Caring for the dying and rationalization

[Harriet Vane]

Just a vent here . . .

 

My grandmother is sick and dying. She has advanced Alzheimer's and spends every minute of every day confused and wracked with anxiety. Her kidney function is not great. She has arthritis throughout her body and is in pain constantly.

 

There are those who will not visit her, not even now that she is dying, because they say she would want them to remember her "as she was." They say she wouldn't want them to be there with her.

 

This is disgusting. Yes, it's true that she would like to be remembered at her best. Don't we all? BUT, when someone is anxious, confused, and in pain, what is wanted is someone who loves them to soothe their fear, hold their hand, and ease their passage.

 

I have not shared these thoughts with those who prefer not to visit the dying. I didn't share those thoughts when another family member suffered for seven years and didn't share those thoughts when that family member lingered, panting and in pain, before finally dying. I will continue to keep my peace, but I am so very, very sad that none of these sane, healthy adults can take time from their life to comfort a mother, a sister, a grandmother, a dear one as she lays dying.

[Mama Geek]

Strider, :grouphug: and prayers to you.

 

There are many people who don't want to handle dealing with the sick an dying. I see this in some of my family. They either ignore it or try their best to not deal with it. I have only seen a time or 2 where they had no choice because of it being close family.

 

For me it is hard to understand. I have lost several people close to me and have been in the room when they breathed their last. It isn't easy, but in my heart it is what I know is the best thing.

[butterflymommy]

:grouphug:

 

My mom has specifically instructed me that if she ever develops dementia, she does not want her grandchildren to have any contact with her.

[maddykate]

I understand exactly how you feel and share your pain. I witnessed this when my own mother and sister were in the last stages of cancer and during their deaths. The only explanation I can see is that people are selfish and want the easy way out. It is so very hard to sit in the room with someone while they gasp for their last breath and rattle so loud that the house almost shakes. Or to wipe someone's mouth when when they are having a seizure. It is painful and they don't want to face it. Thank God that there are those of us who can do it so these loved ones can have someone to hold their hand. I believe there will be a special place in Heaven for those who help the dying. :grouphug:

[Kim in Appalachia]

It's their own fear they can't face. That and they are selfish.

 

I do think it's a problem in our society, because we are all so seperated. Kids are locked away in school, parents at work, and the elderly or sick in nursing homes or hospitals. We assume that everything requires a specialist and that is who should deal with everything. We should not have to touch/do anything that we find unpleasant or difficult. OK end of my little rant.

 

:grouphug: It's hard to be the only person there for those you love as they suffer.

[DusksAngel]

My grandmother also has Alzheimer's, my mother and I are here primary care givers. Several of her other children have little to no contact with her, while others make sure to stop by often. She knows who visits her, she may not remember them actually being here, but she somehow knows who comes and who doesn't.

 

:grouphug: I understand all too well. I will always know that I did the best I could and helped her when she needed me. Her biggest fears are going to a nursing home and dying alone and I am doing everything I am able to do to keep her from either one.

[Maverick_Mom]

 

There are those who will not visit her, not even now that she is dying, because they say she would want them to remember her "as she was." They say she wouldn't want them to be there with her.

 

 

I've heard that reasoning, too. To me, it implies that the person who's ill is unacceptable in her altered form -- that the only "her" that had worth was the "her" from before, and therefore it's okay to abandon her because it's not really "her." But she didn't *choose* to become ill and to change. And in her soul she is still the same person.

 

And you know, when you think about it, she's not the only one who's changed. Those people who paid attention to her but now won't see her -- I'd say they've "changed," too. So much for unconditional love.

 

We put noble-sounding spins on things to avoid having to deal with difficult emotions.

[Farrar]

FWIW, I truly don't think she is feeling the hurt of the fact some family members distance themselves. You may be the one feeling the hurt of their lack of support, but she probably does not know. That's the nature of the disease. In the beginning they know. Towards the end, they really don't.

 

I think people don't know how to deal. It's very painful.

 

:iagree: I don't want to excuse it exactly... but I also think, as long as she's being well-cared for by professionals, there's only so much family can do when a loved one is essentially not home anymore and doesn't know their family. I agree that it's clearly better to visit, but I think the biggest obligation in a situation like that is to support any family who actually are doing any part of the work of caregiving or supervising the care with love, meals, errand running, and that sort of thing. And to support each other in beginning the grieving process.

[nova147]

:grouphug: I'm so sorry your family members are not supportive.

