sweetpeasmom
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Post by sweetpeasmom on Oct 22, 2023 20:55:06 GMT
Mom had a stroke in Jan. There is a lot to it but in May she ended up in a nursing home. Our goal was to get her to the point where she could transfer from bed to chair, chair to toilet, chair to bed. That never happened. She is impacted on her left side. Can still talk and has her it’s, for the most part. About a month ago, she started having headaches and numbness that came and went. Last Thurs, it was pain level 10 and complete left side numbness. Last Fri, I got her to the er and she was admitted for 6 days. 3 mris and a cat scan. Nothing new or could explain these new symptoms. She did have a UTI and the drs came to the conclusion that was exacerbating her stroke symptoms. She’s been back here since Wed. Still hurting and honestly, the tightness around her head is getting worse and she’s got tightness in her neck/throat. It came in Wed before getting discharged and the neurologist couldn’t explain it. She told the OT today she was tired of hurting and is ready to just go to bed. The OT mentioned it to me and said is it possible it’s time for pain management and hospice care? Mom hurts all the time. She takes 15mg of oxy as well as a muscle relaxer. She could take the oxy 4 times a day but she only takes it 2 sometimes 3. Is it time for hospice? I don’t know.
**UPDATE** Thank you all for your words of care and encouragement. I spoke with the hospice liaison today and she agreed to meet with me and mom at noon. We walked in and presented it to mom and mom didn't bat an eye. She said yeah. She signed everything herself. Then about 30 mins later a hospice NP came in to assess mom and get a good background on her. The way mom was accepting of this and how she handled her assessment gave me peace that this was the right decision for her to make for herself. I asked her if she was good with this when the nurse left and she said yeah. Then she asked if I was ok with it and I was able to say yes with certainty.
I think I mentioned somewhere in here that my grandmother was on hospice care for about 9 months, so mom is very familiar and knows the benefits.
I sent an email to my aunts and uncles (mom's siblings) and they were grateful for me to navigate this for mom.
I know that this does not mean that her life is ending tomorrow. I know that this will allow her to get better pain management (starting that tomorrow) and she will get another level of care for her specifically. The hospice CNA will come see her 2x a week and she'll have 45mins or so of care focused on her. She won't have other patients pulling her away. She will also have a nurse assigned to her (I already know her name).
Again, thank you all. I kept repeating the words several of you said, that so many times we wait too long to bring hospice on board. That helped me have so much peace on comfort as I approached this decision.
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Post by littlemama on Oct 22, 2023 20:58:13 GMT
I think you need to talk to your mother about what she wants. It doesnt sound like she will attain any decent quality of life, so if she is ready, then yes.
It doesnt hurt to have her assessed by hospice if that is something she is considering.
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CeeScraps
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~~occupied entertaining my brain~~
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Post by CeeScraps on Oct 22, 2023 21:00:32 GMT
I'm sorry this has happened.
Hospice will help to manage her pain. Talk to your mom and see what she says.
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Post by bearmom on Oct 22, 2023 21:06:37 GMT
I would have the conversation, I think often hospice isn’t brought in soon enough, but it is a hard decision. If not hospice, maybe palliative care? Not quite hospice, but symptom management - not treatment.
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scrappinmama
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Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Oct 22, 2023 21:37:16 GMT
I'm so sorry. It's really hard to watch a parent's health deteriorate. I would have an open conversation about this with her and see what she says. One thing I have learned with my own mother is that hospice doesn't mean the end is near. There are people who are on hospice a year+. They will manage her pain and keep her comfortable. But she needs to be ready to make that decision. If she's not, then there is very little you can do. My mom is currently on dialysis. Sometimes she cries and says that she is tired of it. But she refuses hospice at this time, so we just have to let her suffer through this. When she's ready, she will tell us.
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Post by don on Oct 22, 2023 22:27:16 GMT
This why we have End of Life Directives. I found it difficult to make the decision because I just didn't understand it. Now with Berla in Hospice I do see what it is about. Personally, I don't want to end with tubes and breathing machines. Being comfortable and pain free like Berla is, is the way I would prefer to go.
Watching her slowly go is really sad for me, I am just glad I don't have to make a decision to "pull the plug"
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Post by nightnurse on Oct 22, 2023 22:29:06 GMT
Yes, it’s time for hospice. Hospice is generally started far too late in this country because people worry it’s “giving up” or will hasten death. Neither of those things are true. It is focusing on the patient and her quality of life, ways to keep her comfortable and to help her enjoy the time she has left to her. It maximizes her choices. And if she finds that she wants more aggressive treatment, she can always revoke hospice.
I’m so sorry she’s in pain and I hope her treatment team can help.
