed her problems on everything possible except the dementia. I don't think he ever admitted that it was a terminal disease.

Just before she truly could not swallow at all anymore, we had a discussion about whether he would choose to put in a feeding tube if she could no longer swallow her food. At that time he said no. But when the time came, about two weeks later, he couldn't let her go. There was even a piece of paper, in her own handwriting, that had been found among her belongings at home a couple of years ago, that said she did not want to be kept alive by artificial means. "Let me die in peace," she wrote, and signed and dated it, in the mid-1990s. She had seen her own mother die in a nursing home from dementia. She knew what awaited her if she got it too.

Dad didn't agree that a feeding tube was "artificial means." He said he "couldn't let her starve." So she got the feeding tube, and he got three more months with her. He was happy just holding her hand - he said she squeezed his hand so tightly he knew she knew he was there. I hope that was true and not just some reflex she had.

The end finally came despite the feeding tube, or maybe because of it. She got pneumonia, ended up in the hospital for yet another time (she had had pneumonia several times in the last year of her life due to her inability to swallow properly, which causes aspiration pneumonia, even when someone isn't being fed by mouth). She then began vomiting blood. The doctor, who was a very compassionate woman, said it was common for people with feeding tubes to get bleeding ulcers. She gently told Dad that "it is time to let her go." He finally agreed to sign a "do not resuscitate" order. Mom was put into a private room and Dad kept watch over her for three days, going home only to sleep. We were there as well for much of the time. She finally drifted peacefully away on October 20, 2015.

It was Dad that couldn't bear to let her go. And it is heartbreaking to see his grief. But the next morning when I woke up, I felt her presence around me, and a great sense of joy. I am not a big believer in an afterlife or religion, but I do think there is something out there after death. I do know I felt that she is finally free and able to express herself again and is happy, wherever she is. I am not sad for her, I am happy for her. I hope Dad will feel that way someday too. I know she would want him to.

Fighting the Rat of Death

It's been a rough year. First Baxter was sick and we weren't sure if he was going to make it - thankfully, as he explained in the last post, he is doing well.

Then my mother-in-law, who has dementia and has been in a nursing home for nearly 8 years, started declining rapidly, after being relatively stable for a long time. Looking back, we realized she had been declining all along, but so gradually we didn't really notice it until this year. By June she had forgotten how to swallow properly and had started getting recurrent cases of aspiration pneumonia. Finally, she wasn't able to eat at all. DH's father made the decision to have a feeding tube inserted to enable her to continue to eat. "I can't just starve her," he said.

DH and I had looked into this back in 2005 when my own father was in a nursing home with dementia and was no longer able to swallow. All of the literature we read online and elsewhere said that inserting a feeding tube when someone has dementia and has lost the ability to swallow does nothing to prolong life and just results in numerous, constant complications.

Unfortunately, after 67 years of marriage, in the end, DH's dad couldn't let her go. He wanted just a few more months with her. So, the feeding tube was inserted after a few days of angst and tears on all sides. (Except for my mother-in-law, who, thankfully, had no idea of the drama circling around her). She hasn't been able to speak, other than occasional grunts or simple yes or no answers, for years, and at this point she was hardly even doing that, and was sleeping most of the time.

Next came a problem with our 13 or 14-year-old dog Diva. We adopted her 10 years ago, but were never really sure how old she was at that time. Given her arthritis and very grey muzzle, we are thinking she may have been as old as 4 when we adopted her, making her 14 now.

We started to notice changes in her behavior over the summer. She gradually stopped coming upstairs to sleep on our bed, preferring to stay downstairs on her own bed nearby her adoptive "sister," Angel.

Then in September we realized she was getting very deaf, and more and more sensitive to odd noises. She had developed a fear of thunder and fireworks a few years ago, but now she became afraid of acorns falling on the tin roof at our cabin in the Adirondacks, nail guns, hammering, and any other abrupt noises. She started shaking whenever one of these objectionable sounds occurred.

Then we went to Cape Cod for a week and she acted nervous in the car going up, panting and restless; then at the cottage, a new one for us that we hadn't stayed at before, she started acting nervous and pacing around every evening.

We had gotten a prescription for Xanax from the vet for her since we had started noticing this nervousness before we left, and that calmed her down but didn't cure the problem. She decided the bathroom was the only safe place to sleep, so we put her bed in there. Not very convenient when we got up in the middle of the night to use the facilities, but at least Diva was happy. We were afraid she was developing doggie dementia and that it was a sign of age and it would only get worse...

Then, the day after we got home, we finally realized what might be part of the problem - she had a urinary tract infection! She started asking to go out and urinate every half hour and we realized there was blood in her urine. We rushed over to our local emergency veterinarian clinic and had her checked out and the vet gave us antibiotics and painkillers for her. After only a day on the antibiotics and painkillers, her behavior became much more normal. After two weeks she seems back to her old self; but she still won't sleep on our bed.