 

It, however, brings up a question for me. My paternal grandmother also has Alzheimer's. I used to visit her whenever I visited my parents, who live 6 hours away. About 2 years ago, my father flat out told me not to go see her again. He continues to visit her weekly, though she no longer recognizes anyone and often does not wake when he visits. I feel guilty about not going. But I would also feel guilty defying my father.

 

I think I'm just rationalizing too. Maybe I'll go see her in June.

[Denisemomof4]

That is so sad.

 

My mother would have died from embarrassment had she known what my kids would witness in her as dementia ravaged her brain. She would have felt even worse had we all abandoned her.

 

I think your relatives are selfish and doing what's most appealing and comfortable for themselves.

[speedmom4]

My father passed away Sunday night. He had a massive stroke and my mom and I were by his side for the 3.5 days he lived. It was excruciating watching his pain and anxiety. But I am so thankful that we stayed by his side. We were his advocates. We whispered in his ear, held his hand, and pushed his morphine pump. It was so hard watching him die but he took care of me when I was little and now it was my turn to be there for him.

 

Blessings,

Elise in NC

[LaxMom]

I helped care for my grandmother in her last weeks of life and had a similar family experience to what you describe.

 

The only insight I can offer - gleaned from talking with the various hospice staff that would come to check in on her and us - is that everyone handles dying and death differently. Frustrating as it is for those of us who step in, we need to respect that.

 

I do think it's unfortunate how our culture removes us from the stuff of life and hands everything off to professionals. We've created a culture of fear surrounding birth, death, infirmity... The nurse who came to do the death paperwork (sorry, I'm scraping for vocabulary for some reason this afternoon) was shocked to find we'd removed the catheter, bathed my grandmother in rosewater, changed her nightgown, and brushed her hair. She said she usually finds the whole household outside, where they stay until the body is removed. The whole thing makes me sad.

[LizzyBee]

My father passed away Sunday night. He had a massive stroke and my mom and I were by his side for the 3.5 days he lived. It was excruciating watching his pain and anxiety. But I am so thankful that we stayed by his side. We were his advocates. We whispered in his ear, held his hand, and pushed his morphine pump. It was so hard watching him die but he took care of me when I was little and now it was my turn to be there for him.

 

Blessings,

Elise in NC

 

:grouphug: I'm so sorry for your loss. I spent my father's last 24 hours with him, and it was so hard watching him struggle for every breath; but at the same time, it was an honor for me to have that time with him.

[LizzyBee]

Just a vent here . . .

 

My grandmother is sick and dying. She has advanced Alzheimer's and spends every minute of every day confused and wracked with anxiety. Her kidney function is not great. She has arthritis throughout her body and is in pain constantly.

 

There are those who will not visit her, not even now that she is dying, because they say she would want them to remember her "as she was." They say she wouldn't want them to be there with her.

 

This is disgusting. Yes, it's true that she would like to be remembered at her best. Don't we all? BUT, when someone is anxious, confused, and in pain, what is wanted is someone who loves them to soothe their fear, hold their hand, and ease their passage.

 

I have not shared these thoughts with those who prefer not to visit the dying. I didn't share those thoughts when another family member suffered for seven years and didn't share those thoughts when that family member lingered, panting and in pain, before finally dying. I will continue to keep my peace, but I am so very, very sad that none of these sane, healthy adults can take time from their life to comfort a mother, a sister, a grandmother, a dear one as she lays dying.

 

I understand your frustration. My Mom was so upset with my Dad's brother because he wouldn't come and visit my Dad for the last year of his life. My Dad also had alzheimer's.

[Harriet Vane]

FWIW, I truly don't think she is feeling the hurt of the fact some family members distance themselves. You may be the one feeling the hurt of their lack of support, but she probably does not know. That's the nature of the disease. In the beginning they know. Towards the end, they really don't.

 

I think people don't know how to deal. It's very painful.

 

She doesn't remember who specifically has visited or not. There are only two of us who visit at all. She does definitely know that she is alone, and she is most definitely responsive to my singing to her and holding her hand. I wish the others would spend some hours holding her hand as well.

[Harriet Vane]

My father passed away Sunday night. He had a massive stroke and my mom and I were by his side for the 3.5 days he lived. It was excruciating watching his pain and anxiety. But I am so thankful that we stayed by his side. We were his advocates. We whispered in his ear, held his hand, and pushed his morphine pump. It was so hard watching him die but he took care of me when I was little and now it was my turn to be there for him.

