we decided to put my mom on Hospice today

[Denisemomof4]

has anyone ever had to do this before? It's something I've wanted for her for quite some time now. I'm so sad for her having to go to the hospital so often and being poked and prodded. It absolutely BREAKS MY HEART.

 

But now I'm SO ambivalent about it all.

 

My sister has the DPOA and SHE is the one who has finally made this decision, knowing that everyone else has wanted it for a few months now. I've been telling her how it's taking 2 hours, sometimes 3 to get breakfast in her. Sometimes we have to do this for all three meals. If she won't open her mouth we don't force. But - she really doesnt' want to drink much anymore. I've been having to give her fluids through a syringe because she gets frequent UTI's and I try to keep them away. Wednesday something REALLY hit me. My mother, upon her diagnosis of Parkinsons and dementia, signed DNR DNI orders. She insisted on no breathing/feeding tubes. I realized that I HAD BECOME HER FEEDING TUBE, and have decided that I'm letting her call the shots from here on out. She can drink as much or as little as she wants, and I think it's only a matter of time before she's going to get a UTI. Hospice will mildly treat a UTI and we're hoping a catheter will keep them away for a little longer. How can we choose NOT to treat something like that? That's what I'm struggling with. But I think the treatment is ultimately going to make her die a more painful death. The antibiotics cause diarrhea, and she has ulcerative colitis. By the time she's finally done with them, her poor bum is raw. Then I clear that up. Then we repeat again a couple weeks later.

 

We're now on our second bout of pressure sores in 4 months. She's been on antibiotics 5 times in four months. She's been hospitalized twice and evaluated in the ER three times - all in four months. Three UTI in four months. So we've decided it's not fair to keep putting her through this.

 

And then I take away one of her meds, and yesterday she just CAME ALIVE. She's spent weeks sleep, sleep, sleeping and now she's talking, laughing, happy. But I know eventually another infection will come........ it's just a horrible, horrible cycle.

 

I question whether or not I'm strong enough for this, and yet as a family we have ALL decided together that we absolutely want to keep her here until the end. I'm most concerned about my 9 yod who's SO close to her.

 

Having to look into her face sometimes causes the most severe nausea in me. Are we playing God? Is this really right?

 

The doctor's have been suggesting this for a long time now. But I'm really struggling.

 

Has anyone else been through this before?

 

If you could, please pray for her. Her name is Lorraine.

[4kiddies]

:grouphug::grouphug::grouphug:I'm so sorry. I haven't had to do this and I pray I never do but I think that you need to do what you think SHE would want and what YOU would want if you were in her shoes. :grouphug::grouphug::grouphug:

[Tap]

So sorry you are having to deal with this. It is so hard to see someone trickle away day after day. We have been through this with several people in our family and while the illness is very hard on the patient. The care and emotional strain on the family sometimes seams 10 fold what the patient is going through.

 

 

If she is still awake and alert, can she talk about her wishes? The refusal of the feeding tube seems to be a choice that is agonizing on all of you. Will she reconsider that, if even just for fluids, but maintain the DNR? Does she remember any pain while she was 'asleep'? If not, let that at least be a comfort to you, that while her rash appears to be uncomfortable after the antibiotics, she may not actually feel it the same way we do.

 

I hope you have some great nurses, the hospice nurses I have worked with have been such compassionate, wise, people. They are often full on knowledge, and are a wonderful source of support. I wish your family the best and a peaceful transition for your mom.

 

 

~Tap

[ThatCyndiGirl]

I'm so sorry that you are going through this! We walked down a similar path with my brother a year and a half ago. Unfortunately, he died before he could even get to hospice. He was only 47 and it was horrible to watch. I was there the night he died.

 

I have a separate blog for the experience. If you want to read it (and I recognize that you may not), it's here:

 

http://www.letterstoabrotherdying.blogspot.com

[jonesloonybin]

We had a hospice nurse for my mother towards the end. She had a brain tumor. The nurses were very nice and really help us a lot. They had tips and such that we did not even think of. Plus, it helps take away that worry that I might miss something.

