Have you experienced the expected death of a loved one at home?

Miscellaneous and Personal Stuff I Must Share
1

Today we brought my grandfather home from the hospital. There is nothing more the doctors can do. We are working with hospice to make him as comfortable as possible. He is 84, has diabetes, lost a kidney to cancer 2 years ago, the remaining kidney is functioning at less than 10%, he had a stroke a year ago, he has congestive heart failure, pneumonia, and a severe bladder infection he cannot shake. Last thurday he fell and broke his hip. Sometime between the morning he broke his hip and the emergency surgery that afternoon he had six strokes. That night he had a heart attack.

Have any of you experienced the expected death of a loved one at home? I have read a number of hospice sites and other info on the web, so that really is not what I am looking for here. I want your personal stories, if you feel like sharing.

What physical changes did you notice as death approached? Did you continue to have conversations while they were unconscious? Did they use oxygen? An i.v.?

I guess there is no way for a family to be prepared for this. Hospice is great, and we are asking them a million questions too.

I really love him and want to do right by him.

And if you feel led, pray for my family. :slight_smile:

2

I have recently experienced what you are asking about.

I’m not sure my experience will help you much as each case is so very individual.

My Mother in law took a full ten weeks to die, there were seizures and many other frightening things before we reached the end of our journey together.

I had 5, almost 6 years of caring for her in bed so you’d have thought I’d be well prepared but there isn’t really any way to be prepared for the final dance when it comes.

We were fortunate, no oxegen or IV but pain management can be a real challenge. It was the first time in the 6 years I really felt out of my depth.

My loved one had good and then bad days, I took unrealistic hope from the good days even when they were only ‘less bad’ days really. I continued to speak to her long after I was certain she could hear or understand, after 6 years I really couldn’t do otherwise.

There were days when her breathing was so laboured that the pros all thought she was going, like, soon. But still weeks went by. They can’t predict, no one can.

There were days when she saw people who were long dead in her room, including her husband. It seemed to give her great comfort so I never corrected her when we got to the end game.

She went through a couple of days where it seemed her every fear, a lifetime’s worth, was manifest, one after another. At the time I thought it was the meds, now I see it was probably not. I remember a 24hr period sitting at her bedside and holding her hand and reassuring her that; her Dad won’t be angry she’s late, her child is not out in traffic, her husband is not waiting to come for her, her best friend is not lost at the mall, etc, etc. It was truly awful, but it passed and she came to a more mellow place.

It was during this time that she said some remarkable things, even though speaking had become very difficult for her. I remember her wispering to me, conspiratorially, when I’d come into her room unexpectedly, “They all have their sorrow.” I wasn’t sure I’d heard her, but she repeated it. When I asked who she was refering to, she said, “Dead people”. Since she was wispering I asked if any were ‘here’ with us, she wispered yes there was one right next to her. I asked if she knew whom it was and she said yes it was her husband’s cousin.

I can tell you all about my experience, what I read, the advice I was given but I fear little of it will apply to you in the end. My best advice is to be truly present, try not to be distracted by the things you can control, visitors, meds, housekeeping which seems to be most peoples inclination at such times. Don’t be afraid to touch, encourage others to do the same.

I found by having her in my home a lot of responsibility fell on me to help others in the family to make it through. My willingness to rearrange the furniture and pull the chair up to the bed, to accomodate hand holding and touching opened them up.

Also keep telling them they are okay, that they are doing wonderfully (y’know, at dying effectively). Also take the time to tell them you’re okay, go through everyone in the family, tell him why they’ll all be okay. That he did a wonderful job, that’s it’s okay if he has to go, it’s okay.

But my best advice is to kiss, kiss, kiss.
Soft and gentle puppy kisses on the face.
Even when she was all but gone from me, this always produced the glimmer of life I sought.

I am so sorry to have run on at this length, it was not my intention.

You and your family are in my thoughts and prayers, I wish you all peace.

(Now excuse me while I go have a little theraputic weep!)

3

Be there for them. Talk about your childhood, and get them to tell stories from their life as long as they feel like talking.

Touch them. Hold their hand.