We were up at the cabin this past week while she was still getting better, and we were still worrying about her, as well as DH's mom, who was back in the hospital with yet another bout of pneumonia. She had also developed a C. difficile intestinal infection from the antibiotics she was being given for the pneumonia, and was not doing well at all. Based on my experience with my own mother, this infection could very well be what swept her away.

One night while we were at the cabin, DH had a terrible nightmare. I woke to find him pawing my shoulder and making odd noises. I finally shook him awake and said, "What's wrong?" He said, "A rat. A huge rat."

The next day he remembered the dream: He had been dreaming there was this huge, snarling rat attacking Diva, and he was trying to beat it with some kind of a stick and get it away from her. He had been calling for our other dog Angel to come kill it but she was nowhere around in the dream. He said it was one of those dreams where you can't do anything -- you can't hit the rat, you can't move fast enough, nothing works.

I told him it must have been that he was fighting the Rat of Death and trying to keep it from Diva, and that Diva might be representative of his mother as well, since he was so worried about both of them.

The next day one of the doctors taking care of his mother in the hospital in New Jersey called to tell us that his mom had taken a turn for the worse and it was really time to let her go; he said it was unfair to keep having her go back to the hospital for treatment over and over, and make her suffer further (which of course we did agree with).

We left the cabin earlier than we'd planned and returned home, arriving late in the evening The next day we received a morning call from the doctor overseeing my mother-in-law's care to tell us she'd had to entubate her after she had stopped breathing earlier that morning, because DH's dad had not made a decision to put her on palliative care. She said Mom had been moved to intensive care.

We met at the hospital along with DH's dad, and told them we would like her taken off the respirator, expecting her to pass away an hour or so later.

As it turned out, after the respirator was removed, she stabilized and has been holding her own ever since. She is being given morphine and is no longer receiving any curative measures. But she continues to fight against the Rat of Death a little longer.

My father-in-law asks, "Why? Why am I going through all this at this stage of my life?" I can't give him an answer.

A Bit of Good Timing and a Final Farewell

We spent last week at Cape Cod. Yes, that was the week that the entire Northeast was getting pummeled by the remnants of Tropical Storm Nicole. Home in New Jersey, the rain was unending and torrential, from what I understand. But guess what? It didn't hit the Cape.

We were really lucky - our weather was warm and summerlike nearly every day. It rained lightly at night a couple of times but cleared off by morning. We did have one foggy gray day, but it didn't rain. Friday of the week we were there, it did rain - but not until the afternoon, after we'd already been to the beach and Diva had had her swim in the pond. So we really chose the right week to get out of town.

Below is Diva enjoying the beach.


The main purpose in going to the Cape for the second time this year was to bring some of my mother's ashes and scatter them at the Cape where she spent time almost every summer since she was a little girl. We had also paid to have a bench installed with a plaque in memory of my mother and father in the little park surrounding the Eastham Windmill, so we wanted to see that as well.

My half-sister and brother-in-law came up for several days to join us, as they had not been able to attend my mother's memorial service and wanted to be there for this second event.

We brought some of the ashes down to the bay and I scratched them into the sand and let the water wash over them. My sister said a few words that brought tears to my eyes, and we stood there for awhile looking out at the bay afterwards. It was a cool and windy day and there was no one on the beach but us.

Another day, we brought a few of the ashes over to the Windmill park and put them under the bench as a little dedication. I have no idea if this is legal or not but we only used a small symbolic amount. Here are my sister and me, sitting on the bench:


And here is the view of the windmill from the bench.


I still have a lot of my mother's ashes left. I may take some to Scotland next time we go - it was my mother's other favorite place. I didn't realize what a large amount of ashes there would be - the other half are buried next to my father in the cemetery, so I thought there wouldn't be that much. I could scatter Mom in a number of other significant locations if I want to. Israel is another place that comes to mind; she loved her trip there back in 1990. While some people wouldn't like the idea of being scattered hither and yon, my mother, who loved to travel, would probably think it's a great idea.

One thing I won't be doing is embedding them in a tattoo or snorting them with cocaine a la Keith Richards.

We had a good time at the Cape, but of course, it reminded me of my mom all over again. But at least I'll always know there is a little bit of her that will forever be there with me.

She's Not Dead Yet!

Monty Python's classic "Bring Out Your Dead" clip pretty much describes how my day at the hospital nearly went.

My mother had a bad setback two days ago. As many of you know, she was rehospitalized a week ago with dehydration and high potassium but she had been making progress, was eating about as well as she usually does, and was doing OK using a Bi-Pap machine to help her breathe except when she was eating, since it involves a mask over her face.

So I had gone to the hospital around suppertime since that was when I could talk to her without her wearing the mask, plus I could help her eat. So there I was, trying to be the ever-helpful daughter, and coaxing her to eat and drink more. She was having a little trouble with choking a bit on her food and said she didn't want anymore, so I encouraged her to have a sip of milk. She sipped it and at first she seemed fine but then started to cough. Not a big deal for anyone who has something go down the wrong way, but because of her weak lungs she was having trouble getting it out. I asked someone to get the nurse, thinking perhaps she needed some suction or something to help her, when suddenly she just flopped over.