 

Blessings,

Elise in NC

 

God bless you for your kindness. I'm so sorry for the loss of your father.:grouphug:

[Harriet Vane]

:grouphug:

 

My mom has specifically instructed me that if she ever develops dementia, she does not want her grandchildren to have any contact with her.

 

I certainly understand not wanting children there in the room. I don't understand why grown-ups cannot sit with her as she suffers.

[Harriet Vane]

I've heard that reasoning, too. To me, it implies that the person who's ill is unacceptable in her altered form -- that the only "her" that had worth was the "her" from before, and therefore it's okay to abandon her because it's not really "her." But she didn't *choose* to become ill and to change. And in her soul she is still the same person.

 

And you know, when you think about it, she's not the only one who's changed. Those people who paid attention to her but now won't see her -- I'd say they've "changed," too. So much for unconditional love.

 

We put noble-sounding spins on things to avoid having to deal with difficult emotions.

 

Well said. Thank you.

[PrincessMommy]

I do hospice visits and many of my patients have dementia. Yes, they are not themselves, but I think that there is always a little sliver of them in there somewhere.

 

For instance. I have one pt. who is in end-stage Alzheimers. She is bedridden and sleeps most of the day. She never talks. I noticed during one visit that she had a hymnal on her dresser, so I picked it up and started singing a few hymns. She IMMEDIATELY opened her eyes. This past week she opened her eyes and looked straight at me the whole time I sang. As soon as I stopped she closed her eyes. When I asked her if she wanted me to sing she said very quietly "uh huh". One week she hummed along very briefly. So, I really do think they are there - somewhere and very hidden.

 

But, this particular patient isn't in pain or anxious - I've seen that too. It can be very upsetting- even for me and I don't know them outside of this situation.

 

It's hard, but I've been taught that you have to respect people where they are. You can only gently suggest but then it's really up to them. It may not be where YOU are. I have a high tolerance dealing with end of life stuff (obviously), but I rarely go to visit my FIL who is 101 and slowly coming to the close of his life (my husband tries to go weekly). It's really not because of him, it's because his wife is so difficult. Perhaps your family members are using it as an excuse, but perhaps its more than just the illness they're avoiding. :grouphug:

[Halftime Hope]

I, too, really struggle with this, as in my family we value being there, accompanying loves ones on their journey. I married into a family that does not stay involved in the last days. I was literally the only one who was present in the last three days of my FIL's life, except for my dh who made short visits after work. (He had been very involved with his dad up until then in *every* supporting way, so please don't read it as a criticism.)

 

The rest of the family (all within, at most, a two-hour drive) visited on a Saturday when FIL was perky and coherent, sitting up and eating. On Sunday he suffered a stroke or something so he was no longer responsive. On Wednesday the hospital called in hospice, and Wednesday night he passed. No one but dh and I came to see him from Saturday on. They wanted to remember him "as he was." I was the only one who sat with him, talked to him, read and sang to him. I know he could hear me, because he would stop being agitated when I read and sang to him--not that I'm good at either one.

 

That is bad enough.

 

When they put him on hospice, one of the close family members (who hadn't been caring for him) asked about the prognosis, how long would "he last." Then they asked if hospice could increase the dosage of the palliative meds, because they "didn't know how long they could take this." My dh, bless him, said that we would allow hospice to do what they did best and to abide by the ethics that are their norm.

 

FIL passed on in the wee hours of Wednesay morning, but I was so sad that I wasn't there with him--the hospice staff had thought he would be with us another few days. I am still deeply sad that he passed alone.

[Harriet Vane]

I, too, really struggle with this, as in my family we value being there, accompanying loves ones on their journey. I married into a family that does not stay involved in the last days. I was literally the only one who was present in the last three days of my FIL's life, except for my dh who made short visits after work. (He had been very involved with his dad up until then in *every* supporting way, so please don't read it as a criticism.)

 

The rest of the family (all within, at most, a two-hour drive) visited on a Saturday when FIL was perky and coherent, sitting up and eating. On Sunday he suffered a stroke or something so he was no longer responsive. On Wednesday the hospital called in hospice, and Wednesday night he passed. No one but dh and I came to see him from Saturday on. They wanted to remember him "as he was." I was the only one who sat with him, talked to him, read and sang to him. I know he could hear me, because he would stop being agitated when I read and sang to him--not that I'm good at either one.

 

That is bad enough.

