Does anyone have experience with Palliative Care?

Posted by ashby1947 @ashby1947, Dec 11, 2020

Hello Everybody – If you have had experience with Palliative Care, I would truly appreciate hearing about it. What were your medical issues? What did your Care Team do? Did it work for you? I’m a 73 y.o. woman with multiply medical problems, most of which are severe: uncontrolled BP (on many medications which create their own problems); dizziness and lightheadedness; Hx of atrial fibrillation and supraventicular tachyicardia; stomach pain daily 8 or 9 on scale (this is recent and I’m not sure tx for heart burn is correct) and all the accompanying issues of no appetite, weight loss, constant nausea; diplopia which affects balance and self-confidence; lumbar stenosis; dry eye syndrome; and other. Sorry, don’t mean to be tedious. The reason I mention all these is that dealing with all of them, every day, is making me exhausted and depleted physically, mentally, emotionally, and spiritually. My husband is great; however, this obviously affects him. I am barely able to accomplish activities of daily living, and recently I have asked him to drive me because I don’t feel confident on my own.

I know that hospice care is for those with 6 mos or fewer to live. What I’ve read about Palliative Care mostly talks about care for people with one significant issue – cancer, heart disease, kidney failure. I wonder if I would even qualify since I have multiply problems. I have very good physicians and medical care here in Jacksonville. But they are each specialists. You know how it goes – no one is dealing with how they all interact and the compound effect on me. I have a long session scheduled with my PCP in a few days. He seems to deal only with the presenting problem.

Any thoughts or experiences you have had would be welcome! Hope this is a good day, Sue

Great question, @ashby1947.
Palliative care is more appropriately named Symptom Management care or Comfort Care. It is not exclusively meant only at the end of life, but is multidisciplinary care focused on managing pain and other symptoms that affect quality of life. It is a holistic approach dealing with physical symptoms and emotional and spiritual needs as well, and can involve family members, not just the patient.

As you mentioned, palliative care may be offered for people living with cancer, heart conditions, kidney conditions, multiple chronic conditions and more. For this reason, I have added this discussion to multiple groups on Connect to gather experiences from different members such as @IndianaScott @bluffitis @wsh66 @marvinjsturing @mscarano @becsbuddy @nicee and others.

Ashby, have you inquired about palliative care at Mayo Clinic in Jacksonville?

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@colleenyoung

Great question, @ashby1947.
Palliative care is more appropriately named Symptom Management care or Comfort Care. It is not exclusively meant only at the end of life, but is multidisciplinary care focused on managing pain and other symptoms that affect quality of life. It is a holistic approach dealing with physical symptoms and emotional and spiritual needs as well, and can involve family members, not just the patient.

As you mentioned, palliative care may be offered for people living with cancer, heart conditions, kidney conditions, multiple chronic conditions and more. For this reason, I have added this discussion to multiple groups on Connect to gather experiences from different members such as @IndianaScott @bluffitis @wsh66 @marvinjsturing @mscarano @becsbuddy @nicee and others.

Ashby, have you inquired about palliative care at Mayo Clinic in Jacksonville?

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Hi Colleen – Thank you for your response and information. Yes, I spoke with a person at Mayo Jacksonville about their palliative care program. I learned that i need a referral from my doc in order to get an initial consultation. I see my PCP next week, so I don't think there will be a problem. I also learned that Medicare and my supplemental are accepted for payment. You are so good at following posts and making connections. You are a bonus in the Connect community, and I am grateful for the work you do for all of us! Thanks again. Sue

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Hello @ashby1947 My husband has supportive/palliative care. He didn't always and our experience with supportive care is absolutely wonderful! My husband has Stage IV Lung cancer and has other issues as well (Tachycardia, dizziness issues, tremor, pain issues, etc). I have had cancer and recently lymphedema from my cancer surgery and hospitalization with sepsis. I am my husbands sole caregiver as well as taking care of my Mom and Mother In Law, who don't live with us but have multiple needs and medical issues as well that my husband and I take care of for them. At one point my husband's cancer was called, 'cancer of unknown primary'….the doctors didn't know the actual type of cancer (we now have a diagnosis guess at least). My husband takes about 12 different drugs, is having chemo and immunotherapy and radiation treatments. I'm still working. Because there were so many doctors and concerns it was overwhelming for me to manage all the drugs, know which doctors to call for what, etc. We were running from appointment to appointment and I was trying to manage it all and make decisions about what might be causing his symptoms. Although I think I do a pretty great job (ha ha) one doctor prescribed an increase in dose of one of my husbands meds which caused him to become highly erratic and I 'lost' it with our oncologist (who is a great doctor). I was expected to manage a complicated situation and although I spent a lot of time on the phone with docs and reading and researching – the oncologist got us supportive care and it's been a real blessing. Now I have one doctor to call about concerns and he makes the decision as to what we should do. He coordinates care with all the other disciplines and recently got my husband physical therapy for his dizziness….something I would have NO IDEA even existed. All blood work is done in our home, a nurse visits once a week and is available by phone 24/7, we have social service support and a chaplain that visit and try to help me as a caregiver to manage the workload with this. My husband has Medicare and a supplement with our insurance carrier and the costs are finally manageable for his care as well. I think when I 'snapped' it made them realize how complicated my husbands care had become and how we couldn't manage it without more support. The referral was made by our oncology team in this case. The care has to be reauthorized every six months in our case. We're on our second six months. My husband's cancer 'qualifies' him as terminal and not curable but we're still hopeful that he will have much more time than we thought 6 months ago….more like a years perhaps. If your situation is becoming too overwhelming I would certainly request supportive care because I believe it's extended my husband's life and kept me from losing my mind and health. Good luck and Hugs………….