It’s hard to describe - both my uncle and my mother-in-law passed at home and they were very different circumstances.

4

My maternal grandmother died in my bed.

It was Febuary 1986. For most of my childhood my grandmother had lived in Louisiana, but about six months prior my parents had brought her up here to live. I was more than a trifle vexed. Grandmother had four living daughters, all of whom had houses larger than ours; and as my mother was the youngest, she also had the youngest children, which meant that there were more people living at home in at my aunt’s. Now that I am older, of course, I can see that my grandmother wanted to live with us because she was closer to my mother than her other children, and she knew she was coming here to die.

Anyway…I didn’t take to the change in matters anywhere near as gracefully as I should have. Partly that’s because my parents didn’t explicitly tell us that Grandmother was dying. When I figured it out (actually I eavesdropped on a phone conversation) I was simultaneously bereft, angered, and frightened. My mother never DID tell my baby sister that Grandmother was dying; I ended up doing that, because I didn’t want her to be blindsided when it happened.

Anyway–months pass. Grandmother gets worse and worse. One Saturday morning my mother rushed past me, coming out of Grandmother’s room; she told me my grandmother had just died. Shortly all my cousins came over. I remember most vividly my cousin Sam’s reaction, his open weeping. I remember being furious with the paramedics who came over to pronounced her dead; one of them said “Y’all have a nice day.” (!!) I remember taking a walk because I couldn’t think of anything else to do, then coming home and getting my baby sister because that was something to do.

But I’m glad she died in our house rather than in a hospital.

5

She wasn’t at home, but in the hospital. And I had my own sinus surgery scheduled the previous day. Somehow she knew and ‘selected’ to pass away the next day. If I had known, I would have thrown it all out and waited. :smack:

Tripler
::sigh::

6

When I was eleven, my great-grandmother died in her bed. She’d had a stroke a couple weeks before, and had refused all medical treatment.
During that two weeks, I would sit on her bed and talk to her. She could no longer speak. She had told me stories of her life in Wales, for as long as I could remember. I only vaguely understood that she was going to die soon, but I talked to her, because I thought that she must be bored, just lying there, only moving when someone helped her, with nothing interesting to look at or hear. She didn’t like the music of the day, so a radio wasn’t really an option.
I was with her when she sighed her last breath. I knew immediately that she was dead. She no longer looked alive. Her skin color changed, and became waxy looking. The light went out of her eyes.
Maybe she is why I became a nurse. Her death didn’t frighten me. It made me sad, but not afraid.
Since then, I’ve seen many, (too many) people die. It is always sad, but, never frightening. I’ve always talked to my patients, conscious or not. It’s said that hearing is the last to go, so why not talk?
Maybe great grandma is the reason I talk to unresponsive patients, I don’t really know.

7

I’m really glad you do, for what it’s worth.

8

My father died at home. He had lung cancer which moved to other organs and his brain. He was on oxygen maybe the last couple months of his life, but it was on a long cord so he could move around the house. He remained lucid til right near the end. I remember that he asked my mother’s brother, who took those last couple months to be with him and help, that he wanted a bath that night. By then he was too weak to bathe himself. My uncle said “how about tomorrow”, and Dad said that would be too late. It would’ve been. He lapsed into a coma that night and lived in the coma for another week, each day the hospice nurse saying he couldn’t live another day. We talked to him throughout. It was painful, the lingering. The last night my mother and we sibs all said the rosary around his bed. My mother then toasted him with a beer (which she never drank) . He took one last gasp and died. It wasn’t horrible, at least the death wasn’t. The week before was pretty hard on us, but we managed.

I’m sorry for you and your family, but be glad they’re there. Family is sometimes all we have.

StG

9

My mother passed away in June 2003 of peritoneal/ovarian cancer. She was diagnosed in late January 2003, inoperable, but went through 3 rounds of chemo to see if the tumor might shrink enough for surgery to be performed. It didn’t and she went into hospice care in late March. She spent two weeks in a nursing home before being able to go back to her own home, where my daughter (her first grandchild) cared for her until her death.