 

I do have to say that after my mother passed away I struggled with some things they did but as time has gone on, I understand better why they did certain things.

[battlemaiden]

Denise,

 

I'm so sorry. No advice. Just thinking of you, praying for you and your family, and hoping that the path becomes clear and true.

 

:grouphug:

 

Jo

[Karen sn]

Let me tell you something and I am a hospice nurse.

She will actually get better care under hospice and live longer.

Really - the stats are out there - do your research.

 

I have been a part of healing the most awful wounds and sores.

More one on one care in a hospice situation and we can really do our jobs as nurses.

She will live better.

 

 

When she does die - it will be peaceful and as painless as possible.

 

I LOVE hospice.

Especially after witnessing the death of a close family friend...which even my dd later recalled as, "She suffered." This friend died in a hospital in pain - she was on a patient controlled pump and WE had to pump it. She was ate up with cancer and literally on death's door after many years of fighting it. It was a good perspective from my daughter on this death. We were discussing my job as a nurse who helps people die and *why* I do what I do.

 

Dd had been to my place of work - a hospice home where we cared for many people. Lots of old ladies. My dd was a welcome part of the dining room conversation. It was sometimes more like a nursing home. But sometimes our old ladies died and then always our really sick and ready folks did. But when they did pass, it was quiet and calm and as serene as possible in most every case.

 

Don't forget - patients in hospice care have a longer life expectancy and greater quality of life.

You did the right thing.

 

And no....you are not playing God.

Edited June 5, 2009 by Karen sn

[6packofun]

Denise! I am right there, right now! We've been caring for dh's grandmother with Alzheimer's (and lung cancer) in our home since November. She's been on hospice for 2 months now. Just Sunday night/Monday morning she had a stroke and is unable to eat or drink without a real danger of aspiration. So we stopped. We have continuous nursing care now, nurses trading off in 12-hour shifts to take the caregiving and medicating burden off of us so that we can just BE with her...she keeps holding on and slowly fading away and it's very difficult to watch. But we want to be right here for her when she passes into eternity.

 

Hospice has been really great. There comes a point where comfort care is the most compassionate and loving thing that you can do. Have you ever read "Hard Choices for Loving People?" Here is the site where you can read about end of life care and how the choice to discontinue food and water (among other things) can prevent complications to a more gentle death. http://www.hardchoices.com/ (It's a PDF file)

 

When our loved ones are ready, they really will let us know. Dh's grandmother would eat a bowl of oatmeal every day for breakfast over the course of 30-45 minutes and then sleep almost the entire rest of the day. We couldn't rouse her enough to feed her lunch or dinner but sometimes she would take a little Ensure. Right before her stroke this week we were feeling much as you were, that her quality of life had gone and that automatically opening her mouth and swallowing was NOT nourishment and very possibly not what she even wanted. She stopped knowing my dh, her grandson, weeks ago. She is mostly unresponsive now and it's been a difficult 5 days. We don't know when it will end and she's being kept comfortable with medication. (She has a bed sore, too, and her skin was so paper thin that just holding her by the hand to help her sit up caused it to tear. ) She shows no distress at all and seems very peaceful now as her body winds down like a clock which will not be rewound to continue.

 

I think you are right about treating the UTI as hospice would. THAT is comfort/palliative care, IMO. Giving oxygen (not through a ventilator) is comfort care and we do that. Pain and symptom management is comfort care as well.

 

It IS a very difficult decision. We are trying to honor dh's grandmother's DNR/comfort care only request from years ago and believe that hospice is helping us to give her a peaceful, dignified death. It's hard on OUR end to see, but we feel like this is our last gift to her. I'm sorry that you're going through all of these tough choices. These diseases force us to really contemplate some of the terribly hard issues!

 

Peace be with you all during this time.

[Karen sn]

Denise! I am right there, right now! We've been caring for dh's grandmother with Alzheimer's (and lung cancer) in our home since November. She's been on hospice for 2 months now. Just Sunday night/Monday morning she had a stroke and is unable to eat or drink without a real danger of aspiration. So we stopped. We have continuous nursing care now, nurses trading off in 12-hour shifts to take the caregiving and medicating burden off of us so that we can just BE with her...she keeps holding on and slowly fading away and it's very difficult to watch. But we want to be right here for her when she passes into eternity.