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Post by stormsts on Oct 22, 2023 22:37:59 GMT
I’m sorry she is in so much pain. I would talk to her about hospice. My brother in law waited too long to have that discussion with his wife. She suffered too long before he got her on hospice. Once hospice came in they were able to manage her pain and make her comfortable. Being on hospice does not mean she is near the end of life.
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Post by lisae on Oct 22, 2023 22:53:32 GMT
It's definitely time to discuss this with your mother. If she is able to make this decision for herself, you will all feel better about it. I'm sorry you are in this situation. Hospice will sit down with her and you to talk about what this means before she makes a decision.
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Post by KelleeM on Oct 22, 2023 23:09:18 GMT
Definitely time for a conversation with your mom. She may be hesitant to bring it up to you. My late husband let me know, long before we knew we would have to make a decision, that when it was time he wanted to go. Like don, it was painful to watch but I was grateful to not have to make the decision. |
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Post by Zee on Oct 22, 2023 23:45:48 GMT
See if you can get a referral to palliative care of that's available in her area. I honestly feel family often feels very guilty about bringing up hospice and often the patient does too, like they're letting their family down by not "Fighting".
Palliative care can help you both find the end goal and help formulate a treatment plan. It's not the same as hospice but they can help guide you there.
But sometimes it is time to get ready to let go.
Hugs to you both. ❤️
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sweetpeasmom
Pearl Clutcher
Posts: 2,592
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Post by sweetpeasmom on Oct 23, 2023 0:43:08 GMT
See if you can get a referral to palliative care of that's available in her area. I honestly feel family often feels very guilty about bringing up hospice and often the patient does too, like they're letting their family down by not "Fighting". Palliative care can help you both find the end goal and help formulate a treatment plan. It's not the same as hospice but they can help guide you there. But sometimes it is time to get ready to let go. Hugs to you both. ❤️ She is in a nursing home and has been getting therapy (PT and OT) up until this past week. I believe PT has been stopped (she is showing no signs of progress and I do understand). She gets her pain medications, muscle relaxers, etc. What more would palliative care provide? How would it be different or more? |
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Post by hmp on Oct 23, 2023 0:52:59 GMT
I definitely recommend getting a consult from hospice. Whether or not they accept her as a patient is based on her medical history as well as their current physical evaluation. Just to be clear, hospice determines whether or not she’s ready, not you. As others have said, we wait way too long to get hospice involved. That’s why you rarely hear of people being denied hospice care. They are an incredible organization.
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sweetpeasmom
Pearl Clutcher
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Post by sweetpeasmom on Oct 23, 2023 1:01:39 GMT
I'm so sorry. It's really hard to watch a parent's health deteriorate. I would have an open conversation about this with her and see what she says. One thing I have learned with my own mother is that hospice doesn't mean the end is near. There are people who are on hospice a year+. They will manage her pain and keep her comfortable. But she needs to be ready to make that decision. If she's not, then there is very little you can do. My mom is currently on dialysis. Sometimes she cries and says that she is tired of it. But she refuses hospice at this time, so we just have to let her suffer through this. When she's ready, she will tell us. I do plan on having a conversation with her. It's not going to be easy. Or maybe it will be easier than I am anticipating. My grandmother was on hospice at home. Mom would be on hospice in the facility (or a facility if she can't stay at this one).
I guess I'll reach out to the facility and start there. They do have hospice and palliative care there. Maybe they can help me with this conversation.
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Post by Zee on Oct 23, 2023 1:02:25 GMT
See if you can get a referral to palliative care of that's available in her area. I honestly feel family often feels very guilty about bringing up hospice and often the patient does too, like they're letting their family down by not "Fighting". Palliative care can help you both find the end goal and help formulate a treatment plan. It's not the same as hospice but they can help guide you there. But sometimes it is time to get ready to let go. Hugs to you both. ❤️ She is in a nursing home and has been getting therapy (PT and OT) up until this past week. I believe PT has been stopped (she is showing no signs of progress and I do understand). She gets her pain medications, muscle relaxers, etc. What more would palliative care provide? How would it be different or more? This is a very brief answer but in short, hospice might be the best route for your mom, but a palliative care team helps everyone decide what the end goals are and helps everyone formulate a plan (that may or may not include hospice). This covers pain management but also the end goals such as PT, OT, symptom management, etc. It may be totally unnecessary if you both already feel hospice is the best answer. Palliative care just helps everyone define what they want to happen and what can be reasonably expected as an outcome. ETA quick Google link: www.crossroadshospice.com/hospice-palliative-care-blog/2018/june/19/what-is-the-difference-between-hospice-and-palliative-care/?mkwid=&pcrid=&pkw=&pmt=&pdv=m&gclid=CjwKCAjwkNOpBhBEEiwAb3MvvThEJ5D9vjRdt2uFilUk8rkmrs1j3Hh_a4NZlTyVwjuATxi3EestfxoCZvwQAvD_BwE |
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Post by Delta Dawn on Oct 23, 2023 1:08:37 GMT
Mum and sister were in hospice for at least a year. That gave us time to prepare. Hospice would come out in the middle of the night for Mum. It was such a sad but beautiful ending.