My daughter was 21 and did not have a job at the time, so she did volunteer to help care for her grandmother–she actually wanted to do it. Hospice was a -huge- help, especially to my daughter in showing her and explaining to her how to administer meds, etc. One of my brothers was there every weekend and I made day trips every two weeks; many of my mothers friends also would come by to “spell” my daughter, giving her a bit of time to herself or one would take her out shopping.

The first month to six weeks, Mom seemed improved or at least happier that she was able to be at home rather than the nursing home - she couldn’t be at home unless someone was there to care for her. When the final decline came, it was fairly rapid–about a month. During this time, she had hallucinations and was paranoid (she accused my daughter of having parties and letting people in the house, etc.). She also “saw” people, some of whom had been dead many years. When she was like that, we just spoke soothingly to her and acknowledged what she was saying but didn’t try to refute it.

I was there the day that she passed (although she didn’t pass until 11 PM or so, I had already gone home that afternoon). She was comatose; her hands were already icy, but I held her hand and squeezed it, and talked to her and kissed her. Our hospice workers had told us that she could probably still hear us, that hearing was the last sense to go; I think that she heard me, because she had tears in her eyes. Leaving her that day was the hardest thing I’ve ever done I think. I knew I’d never see her again.

I hope my experiences and what others have also shared here helps you some. Let the hospice care workers help too. Your family is in my prayers.

10

I experienced the expected death of a loved one at home . . . um . . . yesterday.

My mother’s colon cancer returned and she was hospitalized for a month, and all my efforts were geared to accommodate her wish to die at home. I was the primary caregiver, as I was two years ago during her first bout with cancer and subsequent chemotherapy treatment.

In the hospital she’d had bad days, but good days too (relatively speaking) and we expected to have the same at home, for a while at least. She came home Tuesday and that afternoon seemed OK; she was alert and glad to be home. The hospice nurse came and made sure I understood the nine medications (including Fentanyl and liquid morphine) and that I could monitor the gastric drain and clean the ileostomy bag.

The situation deteriorated rapidly; in addition to discomfort and difficulty eating due to intestinal blockages, she was also having excruciating back pain (longstanding compression fractures) that were exacerbated by the long stay in the hospital bed. The hospice nurses came out Wednesday AND Thursday AND Friday - on Friday the nurse told me that, based on my mother’s heart rate, there wasn’t much time.

The nurses knew her time was close by her heart rate. In retrospect, I see that all of her senses (including sensitivity to pain) heightened in the 24 hours before she died. The day before, I had to go get bottled water because our tap water suddenly tasted horrible to her - she accused me of having put something in it, or of not cleaning it from the last med I’d put in it. When my brother had been by that afternoon, we were all sitting with her; my father stroked her hand and my brother stroked her forehead, and when she told us “no brushing” it took me a minute to realize our caresses were hurting her. When my father and I were up with her in the night, I left the lights off where we were but turned one on in another room, and she had me turn it off as too bright. My father went to make himself some coffee, and the sound of the running water made her cry out and the smell of the coffee nauseated her.

I had moved a bed to the living room so I could be close, and she woke up at 3:30am in great pain. My father and I stayed up with her for two hours and it was . . . horrible. She was crying out, why can’t I die, why can’t I go? But she would alternate that with telling us she loved us, and she even asked what the cats were up to. I gave her as much morphine as I dared, and she fell asleep around 5:30 am. My father went back to bed. I listened to her breathing, ragged at first, and then calm, and I went back to sleep too. When I woke up at 7 am, she was gone. She was already cold. I phoned the hospice nurse, and my brother, and then I woke up my father to tell him.

I am almost 38; my mother was a week shy of 76 and my father is almost 88. Do the math and you’ll see they weren’t spring chickens when I was born. My father has almost every health problem that an aging American male can have (diabetes, heart problems, emphysema, all the health legacies of having smoked for 70 years). I have lived my entire life fearing the imminent death of a parent. I have spent the last two years helping my mother fight cancer, and the last month knowing we had no more cards to play.

I was not prepared.

Postscript:
I have made my life 250 miles from my parents, but I was very close to my mother. She loved to read and she loved odd bits of information and she was my internet before computers came along. When my college roommate and I got into an argument over how Rudolph Valentino died I knew I could resolve it by phoning my mother.