 

Hospice has been really great. There comes a point where comfort care is the most compassionate and loving thing that you can do. Have you ever read "Hard Choices for Loving People?" Here is the site where you can read about end of life care and how the choice to discontinue food and water (among other things) can prevent complications to a more gentle death. http://www.hardchoices.com/ (It's a PDF file)

 

When our loved ones are ready, they really will let us know. Dh's grandmother would eat a bowl of oatmeal every day for breakfast over the course of 30-45 minutes and then sleep almost the entire rest of the day. We couldn't rouse her enough to feed her lunch or dinner but sometimes she would take a little Ensure. Right before her stroke this week we were feeling much as you were, that her quality of life had gone and that automatically opening her mouth and swallowing was NOT nourishment and very possibly not what she even wanted. She stopped knowing my dh, her grandson, weeks ago. She is mostly unresponsive now and it's been a difficult 5 days. We don't know when it will end and she's being kept comfortable with medication. (She has a bed sore, too, and her skin was so paper thin that just holding her by the hand to help her sit up caused it to tear. ) She shows no distress at all and seems very peaceful now as her body winds down like a clock which will not be rewound to continue.

 

I think you are right about treating the UTI as hospice would. THAT is comfort/palliative care, IMO. Giving oxygen (not through a ventilator) is comfort care and we do that. Pain and symptom management is comfort care as well.

 

It IS a very difficult decision. We are trying to honor dh's grandmother's DNR/comfort care only request from years ago and believe that hospice is helping us to give her a peaceful, dignified death. It's hard on OUR end to see, but we feel like this is our last gift to her. I'm sorry that you're going through all of these tough choices. These diseases force us to really contemplate some of the terribly hard issues!

 

Peace be with you all during this time.

 

You literally brought tears to my eyes with your story.

That is beautiful.

[KingM]

This sounds rough. I'm sorry you're having to go through this.

 

I have been through a somewhat similar experience.

 

I lived with my elderly grandparents for the last six years of my grandfather's life, so that he could stay at home and not live in a nursing home. He grew increasingly frail, both physically and mentally, and since he had no colon, due to colon cancer, he needed help getting up for regular bathroom visits at night.

 

We went through a horrible cycle about every six to eight months. My grandfather would get sicker and weaker and more confused, and would have an emergency requiring hospitalization. After a couple of weeks at the hospital, he would be well enough to go to the nursing home, where he would spend a few more weeks. He would return from the nursing home on only two or three pills, in a fair amount of pain, but physically stronger and much, much more alert. But little by little, his regular doctor would pile on the pills and he would slip downhill. Another medical emergency would occur.

 

It isn't easy, and caring for a sick, elderly relative is exhausting, to say the least. But it has it's rewards, too, and I'm grateful I was able to help my grandparents in the last years of their lives.

[Heather in Neverland]

:grouphug::grouphug::grouphug:

[Cindy in NY]

We had a wonderful experience with Hospice when my mother-in-law was dying. I was ambivalent about it also but it was the best thing we could have done. They were so good at dealing with end-stage patients, they gave her 4 months of life when she felt better than she had in months.

 

She died here, in our front bedroom. My three young sons were here and they handled it so well. Even my 10 year old who was Gammi's favorite boy. It was a gift to them. Death is as natural to them as birth and I will forever be grateful to the Hospice nurses who encouraged me through it.

 

I don't think you will regret the decision to use Hospice. I will pray for you and your mother.

[Rita]

:grouphug:

 

We hospiced cared for my mother during her end stage cancer. She lived out the last 3 months of her life in our front room. My boys were 10 and 12. It was sad, and hard, and funny, and I wouldn't trade that time with her for anything.

 

Praying for your family as you walk this path.

 

Rita

[kalanamak]

I realized that I HAD BECOME HER FEEDING TUBE,.

 

This is extremely insightful, and many never figure that out.

 

Hospice is wonderful. It lets you concentrate on the business of living until you die.