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katybee
Drama Llama
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Post by katybee on Oct 23, 2023 3:56:10 GMT
See if you can get a referral to palliative care of that's available in her area. I honestly feel family often feels very guilty about bringing up hospice and often the patient does too, like they're letting their family down by not "Fighting". Palliative care can help you both find the end goal and help formulate a treatment plan. It's not the same as hospice but they can help guide you there. But sometimes it is time to get ready to let go. Hugs to you both. ❤️ She is in a nursing home and has been getting therapy (PT and OT) up until this past week. I believe PT has been stopped (she is showing no signs of progress and I do understand). She gets her pain medications, muscle relaxers, etc. What more would palliative care provide? How would it be different or more? In Hospice care, pain medications are handed out much more freely. My brother’s hospice nurses would stress that there was no need for him to be in any pain. Ever. Our case manager would joke that she was a glorified pill pusher. There are also so many more services that come with hospice, including a social worker, a therapist for the patient and family, any and all equipment supplies you need… if we needed anything, they would deliver it. Our hospice nurse also mentioned that people wait too long to go on hospice. |
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Post by don on Oct 23, 2023 4:03:39 GMT
This is a good primer to explain Palliative and Hospice care. www.conciergecareadvisors.com/adult-family-homes-vs-nursing-homes/I applied for help from the VA in March, but I have heard nothing back. As for costs, we have no help from insurance or Medicare. We don't qualify for Medicaid. I am borrowing against the house to pay the bill. If there are no big surprises, I can get by for a year or year and a half. Berla is in an Adult Family Home as opposed to an Assisted Living Facility. The Home is limited to 6 patients and costs us $6300 per month. I did not shop around for a facility because the Hospice nurse recommended it because she had another patient there. I visit The Queen 3 or 4 times a week and I see the care she gets. She likes the caretakers. She gets full care as she cannot function. They feed her as much as she wants, but she only consumes about a fourth of what they offer, and it almost liquid as she has a hard time swallowing. If Berla says no to the food they try to cajole her into having another sip, but back off on the second try if she still won't eat. She spends about 18 hours a day in bed. |
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Post by mommaho on Oct 23, 2023 9:59:24 GMT
First of all - hugs, this is such a stressful time. My Mom showed significant decline and it was suggested by a social worker that we bring in Hospice for an evaluation. For us it was an extra set of eyes to help Mom when the AL nurses and aides were too busy. Mom's Hospice Case Manager was amazing. Luckily Mom and I had the conversation about end of life and we had a DNR in place. Hospice kept her comfortable and held my hand to walk me through everything that was happening. At 93 years old, my Mom passed October 5 after 11 days of no food or water.
To answer your questions - it is never too early to bring Hospice in for an evaluation. They will let you know if she is ready. They were on board beginning in June with Mom and said it would probably be about 6 months to end of life with her condition. Gave me more time to prepare, preplan and make sure we spent quality time with her while we could.
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Post by mikklynn on Oct 23, 2023 13:48:45 GMT
Hugs sweetpeasmom and don. It's really hard to have these conversations. My DH refused to give up until it was out of his hands. He was only in hospice 3 days, in the hospital. Really, I wish he would have accepted it sooner. |
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jimmysgirl
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Post by jimmysgirl on Oct 23, 2023 17:47:18 GMT
It sounds like she is being undermedicated for pain right now. (You said she could have more doses of oxy but doesn't take them. Why not?) When it's an end-of-life situation, why hold back on the pain control? Perhaps moving to the recommended dose would provide more consistent pain control and allow her to stay in her current situation for longer.
Pain creates so much stress. I would begin by advocating for better pain control where she is at.
Has she had Covid? And/or has she been vaccinated? I wonder if the headache pain is Long Covid-related. It seems like so many people are suffering from headaches of no understandable origin, and doctors are beginning to concede that that is the only possible reason. Updating her vaccination (if they are not already done) may provide some relief if she is potentially dealing with a low-level covid response.
And I agree with everyone else. It's never too early to start making plans and at least discussing it. Hospice doesn't have to mean an immediate end. Focus more on the comfort aspect of it -- not just for her but for you, too.