I stumbled onto the SDMB about five weeks ago, and was ecstatic to find out that something like this exists. I’ve been going through the archives as well as checking out the current postings and this has been my safe place in the midst of the chaos. I’ve been trying to figure out how to bring up what I’ve gone though and thank you all for saving my sanity and assuring me that there are indeed people, other than my mother and myself, who love to look at the world from all sorts of angles. So . . . . thank you.

11

Both my grandmothers died at home (in front of me). My mother’s mother had Parkinson’s. Two days after Easter she had a heart attack (& possible a stroke). We lived 2 houses down from her. It was about 11pm when my mom went over. She was going to take her to the hospital, but my grandma resisted and manager to knock the keys out of her hand; then mom realized that this was it. So she and my brother (he & wife lived with grandma) began frantically calling every family member who could concievably make it to her house in the next coulple of minutes. I remember how the moment she died her face “deflated”. It was sudden, but not totally unexpected.

My father mother died 3 years later. She had Alzheimer’s and declinded over several years. Toward the end she could recognize anybody but my grandfather (and would panic if he left the rooms for a few minutes), couldn’t walk, was incontinent, and wouldn’t eat. She was on home-hospic care. Thanksgiving Day she basically fell into a coma. We knew it would happen soon. In order to have T-day dinner with my grandpa we carried to my brother’s house (next-door). We set her up in the living room so that if she died during dinner it wouldn’t disturb the children. We took turns sitting with her. The next day me, my mother, and SIL went down to sit with grandpa that afternoon while the minister was going to “visit” later. Grandma’s bed was in the living room. We were all talking (oddly I can’t remember what about). Then SIL looked over and said “Did you die grandma?” She had stopped breather and we didn’t notice until after. So we called the funeral home, other family etc, and that was that. The cleric didn’t arrive until after she’d been taken to the funeral place. Her’s was the first funeral I had a part in making the arrangments, I was 19.

12

My sister died of CF when I was 12. She’d been in and out of the hospital for the past year and a half; her lung had collapsed three times. About three months after she got home the last, time told my father that she didn’t think she was getting better. She said she thought she was getting worse. The doctor examined her and said that she was dying, "And there’s not a damn thing we can do about it (which made me think, “okay thanks, Hawkeye”). Anyway, she was detrirating very quickly, and she lived two more days. Everyone in the family had a chance to say goodbye, as well as a few friends, and then we just spent the night sitting around the living room, mostly litening to her breathe by the nighttime she was slipping in and out of consciousness.
The next day she was worse. She wasn’t saying much. She wasn’t even conscious that much. The associate pastor was by the next afternoon. She was conscious for the Last Rites, and able to nod her head at the appropriate times. At the end, she sat bolt upright and said, “I’m scared.” He reassured her, told her it was natural to be scared, but yada yada you go to God sinless, Jesus is waiting for you. He’s looking at His wristwatch and tapping his foot, etc. etc. She calmed down and closed he eys then, and didn’t say anything else. Late in the afternoon, I was in the dining room with my brother, and heard her breathing get rough and labored and I called my father. My mother had left with the younger kids. I’m not sure where. So anyway I’ll justr say I watched her expire, and it was a little upsetting but I’m glad I was threre when it happened

13

Not in “my” home, but great-grandma died at home. The only reason anybody had to expect her death was that she was 96 - no Parkinson’s, no cancer, no Alzheimer’s, heart like a water pump minus the rust.

One day she went to take her usual after-lunch nap and when her daughter went to wake her up, she didn’t.
Waaaay back when, my grandmother’s first daughter got “a cold”. That’s what the doctor said. She was 3 years old, high fever; the doctor insisted it was “a cold”. Problems breathing, “a cold”. Died. The doctor still said it was “a cold” and that “with kids that age, well, they can die from anything”.
My mother was born a few months later. When she was 3, she got “a cold”; Grandma said “I already lost a daughter to a cold that sounded like that one” and didn’t stop until she found a doctor who called it “pneumonia”. A lot of trips to a fourth floor with no lift, with the doctor in gramp’s arms (the doctor couldn’t walk upstairs), an oxygen tent (this was in post-war Spain, you couldn’t get chicken broth if you didn’t have relatives in a farm so imagine needing oxygen) and 61 years later, Mom’s still around and so are myself and my bros.
That first daughter shared Grandma’s name; so does the third daughter. Grandma always explains that she didn’t choose that name to perpetuate herself but because she happens to like it, and that she wasn’t able to give it to one of her daughters again until her mourning was over, until the name felt “ghost-free”. She gets terribly worked up whenever someone who should know better says “you had two daughters, right?” No, she had three, thank you much.