 

:grouphug:

[G5052]

My Dad had spent two months in hospitals and nursing homes following a bad case of pneumonia, and everything began failing -- his heart, his lungs, and his ability to make red blood cells. The doctor had already declared Mom (who has dementia) incapible of making his medical decisions and most of the rest of family was in utter denial. So I played the bad guy, and talked with the doctors on the phone and then faxed his Living Will. Thankfully the primary took the Living Will to him and was able to discuss all the issues with no relatives present, and he signed the paperwork himself. My family was furious at me of course, but I knew his wishes and he was quite capable of making the decision himself at that point.

 

He stayed in the nursing home because the doctor didn't feel that the relatives close by could adequately take care of him, and hospice saw him three times a week and was on the phone daily with the nursing home. He died two weeks later of a stroke and was lucid until two days before. Truly it was the right thing at the right time.

[wildflower]

:grouphug::grouphug::grouphug::grouphug::grouphug:

prayers for you and your family

[elizabeth]

God bless and keep you both close as you travel this road together. You are a wonderful person to have as a caregiver and a noble soul to follow her wishes. I have been through this three times and must say that in my limited experience there was a point at which eating made my loved ones uncomfortable and the hospice nurses helped me understand what was happening. They are a special kind of person and I must say that it was an honor to be present watching these people practice the healing arts. I am sorry for your grief and your struggle . Thank you for sharing your difficulty and for allowing us to send prayers and caring thoughts your way.

[EKS]

I am so so sorry.

 

But I have to say that hospice was a godsend for the people I've known who've needed it (and their families).

[stephanie78]

In 2005 we made the decision to place my grandfather in a hospice unit at a hospital. The nurses were wonderful, they worked as hard as possible to make my grandfather more possible, they brought in counselors to talk to the family, they helped my children make clay imprints of my grandfather's fingerprints for keepsakes, and offered grief counseling for the whole family. During one of the many long nights when I was at the hospital by myself one of the counselors spent two hours talking with me, she was such a bright point in a horrible situation, as we had just lost my uncle a few months earlier. It was hard dealing with so much death in such a short period of time.

 

I am sorry that you are going through such a rough time and my heart goes out to your family.

[Impish]

I've worked in palliative care, in a homecare setting, and was looking at moving to working at a hospice when I was injured. Hospice workers are incredible. It really takes a special touch to work in a hospice. I've been honoured to work in that field, and I can tell you that your mom will receive excellent and care full care if what I've been a part of is the norm, which it seems to be, having witnessed the same thing different places I've been.

 

Its not an easy decision, but from what you've shared before, and now, very much the right decision.

 

God bless.

:grouphug:

[jenL]

I have only heard wonderful stories from friends about hospice for their family members. I know I would definitely make the choice for it if I had to from all I've heard. I hope you will find peace with your decision. Sending you prayers and :grouphug:.

[Denisemomof4]

:grouphug::grouphug::grouphug:I'm so sorry. I haven't had to do this and I pray I never do but I think that you need to do what you think SHE would want and what YOU would want if you were in her shoes. :grouphug::grouphug::grouphug:

 

unfortunately, mom is lost to dementia and can't speak her wishes at this time, but dad died in August and before he got REAL bad he had decided to stop treating her then. I was supportive of it, but didn't realize the facility she was living in and making her SO sick. Also, before her mind got lost to dementia she told me she was sick of doctors and hospitals. That was YEARS ago.

 

I do think we know what she wants but it's so painful to think about it. We're letting her direct her food/fluid intake right now. We're doing everything to make her life as rich as possible. Tonight we took her out to dinner. We haven't done that since September.

 

Hospice gave us a booklet on what to expect, and it appears her body is in the process of shutting down now. She may have months still, but clearly she is weakening. :sad::sad:

 

I wish something would take her, that we didn't have to make these decisions. But, I do think she's tired. She definitely hates being fussed over every day.

[Denisemomof4]

Let me tell you something and I am a hospice nurse.

She will actually get better care under hospice and live longer.

Really - the stats are out there - do your research.