 

When they put him on hospice, one of the close family members (who hadn't been caring for him) asked about the prognosis, how long would "he last." Then they asked if hospice could increase the dosage of the palliative meds, because they "didn't know how long they could take this." My dh, bless him, said that we would allow hospice to do what they did best and to abide by the ethics that are their norm.

 

FIL passed on in the wee hours of Wednesay morning, but I was so sad that I wasn't there with him--the hospice staff had thought he would be with us another few days. I am still deeply sad that he passed alone.

 

Thank you for sharing. I appreciate it. It does help to know I am not the only one who has walked this road.

 

It was this way a year ago when another relative was dying. I sat with her for the last few days. (I had been the only person, aside from her husband, who visited. People couldn't cope with the changes her brain damage wrought in her.) Someone else who was dear to her did show up here and there for a little bit at a time. That was it.

 

I sat with my grandmother several hours today before heading back home to take care of some obligations here. I'll go again tomorrow. There is one other who stopped by briefly this morning. No one else intends to visit, and they don't think I should visit either.

 

When I got to the nursing home, she was laying in a big, padded wheelchair in the common room, panting, with tons of people and noise. She hadn't been washed either--I could tell. I asked the staff very sweetly to clean her crusty eyes and face. When I was leaving I made sure they all knew that I would be back. That's the other piece that makes me upset--in a county nursing home, they just aren't going to give as much care, especially to someone who is not being visited. If a few more of my relatives would pop in, the staff would work a little harder at keeping my grandmother clean and comfortable.

[NorthwestMom]

:grouphug:

 

Strider, I agree with you completely.

 

So many of you have posted really beautiful stories of love and care at the end of life. What great souls you have. :)

[Tammyla]

:grouphug:Strider:grouphug:...I"m sorry about your grandma. You're a blessing to her and your family.

 

I'm so, so sorry. We had a similar exp. as Valerie last year with fil. Mil, was a demanding, wailing basket-case who felt her pain was above my poor fil. She had melt-downs that were so out of control and disruptive; the staff had to suggest and then insist she leave on a number of occasions.

 

She had a power of attornery and demanded more pain meds and palliative drugs (morphine?) the removal of his iv and no bp or diabetes meds to end his life as soon as possible. She was planning his funeral while he was still awake, talking, eating and enjoying visits.

 

The drive up there was 5 hours each way, and my dh put so many of miles on the car going up and back daily. Mil didn't want my kids or the other grandchildren to see him.

 

Hospice thought he would last another week at least, and we were going up again the next morning with the kids...Unfortunately, he died alone while she was out to dinner with friends and family. When the hospital called, she didn't even want to go to the hospital to see her dh; her brother and sil insisted they were going. It still makes me sick to think about it.

 

I wanted to send a a btdt with a family member and let you know that many, many people do not handle this well... Honestly, I'll never understand her behavior and actions when fil needed her most. I've never said anything to her or dh's family about it, but prayed and cried so many tears.

 

I, too, really struggle with this, as in my family we value being there, accompanying loves ones on their journey. I married into a family that does not stay involved in the last days. I was literally the only one who was present in the last three days of my FIL's life, except for my dh who made short visits after work. (He had been very involved with his dad up until then in *every* supporting way, so please don't read it as a criticism.)

 

The rest of the family (all within, at most, a two-hour drive) visited on a Saturday when FIL was perky and coherent, sitting up and eating. On Sunday he suffered a stroke or something so he was no longer responsive. On Wednesday the hospital called in hospice, and Wednesday night he passed. No one but dh and I came to see him from Saturday on. They wanted to remember him "as he was." I was the only one who sat with him, talked to him, read and sang to him. I know he could hear me, because he would stop being agitated when I read and sang to him--not that I'm good at either one.

 

That is bad enough.

 

When they put him on hospice, one of the close family members (who hadn't been caring for him) asked about the prognosis, how long would "he last." Then they asked if hospice could increase the dosage of the palliative meds, because they "didn't know how long they could take this." My dh, bless him, said that we would allow hospice to do what they did best and to abide by the ethics that are their norm.

 

FIL passed on in the wee hours of Wednesay morning, but I was so sad that I wasn't there with him--the hospice staff had thought he would be with us another few days. I am still deeply sad that he passed alone.

Edited May 6, 2012 by Tammyla

[Impish]

I'm sorry about your Gma :grouphug:

 

My Nan had dementia.

 

My parents were informed that the end was close, as in hrs away.

 

They stayed home. And then my mom complained that they called at 5am to inform them she's passed. According to her, they could have waited til at least 7am. :glare:

 

I worked in palliative care. Ppl are freaked out by death. Always stunned me how the crazy comes out in families at that time.