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Hi @ashby1947 I'm Scott (aka Indianaswp) who Colleen referenced in her response to your initial post.

I realize each patient, their illness, and journey is unique. No two are the same so I can only relate our experiences.

In her late 40s my wife was diagnosed with a brain tumor. Due to the type and location of her tumor coupled with post-surgical complications, she was in palliative care for the first 12 years of her war, then in home hospice for the last 2+. There was no chance of curing her, so her care was always focused on keeping her comfortable, pain free, etc.

This was mostly successful as a course of care for her. She was by and far most often pain-free and comfortable. That said it wasn't perfect and, again in her case, her medicinal cocktail required constant adjustments. It wasn't until she was in home hospice that they were ever able conquer her incredibly high anxiety. We certainly realized no course of care is ever perfect and always knew palliative care was her only choice given her situation. We never regretted the care she received.

I'm happy to answer any questions you might have!

Strength, courage and peace

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The home hospice program that provides care for my 78-year old wife, who suffers from Alzheimer's disease, recommended right from the outset six years ago that their caregivers provide palliative/supportive care. That seemed sensible to me. So that has been the paradigm for her care ever since. While she was at home, my wife received essentially the same type of services your husband receives — care coordination, five day a week home care from visiting aides, a chaplain's visit once a month, a doctor's visit also once a month. She is now in a nursing home, receiving minimal medication except for her glaucoma. She is now wheelchair bound and no longer talks. But she is aware of my presence when I visit (all too infrequently because of covid visitation restrictions) and seems to perk up when she sees me. I am hoping to be able to bring her home with me before too long and to go back to the supportive/palliative care we provided before she went into a nursing home. The reason she went there had nothing to do with her. I was hit by a car, suffered broken bones and was hospitalized. Because I was not able to care for her properly as I was recuperating, she entered the nursing home a year ago at the recommendation of a social worker who worked with us. I am now almost completely recovered. And I miss her and do want to spend the waning days of our long marriage separated from each other. I'm hoping to be able to pull it off. Wish us luck! John

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@ashby1947 So sorry to hear of your health problems. I currently am receiving caregiving from Home Instead Senior Care and am quite pleased with their services (i had a hip replacement and my husband has Alzheimer's). Home Instead provides all levels of care, including housekeeping, food preparation, transportation, etc. How exactly Home Instead might assist you would be determined by meeting with them. I currently have 24/7 care, but will be reducing my hours. Hope this helps.

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My husband, who had a terminal mesothelioma diagnosis from Mayo Rochester, saw their palliative care (PC) department many times, but I recall that I had to request those services during our initial consults with pulmonology. I did not find any of their offerings to be particularly helpful in our case and some of what they did was hurtful. We did not live in the Rochester area, so I suspect that the best way to get the optimum care is to live where your care team is located. I am disappointed that our pulmonary doctors did not initially set us up with PC – mesothelioma is a difficult cancer from a symptom management perspective. So my experiences with a PC term were not what I'd hope it is for others. Perhaps my expectations are too high. At the end of his life, we got on board with our local hospice. That was also an unfortunate experience. I wish doctors would focus more on encouraging quality of life instead of trying to "treat" diseases from which there is no recovery.

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@lisakuehl

My husband, who had a terminal mesothelioma diagnosis from Mayo Rochester, saw their palliative care (PC) department many times, but I recall that I had to request those services during our initial consults with pulmonology. I did not find any of their offerings to be particularly helpful in our case and some of what they did was hurtful. We did not live in the Rochester area, so I suspect that the best way to get the optimum care is to live where your care team is located. I am disappointed that our pulmonary doctors did not initially set us up with PC – mesothelioma is a difficult cancer from a symptom management perspective. So my experiences with a PC term were not what I'd hope it is for others. Perhaps my expectations are too high. At the end of his life, we got on board with our local hospice. That was also an unfortunate experience. I wish doctors would focus more on encouraging quality of life instead of trying to "treat" diseases from which there is no recovery.

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@lisakuehl I am saddened to hear the responses from both Palliative Care and hospice groups did not live up to what you needed from them.