 

I have been a part of healing the most awful wounds and sores.

More one on one care in a hospice situation and we can really do our jobs as nurses.

She will live better.

 

 

When she does die - it will be peaceful and as painless as possible.

 

I LOVE hospice.

Especially after witnessing the death of a close family friend...which even my dd later recalled as, "She suffered." This friend died in a hospital in pain - she was on a patient controlled pump and WE had to pump it. She was ate up with cancer and literally on death's door after many years of fighting it. It was a good perspective from my daughter on this death. We were discussing my job as a nurse who helps people die and *why* I do what I do.

 

Dd had been to my place of work - a hospice home where we cared for many people. Lots of old ladies. My dd was a welcome part of the dining room conversation. It was sometimes more like a nursing home. But sometimes our old ladies died and then always our really sick and ready folks did. But when they did pass, it was quiet and calm and as serene as possible in most every case.

 

Don't forget - patients in hospice care have a longer life expectancy and greater quality of life.

You did the right thing.

 

And no....you are not playing God.

 

I believe you. My mom's doctor was of NO HELP at ALL. I was frustrated. Under Hospice it appears I'll be getting the support I've needed over the past four months. They're going to tell me what to expect, when to administer meds, etc. But you know that,. ;) I was shocked to hear that I can call for advice 24/7. I really do need the extra support, and was surprised to hear how they're going to even manage/change meds. I do believe they're going to help us!

 

Thank you for writing. I really do feel that we've made the right decision, but it's breaking my heart every time I look into her sweet little face.

[Denisemomof4]

Denise! I am right there, right now! We've been caring for dh's grandmother with Alzheimer's (and lung cancer) in our home since November. She's been on hospice for 2 months now. Just Sunday night/Monday morning she had a stroke and is unable to eat or drink without a real danger of aspiration. So we stopped. We have continuous nursing care now, nurses trading off in 12-hour shifts to take the caregiving and medicating burden off of us so that we can just BE with her...she keeps holding on and slowly fading away and it's very difficult to watch. But we want to be right here for her when she passes into eternity.

 

Hospice has been really great. There comes a point where comfort care is the most compassionate and loving thing that you can do. Have you ever read "Hard Choices for Loving People?" Here is the site where you can read about end of life care and how the choice to discontinue food and water (among other things) can prevent complications to a more gentle death. http://www.hardchoices.com/ (It's a PDF file)

 

When our loved ones are ready, they really will let us know. Dh's grandmother would eat a bowl of oatmeal every day for breakfast over the course of 30-45 minutes and then sleep almost the entire rest of the day. We couldn't rouse her enough to feed her lunch or dinner but sometimes she would take a little Ensure. Right before her stroke this week we were feeling much as you were, that her quality of life had gone and that automatically opening her mouth and swallowing was NOT nourishment and very possibly not what she even wanted. She stopped knowing my dh, her grandson, weeks ago. She is mostly unresponsive now and it's been a difficult 5 days. We don't know when it will end and she's being kept comfortable with medication. (She has a bed sore, too, and her skin was so paper thin that just holding her by the hand to help her sit up caused it to tear. ) She shows no distress at all and seems very peaceful now as her body winds down like a clock which will not be rewound to continue.

 

I think you are right about treating the UTI as hospice would. THAT is comfort/palliative care, IMO. Giving oxygen (not through a ventilator) is comfort care and we do that. Pain and symptom management is comfort care as well.

 

It IS a very difficult decision. We are trying to honor dh's grandmother's DNR/comfort care only request from years ago and believe that hospice is helping us to give her a peaceful, dignified death. It's hard on OUR end to see, but we feel like this is our last gift to her. I'm sorry that you're going through all of these tough choices. These diseases force us to really contemplate some of the terribly hard issues!

 

Peace be with you all during this time.

 

I'm so sorry for your pain, too. :grouphug::grouphug::grouphug: Can you tell me how your kids are doing and how Hospice has helped them?

 

My mom's only 68. My sister keeps feeling like we got cheated. Dad died at 67.