[Impish]

When I got to the nursing home, she was laying in a big, padded wheelchair in the common room, panting, with tons of people and noise. She hadn't been washed either--I could tell. I asked the staff very sweetly to clean her crusty eyes and face. When I was leaving I made sure they all knew that I would be back. That's the other piece that makes me upset--in a county nursing home, they just aren't going to give as much care, especially to someone who is not being visited. If a few more of my relatives would pop in, the staff would work a little harder at keeping my grandmother clean and comfortable.

Sadly, that is true. I've never worked in a n LTC that wasn't understaffed...what the government says is ok is ridiculous. And that's when all the staff shows up. :glare:

[SonshineLearner]

Transition from here to not is sad :( But, it's also a part of life, right? Glad that you're helping your loved one :)

[OrganicAnn]

I totally agree with you. I think it is sad not to visit. My GM had dementia and some days she would recognize everyone and somedays she didn't. Because she couldn't remember, you could visit her every single day and she would wonder if people hadn't visited her for weeks. Also I don't care how good a place is, nothing replaces family. They can speak up when needed and help the staff understand what is needed.

 

My mom is now starting to get up in age and she is starting to decline, but is totally sharp. So one family member (in law) acts like she wouldn't be able to deal with seeing my mom or having her kids see her. I just sometimes feel like telling her that her kids will leave her alone in a nursing home one day, because they are learning that lesson from her. But I don't say anything.

[Little Nyssa]

:grouphug: I'm so sorry about your grandmother.

I agree with you.

But I wonder if, in addition to everying PPs have mentioned, relatives/friends may really not understand that they could be useful. They may feel helpless. And so nervous about it, that they give in to their wish just to avoid the whole situation.

I wish there were some way to say, If you were here, you really could be a great deal of help to Grandma and to those of us who are with her.

[sparrow]

:grouphug: I'm so glad you're there for your grandmother. I absolutely agree with PrincessMommy that there is always a sliver of them "in there" somewhere. I had an aunt that died of Alzheimer's and right up until the very end you could see the fleeting moments of recognition of her family. These times lasted, literally, seconds, but there was no denying that she knew who someone was during that time.

 

:grouphug:

 

My mom has specifically instructed me that if she ever develops dementia, she does not want her grandchildren to have any contact with her.

 

I find that terribly sad. My children have witnessed my mother's decline from dementia over the past few years. I have been very proud of their willingness to help her and their wishes to find ways to connect with her. My mother absolutely delights in seeing the kids. I would never hide their grandmother away from them :(.

[trailofsparks]

:grouphug:

 

Strider, I agree with you completely.

 

So many of you have posted really beautiful stories of love and care at the end of life. What great souls you have. :)

 

:iagree: This bears repeating. Generous souls!

 

Further, I find the discussion here a bit enlightening. I have been carrying some pain due to the way relatives treated my dying one. I would accept no excuse... But people are people and we are at different points in the journey. God bless you, Strider.

[Rosie_0801]

There are those who will not visit her, not even now that she is dying, because they say she would want them to remember her "as she was." They say she wouldn't want them to be there with her.

 

I heard similar stories when my father in law was dying. "We would visit, but we really hate hospitals." (That doesn't sound at all like what I think "would visit" means. :glare:)

 

I think it is cowardly and those people had better cross their fingers they have better luck when it is their turn. I mightn't think they were so bad if they contributed in some way, but when FIL was ill, it was the people who visited who also brought around dinners.

 

Remembering people "as they were" seems like a load of honk to me. We all have photos, do we not? They act as a refresher when that is needed. Adults should act like grown ups.

 

:grouphug::grouphug:

 

 

FIL passed on in the wee hours of Wednesay morning, but I was so sad that I wasn't there with him--the hospice staff had thought he would be with us another few days. I am still deeply sad that he passed alone.

 

Perhaps that was his decision. FIL waited until his womenfolk had gone home for a shower and a nap, and for me to make it in to be there for his boy. :grouphug::grouphug:

[Halftime Hope]

Thank you for sharing. I appreciate it. It does help to know I am not the only one who has walked this road.

 

It was this way a year ago when another relative was dying. I sat with her for the last few days. (I had been the only person, aside from her husband, who visited. People couldn't cope with the changes her brain damage wrought in her.) Someone else who was dear to her did show up here and there for a little bit at a time. That was it.