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Post by mom on Oct 23, 2023 17:53:00 GMT
It sounds like she is being undermedicated for pain right now. (You said she could have more doses of oxy but doesn't take them. Why not?) When it's an end-of-life situation, why hold back on the pain control? Perhaps moving to the recommended dose would provide more consistent pain control and allow her to stay in her current situation for longer. Pain creates so much stress. I would begin by advocating for better pain control where she is at. Has she had Covid? And/or has she been vaccinated? I wonder if the headache pain is Long Covid-related. It seems like so many people are suffering from headaches of no understandable origin, and doctors are beginning to concede that that is the only possible reason. Updating her vaccination (if they are not already done) may provide some relief if she is potentially dealing with a low-level covid response. And I agree with everyone else. It's never too early to start making plans and at least discussing it. Hospice doesn't have to mean an immediate end. Focus more on the comfort aspect of it -- not just for her but for you, too. Thank you for bringing this up. I was wondering this as well. Is she getting proper medication for her pain? You really need to start there and then after that's sorted out, work on the hospice stuff. Because if she is still hurting and has medication available to control the pain, why isnt she getting it? |
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sweetpeasmom
Pearl Clutcher
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Post by sweetpeasmom on Oct 23, 2023 18:06:31 GMT
It sounds like she is being undermedicated for pain right now. (You said she could have more doses of oxy but doesn't take them. Why not?) When it's an end-of-life situation, why hold back on the pain control? Perhaps moving to the recommended dose would provide more consistent pain control and allow her to stay in her current situation for longer. Pain creates so much stress. I would begin by advocating for better pain control where she is at. Has she had Covid? And/or has she been vaccinated? I wonder if the headache pain is Long Covid-related. It seems like so many people are suffering from headaches of no understandable origin, and doctors are beginning to concede that that is the only possible reason. Updating her vaccination (if they are not already done) may provide some relief if she is potentially dealing with a low-level covid response. And I agree with everyone else. It's never too early to start making plans and at least discussing it. Hospice doesn't have to mean an immediate end. Focus more on the comfort aspect of it -- not just for her but for you, too. She has to ask for it. For whatever reason she doesn’t. She told me yesterday she forgets. She’s so used to hurting (she’s had fibromyalgia 20+ years), she just does. When she was at home and could manage her meds, she’d take 2 in the morning and then 1 and 1 later in the day. I need to talk to them and see if the dr will change it to scheduled vs as needed. |
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Post by papersilly on Oct 23, 2023 18:20:02 GMT
i think only her doctor can determine if she is ready for hospice. just remembering when my mom entered hospice, there are qualifying conditions that will make a patient eligible for hospice or palliative care.
i believe it is never too soon to enter hospice. patients can enter or leave hospice care depending on their condition. it's just a different level of care that the patient receives. we entered hospice early and i'm glad we did. we established a routine for her hospice care so we were very familiar with the nurses and staff that came for the next few months until the end.
i know people who have gone into hospice during the last few days of their life and i know people who entered hospice care months and months before the end. our hospice nurse told us about patients improved enough to "graduate" our of hospice care and go back to regular care. best of luck to your mom.
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carhoch
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Post by carhoch on Oct 23, 2023 18:49:42 GMT
I believe that quality of life is more important than quantity but it should be her decision. These are hard decision /hard conversation and I don’t know if she’s up to it but if she is follow her lead and respect her wishes.
I have been there with my mom. It’s not easy I feel for you two .
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scrappinmama
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Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Oct 23, 2023 21:21:04 GMT
This why we have End of Life Directives. I found it difficult to make the decision because I just didn't understand it. Now with Berla in Hospice I do see what it is about. Personally, I don't want to end with tubes and breathing machines. Being comfortable and pain free like Berla is, is the way I would prefer to go. Watching her slowly go is really sad for me, I am just glad I don't have to make a decision to "pull the plug" I'm so sorry. It really is hard. And the end of life directives aren't always solid. My mom has one, does not want to be hooked up to any life sustaining machines, specifically mentioned not wanting dialysis. But when the time came, she changed her mind. She's suffering and it's really hard to watch. Hospice really is a gift and I'm glad that they are keeping Berla comfortable. |
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jill8909
Junior Member
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Post by jill8909 on Oct 23, 2023 21:24:33 GMT
I'm so very sorry for you and your mom. Of course you should ask her directly. I believe strongly in following the patient's wishes if at all possible. Then talk to the doctors for guidance.
Also - is someone handing her the pills or is she doing this herself? I'm wondering if medication management might help.
Good for you for caring and being there
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peaname
Pearl Clutcher
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Post by peaname on Oct 23, 2023 21:32:58 GMT
Ask for a hospice evaluation it’s not a commitment and they will address all your concerns.
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Post by cawoman on Oct 23, 2023 22:14:10 GMT
My Dad was on Hospice for about 3 months. He lived with me.
Once he was on Hospice, he said that he wished we had done it sooner. He was so relieved not to have to go out to go to the doctor, to the blood labs, etc. It was so much easier on him.
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Post by mikklynn on Oct 26, 2023 13:17:23 GMT
How are things going, sweetpeasmom? I hope they are managing your mom's pain better. |
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