[Gretchen in NJ]

:grouphug::grouphug::grouphug:Many hugs and prayers for you.:grouphug::grouphug::grouphug:

[BamaTanya]

I'm praying for you and your mom and your children this morning. I'm so sorry you're having to go through this. What a difficult path! :grouphug: I pray your mom's hospice care is as thorough and supportive as can be and that you feel some of the burden lifted as you love her through this.

:grouphug::grouphug:

[6packofun]

Our situation is a little different because my children are *great-grandchildren* and for 4-5 years we watched dh's grandmother decline from a distance (she lived in WV and we're in Cleveland, OH). We'd visit a few times a year so the relationship is not as close as they would be to one of our parents. Not only that, by the time mamaw came to live with us she no longer remembered them. :( I feel like we have grieved her loss to us over a long period...they call Alzheimer's/dementia "The Long Goodbye" and that's the truth, isn't it?

 

However, hospice has a wonderful social worker who was willing to come in and talk to the kids about the dying process and how they don't have to be afraid or freaked out by her dying right here in our house. We are a Christian family and will have our pastor speak to them, too. But we pray together a lot...right now we're praying for the Lord to take her quickly.

 

Another neat service that our particular hospice offers is to make a "memory bear" (teddy bear) from any articles of clothing, blankets, etc. that have sentimental value. Mamaw has a beautiful nightgown that she's been wearing a lot and we're going to have that made into a bear. The hospice nurse has these beautiful handkerchiefs and when a patient is near the end, many times they will have a single tear in one eye. She uses the hanky to soak up that tear and gives it to the family. We're also going through a LOT of photos...it sure helps the kids to see mamaw as she was, the person God gave to us for those many years. They are so lucky to have had a relationship with their great-grandparents! We're making a collage to have out at the funeral and it helps with closure.

 

Mamaw is so close to the end. The kids were in to her room earlier this week to sit alone with her before it got to be too much---it definitely is now. She's peaceful but looks kind of scary for the little ones and I don't want them to go through that. I guess we just talk and talk and STOP talking when it's too much.

 

Hospice will have many resources to cater to what your family needs for emotional support, to whatever degree you feel you want. They have chaplains, social workers, volunteers, aids, nurses... Really wonderful. I was listening in on the baby monitor last night while the overnight nurse was there and she was SO sweet and gentle with mamaw...I slept like a baby for the first time in a week after hearing it. :)

[Harriet Vane]

:grouphug:

 

My aunt is dying of a brain tumor. She has been more like a sister to me. She's not that much older than me,and our mothers had a business together when we were growing up. We were very close as children, and are very close now. Even as I type this post, I am actually at her house babysitting her five children while her husband is at work. I do this most weekends.

 

My aunt has been brain-damaged ever since a surgery a couple years ago. She lives in a local nursing home, and I visit her every week. For a while she was fairly mobile and would phone me most days as well. Since last summer, however, she has been steadily declining. At this point her body is twisted and she is wheelchair-bound. She lives with frightening, upsetting delusions and terrible anxiety as her constant, "normal" state. A couple months ago she was put on hospice care.

 

It has been so terribly, terribly painful to walk this road with her. Every step is second-guessed. Seeing her in such pain, and trying to soothe her anxiety and speak the truth through her awful delusions is so very, very hard. I just visited her yesterday, and found myself completely broken. I see her every week but I don't think I will ever, ever get used to coming in contact with her suffering.

 

I pray for her every single day, asking the Lord to release her from her agony and let her die.

 

I'm so very sorry you are walking this road with your mother. My prayers are with you today.

 

:grouphug:

[Impish]

unfortunately, mom is lost to dementia and can't speak her wishes at this time, but dad died in August and before he got REAL bad he had decided to stop treating her then. I was supportive of it, but didn't realize the facility she was living in and making her SO sick. Also, before her mind got lost to dementia she told me she was sick of doctors and hospitals. That was YEARS ago.

 

I do think we know what she wants but it's so painful to think about it. We're letting her direct her food/fluid intake right now. We're doing everything to make her life as rich as possible. Tonight we took her out to dinner. We haven't done that since September.