 

I sat with my grandmother several hours today before heading back home to take care of some obligations here. I'll go again tomorrow. There is one other who stopped by briefly this morning. No one else intends to visit, and they don't think I should visit either.

 

When I got to the nursing home, she was laying in a big, padded wheelchair in the common room, panting, with tons of people and noise. She hadn't been washed either--I could tell. I asked the staff very sweetly to clean her crusty eyes and face. When I was leaving I made sure they all knew that I would be back. That's the other piece that makes me upset--in a county nursing home, they just aren't going to give as much care, especially to someone who is not being visited. If a few more of my relatives would pop in, the staff would work a little harder at keeping my grandmother clean and comfortable.

 

{{Strider}} Wishing you all the strength and peace you will need for this path that is before you. She will register, on some level, that she is being loved and cared for, and that is what counts.

 

I admire your tenderness and loving-kindness. May you be blessed today as well.

[Maverick_Mom]

I had to come face to face with my own discomfort with death last year. Dh was living 1000+ miles away and working in a new job, and the kids and I stayed behind for a few months before we moved. During that time, FIL was diagnosed with stage-4 cancer. I was not close to him, and dh had always been the one to coordinate visits between his parents and our kids. But dh was a thousand miles away, FIL was dying, and I had to get out of my comfort zone in a hurry. I can honestly say it was one of the most difficult things I have ever done. I didn't want to be there under the best of circumstances, and neither my kids nor I had any real up-close experience with death other than the death of a pet. But it was all there, staring me in the face and challenging me to decide what I was going to do. I'm embarrassed to say that it wasn't concern for my FIL that motivated me -- it was concern for dh and for my kids. I knew that it was tearing dh up inside that he couldn't be there for his dad; but I *could* be there in his place and share his love with his dad. I also knew that shielding my kids from their grandfather at this time would actually make it harder for them to deal with his death and say goodbye; I owed it to them to let them spend time with him. Not exactly the happiest kind of educational experience, but a necessary one. So we visited and brought gifts and talked and laughed and listened, and somehow cancer got pushed into the background -- the kids and I saw that FIL was sick but he was still their grandfather. Our visits seemed to bring him a great deal of joy -- when we walked into the room, his face lit up more than I'd ever seen it light up before. Our being there made a difference for him, and it made a difference for us, too. And what did it cost us? Facing our fears and discomforts. I know I would have terrible regrets and guilt now if we hadn't spent that time with him.

[sparrow]

I heard similar stories when my father in law was dying. "We would visit, but we really hate hospitals." (That doesn't sound at all like what I think "would visit" means. :glare:)

 

I think it is cowardly and those people had better cross their fingers they have better luck when it is their turn. I mightn't think they were so bad if they contributed in some way, but when FIL was ill, it was the people who visited who also brought around dinners.

 

Remembering people "as they were" seems like a load of honk to me. We all have photos, do we not? They act as a refresher when that is needed. Adults should act like grown ups.

 

:grouphug::grouphug:

 

 

:iagree:We have a friend that I will never feel the same way about because he did not attend another friend's visitation or funeral. He drove several hours, from another state, to hang with the old gang remembering our dear friend. That was the "fun" part. The not-so-fun part, but the most necessary, was to be supportive of his 39 year old widow and her two young sons. I thought he had to drive home, but another friend let it slip that they'd had breakfast on the morning of the funeral. The shock must have immediately appeared on my face, because the person started back pedaling and said that our other friend "just couldn't handle it" and "doesn't like funerals" :001_huh:. Does anyone like funerals?! Does anyone like seeing a loved one in a hospital?

 

I don't feel that people need to stay for hours on end, if they're very uncomfortable, but to come in and hold a hand, whisper "I love you", or give a kiss on the forehead is such a small thing and it gives comfort. A life lived deserves recognition.

 