After I tried to wake her up I went and got the nurse, who came in and checked her pulse and found there was none. In a split second I had to decide whether to have her revived or not, and since I felt responsible for the whole thing, decided to have her receive a full "code." I was kind of crowded into the back of the room so I just sat there calmly while all this went on around me, as if I were an extra in an "ER" episode playing the part of the concerned family member. (No, they didn't need to use the paddles or yell "Clear!" so apparently it wasn't that hard to bring her back with some CPR and epinephrine.)

Naturally she was entubated to be able to keep oxygen going to her brain during all of this, so they took her back to the ICU and put her on a ventilator. She woke up and was aware of her surroundings, and the next day, although not able to talk due to the ventilator, she was perfectly cognizant and able to nod yes or no and express things with her eyes and hands.

But immediately the resident doctors who are in the ICU began asking me what the next step would be if she couldn't get off the ventilator. I had decided I didn't want her resuscitated a second time, and signed a paper stating that. I also knew I didn't want her to have a tracheostomy, where they would put a hole in her throat to assiste her breathing so that at least she could talk again. But she would have to have it for the rest of her life and it sounded like a very uncomfortable procedure with a limited outcome, given her age and condition.

She did well overnight but when they tried to wean her off the ventilator yesterday they said she couldn't come off it yet. The resident again asked me what my next step would be. She said they didn't usually keep them on a ventilator more than 3 days if there isn't an ability to take them off. Her recommendation was the tracheostomy which I had decided not to do.

We waited till today and went to see her and another resident asked me bluntly if we had made a decision yet on the ventilator. My mother, you have to understand, at this point is doing fine on the ventilator - oxygen levels, heart rate, blood pressure all good. The only problem is they don't think she can go off of it. My aunt and I came back later on and told this resident that yes, we would try taking her off it and that we understood she might not survive. I did say I'd like to talk to the attending physician first.

Lo and behold, the pulmonologist came in to the room and said Mom is doing OK - that she is 91 years old and will naturally take longer to come back and be able to get off the vent. He said he certainly saw no reason to rush into anything without giving it a few more days. They had started giving her liquid nourishment (since she can't eat with the vent in her throat) and he said this may give her more strength and she'll better withstand the removal of the vent.

Thank goodness he came in and told me this. I had made up my mind to be resolute and get this done for my mother's own good, thinking there would be no other choice. I know she hates the thing being down her throat and she did say yes (nodding and even writing it on a piece of paper) when I asked her if she wanted it off "no matter what" and gave her a pretty good idea that if it didn't work, that would be it.

But as it turned out, once again, "reports of her death were exaggerated." It is my belief that residents, no matter how skillful and and well-intentioned, should not be the doctors discussing end-of-life decisions with the family. They don't have enough experience to know what may or may not happen in specific circumstances. They only know the protocols and procedures they have been taught and only have limited experience in real life situations.

This is another example of the failure of our health care system and another reason "end-of-life" discussions should be covered in our healthcare as a matter of course, so that we get a better opportunity to talk about all of the pros and cons of a situation with a team of knowledgable professionals.

I am not blaming only the resident; I experienced a similar situation last time she was hospitalized with the pulmonologist who is the partner of the one I spoke to today (I like to call him "Dr. Death.") He practically convinced me my mother was not long for the world when she was in the hospital last time. She came home and lived two months at home after that, enjoying her day-to-day life; she had Easter dinner and Mother's Day celebrations over at our house, as well as enjoying a lovely lobster dinner sitting outside on our deck, with us, her stepdaughter (my half-sister) and her husband, who came up to see her from South Carolina earlier this month.

I sometimes wonder whether doctors realize how influential their attitudes can be on these types of decisions. In the case of Dr. Death, I got the distinct impression he disapproved when I told him I had not signed a DNR on my mother at that time. Guess he thought at 91 she wasn't worth saving, or knew that even if she recovered this time, she'd be back again soon - and of course, she was.

But what these doctors don't realize is that even a couple of months can be worthwhile for a person that age - another enjoyable family get-together, another chance to smell flowers and feel the breeze on her face. It isn't the quantity of the time, but the quality.

I second-guessed myself somewhat after I had them resuscitate my mother the other day. It had been very peaceful and I wondered if I'd done the right thing by having them revive her. But she did come out of it with her brain intact and as a result, at least my aunt, her sister, was able to come in and visit her and talk to her again. These things are important, both for the ill person and for the family.

I'm not saying anything against anyone who has made the choice, with or without a discussion with their loved one, not to pursue aggressive treatment. Each choice should be individual and based on the feelings of both the patient and their family.

But the doctors' influence should be kept to a minimum. The doctor should tell the family and the patient what the pros and cons are, what the prognosis is, what they might expect depending on what course of action they take, and then let the patient and the family decide. The family should not be rushed in this decision and should be given as much time as is needed, as long as the patient is not suffering.

Just thought I should share this experience in case anyone else has been struggling with this type of situation. There are no easy answers, but be aware that you need to get plenty of second opinions before making a decision. You don't want your loved one to be put in the position of yelling, "But I'm not dead yet!"