 

Hospice gave us a booklet on what to expect, and it appears her body is in the process of shutting down now. She may have months still, but clearly she is weakening. :sad::sad:

 

I wish something would take her, that we didn't have to make these decisions. But, I do think she's tired. She definitely hates being fussed over every day.

I just wanted to let you know how normal it is to feel this way. I don't know of a family that's had to deal with palliative care, especially with dementia that didn't. Its so incredibly hard to watch someone die over a prolonged period, a little bit at a time. One of my client's daughters said to me one morning over coffee (I often worked nights, so I would put coffee on, wake the family member, and update them as to what happened over night over coffee) "My mother died years ago. We just haven't been allowed to bury her yet." She felt horrible for feeling that way, but it was raw honesty. Her mother's body was still there, but the person who her mother was had left long before, vanished into Alzheimer's. Senility, Alzheimer's is a horribly cruel disease.

 

I just want you to know that I've been thinking about you, your family and your mom, and been keeping all of you in my prayers. I don't know if that brings you any comfort at all, but I hope it brings you some small measure. :grouphug::grouphug::grouphug:

[Alice]

We also had a wonderful hospice experience with my grandfather. He had lung cancer with bone mets and had opted for no chemo or treatment due to his age and the very little chance of cure. Because of the bone mets he had a lot of pain.

 

Hospice allowed him to stay at his home instead of being in the hospital. He had oxygen to use for comfort. The hospice workers were able to get him pain meds and a few times when he needed more were able to facilitate that very quickly for my Mom who was with him. He died peacefully, relatively pain free in his own home. I know for him it was absolutely the best and hospice was a large part of that. The nurses were wonderful and really provided a lot of support to my Mom (who was with him the most).

 

It sounds like you have made the right decision, although I'm sure it's very difficult.

[mamato4girls]

Praying for your dear Mama! :grouphug:

[Denisemomof4]

I just want you to know that I've been thinking about you, your family and your mom, and been keeping all of you in my prayers. I don't know if that brings you any comfort at all, but I hope it brings you some small measure. :grouphug::grouphug::grouphug:

 

thank you, and everyone, very much. Yes it comforts me MUCH to know others are praying. We are blessed with a wonderful support network, and with so many friends lifting us in prayer.

:grouphug::grouphug:

[Denisemomof4]

we had our first meeting with the Hospice nurse today. Know what's bothering me? The MEDICAL COMMUNITY has NOT been of help to us AT ALL. The nurse just gave me a shocked look a few times at what she was hearing.

 

I'm absolutely certain this was the right thing for us all. I'm going to finally get the support I should have gotten all along and I'll have someone I can call 24 hours per day if necessary. Mom's meds will be adjusted, something I've wanted for SO LONG. And we're letting MOM direct when she'll sleep and awake, and whether or not we'll get her out of bed. We make her get up now, to eat, and the nurse said, "Why? Let her stay in bed if she wants to." Why didn't I think of that? Honestly, it's because we didn't know what was going on. We were telling the dr. of different various symptoms, he had NO input. At least we now know what's going on - mom's body is weakening and that's making changes in how she functions.

 

She may still have months. Who knows? I just pray for a peaceful and comfortable transition into her next life.

[muffinmom]

:grouphug::grouphug::grouphug: Peace to you!

[6packofun]

I think it's a very wise decision to let your mom take the lead! I know what you mean about "why didn't I think of that?" For a while here we had a home health aid from a hospital coming 3 days a week and a hospice aid coming 3 other days a week. The difference in approaches was sometimes very drastic!! The regular aid would suggest getting her up and "active" and all sorts of activities and even rehabilitative stuff that was WAY beyond the state dh's grandmother was in. In a way, she kept trying to give an unrealistic hope and we were torn between the 2 philosophies...were we giving her a good quality of life on HER terms or were we forcing something because of unrealistic expectations? And hospice was not "giving up" or losing hope at all. It has been about honoring her life where she is at the moment and letting her finish the race on her time and in her way.

 

Anyhow, I understand. (((((Denise)))))

 

I'll be thinking of you and praying for you and your mom as you settle into this next phase of her care and your relationship! :)