I had to come face to face with my own discomfort with death last year. Dh was living 1000+ miles away and working in a new job, and the kids and I stayed behind for a few months before we moved. During that time, FIL was diagnosed with stage-4 cancer. I was not close to him, and dh had always been the one to coordinate visits between his parents and our kids. But dh was a thousand miles away, FIL was dying, and I had to get out of my comfort zone in a hurry. I can honestly say it was one of the most difficult things I have ever done. I didn't want to be there under the best of circumstances, and neither my kids nor I had any real up-close experience with death other than the death of a pet. But it was all there, staring me in the face and challenging me to decide what I was going to do. I'm embarrassed to say that it wasn't concern for my FIL that motivated me -- it was concern for dh and for my kids. I knew that it was tearing dh up inside that he couldn't be there for his dad; but I *could* be there in his place and share his love with his dad. I also knew that shielding my kids from their grandfather at this time would actually make it harder for them to deal with his death and say goodbye; I owed it to them to let them spend time with him. Not exactly the happiest kind of educational experience, but a necessary one. So we visited and brought gifts and talked and laughed and listened, and somehow cancer got pushed into the background -- the kids and I saw that FIL was sick but he was still their grandfather. Our visits seemed to bring him a great deal of joy -- when we walked into the room, his face lit up more than I'd ever seen it light up before. Our being there made a difference for him, and it made a difference for us, too. And what did it cost us? Facing our fears and discomforts. I know I would have terrible regrets and guilt now if we hadn't spent that time with him.

 

:grouphug: Your post brought tears to my eyes. What important memories for your family.

[sparrow]

I read and watched this story, about a family caring for their dying son:

 

http://www.cnn.com/interactive/2012/05/us/gift.of.charles/?hpt=hp_c1

 

...and couldn't help thinking of this thread.

 

:grouphug:

 

ETA: Tissues are necessary for this piece.

Edited May 6, 2012 by sparrow

[Jpoy85]

I admit when my grandma (she was more like a mom to me than grandma) was in Hospice, i did not go see her as much. I did not like the enviroment, I did not like who she was. She wasnt even there. It wasnt her. I do wish the one night I went and she was very very out of it, that i had laid in bed with her like i wanted. They had a bed alarm on because she was trying to get up and walk (she couldnt) and I should of asked them to turn it off so i could lay with her.

 

ETA: When I say it wasnt her, I mean she was doped up on Morphine and had no idea where she was, who she was or who we were. She thought she was seeing my great grandma who had passed away and my grandpa who passed away, she would think she was holding things and she wasnt....then she was so groggy she didnt know up from down. It did make me uncomfortable to go. I did go, but not as much as I could/should have.

Edited May 6, 2012 by Jpoy85

[JadeOrchidSong]

I had to come face to face with my own discomfort with death last year. Dh was living 1000+ miles away and working in a new job, and the kids and I stayed behind for a few months before we moved. During that time, FIL was diagnosed with stage-4 cancer. I was not close to him, and dh had always been the one to coordinate visits between his parents and our kids. But dh was a thousand miles away, FIL was dying, and I had to get out of my comfort zone in a hurry. I can honestly say it was one of the most difficult things I have ever done. I didn't want to be there under the best of circumstances, and neither my kids nor I had any real up-close experience with death other than the death of a pet. But it was all there, staring me in the face and challenging me to decide what I was going to do. I'm embarrassed to say that it wasn't concern for my FIL that motivated me -- it was concern for dh and for my kids. I knew that it was tearing dh up inside that he couldn't be there for his dad; but I *could* be there in his place and share his love with his dad. I also knew that shielding my kids from their grandfather at this time would actually make it harder for them to deal with his death and say goodbye; I owed it to them to let them spend time with him. Not exactly the happiest kind of educational experience, but a necessary one. So we visited and brought gifts and talked and laughed and listened, and somehow cancer got pushed into the background -- the kids and I saw that FIL was sick but he was still their grandfather. Our visits seemed to bring him a great deal of joy -- when we walked into the room, his face lit up more than I'd ever seen it light up before. Our being there made a difference for him, and it made a difference for us, too. And what did it cost us? Facing our fears and discomforts. I know I would have terrible regrets and guilt now if we hadn't spent that time with him.

 

You have done it so well! I will remember your story and face my own discomfort of death one day.

I was 24 hours away by train from my sister and I didn't know she died and was cremated until a week later. I only saw my family once a year. I still feel the pain now not being there for her.

Now that my parents in law are aging, we see them once a week. When they need more care, I will visit more often. I will bring my boys, too, because they are very close to their grandparents.

[kalanamak]

:grouphug:

 

My mom has specifically instructed me that if she ever develops dementia, she does not want her grandchildren to have any contact with her.

 

My brother didn't want his kids seeing him when he was dying. They were all minors.

 

I think my mother was very happy it was just two trusted grown children with her. She became reclusive as she got to be very old. She was always such a physically strong and active person, she kept her frail self very private. Luckily, she was pretty robust until the last few months.

 

However, in this situation it sounds like cowardly people. I find avoiding the sight of aging just makes people more afraid. Plus, if you aren't willing to do it for someone, they you deserve to die alone, too. However, I do admit there are very weak people in the world, and I don't really wish anyone to die alone.