14

My father in law died at home. He was in hospice care for nine months. I believe he was comfortable for the most part. He had a stroke seven years prior to the cancer diagnosis and was rather difficult to communicate with toward the end. You will notice that the skin becomes waxy looking. Breathing becomes shallow. There are other signs…they sleep almost constantly, so you will be looking for each breath toward the end.

I’ve been with my mom and my ex when they died in the hospital, and it is pretty much the same. We played cards, chatted amongst ourselves, and said our good byes. When the end comes, there is a sense of relief even though you are sad. And even though you know it’s coming, I don’t think anyone can be prepared for the final exit.

We took a picture of the sunset (about 5 min. after he died). It’s in the book of memories my in-laws compiled. http://pg.photos.yahoo.com/ph/karlen1956/album?.dir=/29edscd

15

My mother, after a long battle with metastatic lung cancer.

She battled it for close to a year, and after a family function on Labor Day 00, she went to bed for the last time. She hung on until after the election.

The last week, she went way down hill. She was so weak that all she could do was keep her eyes open. By Saturday, she was pretty much in a coma. Sunday morning, she rallied enough to be awake, and we knew what that meant. My sister and I said our final goodbyes, and she went back under for the last time.

Sunday afternoon, her face changed, especially around her eyes, which reminded us of the look of the unwrapped Egyptian mummies. I’m thoroughly convinced that at that point, she was gone in the spiritual sense.

Monday evening, and the immediate family gathered for fast and cheap dinner on the deathwatch. My aunt was cooking, and I noticed her breathing was slowing down. We gathered around her bed, and watched her breathe her last. I even felt for breathe and pulse, and noted the time. I went to call the hospice and the funeral home, and then we sat down to eat. We finished eating just as the mortuary attendants showed up.

I think the worst part of it all was making the phone calls to family and friends.

I hated every minute of the ordeal, but I wouldn’t have missed it for the world.

16

Seventeen years ago, my mother died in our living room (in a hospital bed arranged for by Hospice). I was the only one with her. Fourteen months prior to that, she had had a heart attack, brought on by what was diagnosed as congestive heart failure. While the doctors were investigating what kind of damage the heart attack had done, they found a cancerous tumor on one of her lungs.

I have a certificate in home nursing, and, as the youngest, was the only one still living at home. So, I became her primary caregiver. In the last months of her life, she needed blood transfusions; first, weekly, then twice a week. There came a point when she was too week to sit up in the car for me to drive her to the hospital for her transfusions. She asked the doctor what would happen if she stopped getting them. He explained that her heart would work harder and harder to distribute the blood she had, and eventually she would go into heart failure. My mom said “Okay, let’s go with that”. Two weeks later, she called me into the living room and said “I can’t breathe” I said “That’s okay, mom”, and held her hand. My father watched us from the kitchen. It only took a few minutes, and she was gone.

An interesting aside: my father (now also dead) was a recovering alcoholic, sober 13 years at the time of my mother’s death. My sister always said “When mom dies, dad will start drinking again, because he’ll have nothing to stay sober for”. I said “No. Too many times I’ve heard him say there’s nothing so bad a drink won’t make it worse”. When my mom died, dad called my hubby into the kitchen and pointed to a part bottle of whiskey under the microwave cart and said “Is that all the booze you have?” Hubby said yes. Dad pulled out his wallet, took out a twenty, and said “You’d better go get some more; there are some people coming who might need a drink”. As I recall, I had a pretty strong one myself, that afternoon. My father lived for another 13 years, sober for all of them.