 

I remember going to visit an old patient of mine. She was 101, and had been very alert up to 99. She was finally in a nursing home, and had had a stroke and died in a couple of days, but I stopped by, very pregnant, with hubby in tow. She was always a flirt. She didn't acknowledge me, and I wondered how much she understood because she couldn't talk. When she saw my handsome man, she winked at him, clear as a bell. I knew she understood her surroundings and we stayed a good long time.

[Rosie_0801]

Does anyone like funerals?!

 

Well, actually...

 

I don't as a general rule, but I was quite ill the day before my FIL's and was petrified I wouldn't be able to go. Thankfully I was ok, and I'm so glad because it was a fabulous funeral! Naturally they left out the bad bits, like how he should have been nicer to his DIL :p but it was the first funeral I'd been to where the good stuff didn't need to be exaggerated because he really did a heck of a lot of good stuff. It was fun to see the side of him he shared with everyone else. I knew it was there, but it wasn't stuff he showed me. It was a bit like getting the last word in an argument. :D (We had a strange relationship; a sort of undiscussed agreement not to get along. Really, I think we had to be kindred spirits to be in such disharmony without hurting each other or ourselves.:rolleyes: )

 

Rosie

[kalanamak]

BTW, in pain and racked with anxiety: she needs better meds, perhaps a patch.

[PrincessMommy]

I had to come face to face with my own discomfort with death last year. Dh was living 1000+ miles away and working in a new job, and the kids and I stayed behind for a few months before we moved. During that time, FIL was diagnosed with stage-4 cancer. I was not close to him, and dh had always been the one to coordinate visits between his parents and our kids. But dh was a thousand miles away, FIL was dying, and I had to get out of my comfort zone in a hurry. I can honestly say it was one of the most difficult things I have ever done. I didn't want to be there under the best of circumstances, and neither my kids nor I had any real up-close experience with death other than the death of a pet. But it was all there, staring me in the face and challenging me to decide what I was going to do. I'm embarrassed to say that it wasn't concern for my FIL that motivated me -- it was concern for dh and for my kids. I knew that it was tearing dh up inside that he couldn't be there for his dad; but I *could* be there in his place and share his love with his dad. I also knew that shielding my kids from their grandfather at this time would actually make it harder for them to deal with his death and say goodbye; I owed it to them to let them spend time with him. Not exactly the happiest kind of educational experience, but a necessary one. So we visited and brought gifts and talked and laughed and listened, and somehow cancer got pushed into the background -- the kids and I saw that FIL was sick but he was still their grandfather. Our visits seemed to bring him a great deal of joy -- when we walked into the room, his face lit up more than I'd ever seen it light up before. Our being there made a difference for him, and it made a difference for us, too. And what did it cost us? Facing our fears and discomforts. I know I would have terrible regrets and guilt now if we hadn't spent that time with him.

 

God bless you for doing such a difficult and "out of your comfort zone" thing. I especially agree with what I've bolded.

[PrincessMommy]

BTW, in pain and racked with anxiety: she needs better meds, perhaps a patch.

 

:iagree: But I'm not a medical professional so I was afraid to speak up.

[Lizzie in Ma]

Just a vent here . . .

 

My grandmother is sick and dying. She has advanced Alzheimer's and spends every minute of every day confused and wracked with anxiety. Her kidney function is not great. She has arthritis throughout her body and is in pain constantly.

 

There are those who will not visit her, not even now that she is dying, because they say she would want them to remember her "as she was." They say she wouldn't want them to be there with her.

 

This is disgusting. Yes, it's true that she would like to be remembered at her best. Don't we all? BUT, when someone is anxious, confused, and in pain, what is wanted is someone who loves them to soothe their fear, hold their hand, and ease their passage.

 

I have not shared these thoughts with those who prefer not to visit the dying. I didn't share those thoughts when another family member suffered for seven years and didn't share those thoughts when that family member lingered, panting and in pain, before finally dying. I will continue to keep my peace, but I am so very, very sad that none of these sane, healthy adults can take time from their life to comfort a mother, a sister, a grandmother, a dear one as she lays dying.

 

:grouphug::grouphug:

I am so sorry. Having just spent two nights with my Mom post surgery at the hospital, I can't imagine having left her alone. She was so disoriented and fuzzy from pain and anesthesia. Only a small taste of what you are going through but I shudder to think how she would have felt if she'd been alone.