I am wondering if it would be helpful for you to explain your situation to them, and let them know how they could have improved their actions? It may be very rewarding for you, help with your grieving process, and pave the way to another patient's family having a better experience.
Ginger

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@ashby1947 Good afternoon.it sounds as though you are trying to work through an emotional and physically exhausting situation. How long have you been doing this? I know you said that your husband gets very emotional with this. Is he able to help you?
I don’t personally have experience with palliative care, but I was on the palliative care team at the hospital where I worked. Our team would set up meeting with the patient and family to help them decide what they wanted and then make recommendations and referrals. Think of these meetings as interviews. Do you like their philosophy, can they provide care you need, and do they have procedures around protection from Covid-19?
I think the suggestions of Home Instead and other healthcare agencies would be good to look at. Some hospice groups also have a homecare agency, so check with them. Jacksonville Mayo would be a good starting point for information on Palliative care and also may have some referrals for you.
You will also want to think about how much help you will want and can tolerate. Maybe just someone to come in the mornings to help you dress, make the bed, and clean the kitchen is enough.
This is a lot to think about. But remember, you can always get more or less help as time goes along. I wish you luck in your search! Hopefully, you’ll come back and tell other members what you’ve learned ! Will you do that?

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@djangomay2

The home hospice program that provides care for my 78-year old wife, who suffers from Alzheimer's disease, recommended right from the outset six years ago that their caregivers provide palliative/supportive care. That seemed sensible to me. So that has been the paradigm for her care ever since. While she was at home, my wife received essentially the same type of services your husband receives — care coordination, five day a week home care from visiting aides, a chaplain's visit once a month, a doctor's visit also once a month. She is now in a nursing home, receiving minimal medication except for her glaucoma. She is now wheelchair bound and no longer talks. But she is aware of my presence when I visit (all too infrequently because of covid visitation restrictions) and seems to perk up when she sees me. I am hoping to be able to bring her home with me before too long and to go back to the supportive/palliative care we provided before she went into a nursing home. The reason she went there had nothing to do with her. I was hit by a car, suffered broken bones and was hospitalized. Because I was not able to care for her properly as I was recuperating, she entered the nursing home a year ago at the recommendation of a social worker who worked with us. I am now almost completely recovered. And I miss her and do want to spend the waning days of our long marriage separated from each other. I'm hoping to be able to pull it off. Wish us luck! John

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I will think of you often and send good thoughts your way! I cared for my mother who had altzheimer's for many years. You're blessed she still knows you and you can enjoy each other. Hopefully, she'll get back home to you soon. Blessings.

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@ashby1947 Hello Sue. I am Nancy, a volunteer mentor here on Connect. You seem to have many of all the same kind of questions that many have about palliative care. I was sorry to hear about that significant list of medical concerns with which you have to deal, and have no doubt they literally wear you out. I also would recommend that you contact the palliative care there at Mayo. While I have not had personal experience, I know of several who have. They spoke about how helpful and personalized the help was, and everything seemed very appropriate. To me the important piece seems to be that nobody has to go through those things alone. Sometimes we don’t like being “high maintenance” for a spouse, no matter how kind and generous they are. It feels good to take control of some of those issues ourselves and find help on our own. You seem to have a good handle on the things you need to do to make this happen and I wish you all the best as you move forward. Please get back and let us know how things work out for you.
Peace, Nancy

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Hello, Ashby1947. I've just now read your messages and realize I have a kindred spirit. You have a lot of different and serious issues you're dealing with in this life of ours. I didn't know there were others who have such a platefull. I, too, have multiple health issues, most of the serious and causing pain or making my life more and more difficult. I've had double vision, in both eyes, for several years. Now, it comes and goes. Never know when it'll hit, so walking/driving can be interesting. I now close one eye to see, which works well but does mess up my periferal vision. I've needed help for such a long time. I only began to get that help when I had a melt down and called Mayo, Jacksonville, They were wonderful and the last 2 years with those doctors and staff have truly saved my life and given me new life. I never would have thought I'd be doing so well today. They undiagnosed MS, Parkinson's, epileptic seizures I've had since age 11, and so much more. They've diagnosed and are treating the real issues and helping me find reasons for each health problem that comes along….and they do keep coming. Because of you, I'm learning about palliative care. I thought mistakenly this was geared for end of life or such care. I need more help than I have, but don't need home health care nursing or personal care. Now, because of your questions and this fantactic Connect with Mayo. Also, since I live alone, there are additional problems. I'm going now for a new round of care with Mayo docs – dermatology, removing some little areas of growths that need to be gone….gastro to find out what's happening, audiology for hearing loss, neuro opthomology for worsening visions, at times blurred or not clear and of course serious dry eye! I think there's a social work dept that can give us guidance in these areas of home help, transportation and such. We'll see what happens. Thank you for your questions and your sharing. I believe we share a lot of the same life issues…..heading to bed. I'm exhausted. Wearing a heart monitor, cute little thing, isn't it? Need to charge the sensor and get to bed soon. Blessings, my new friend. I look forward to hearing about your journey as we travel along. Elizabeth

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@1nan

@ashby1947 Hello Sue. I am Nancy, a volunteer mentor here on Connect. You seem to have many of all the same kind of questions that many have about palliative care. I was sorry to hear about that significant list of medical concerns with which you have to deal, and have no doubt they literally wear you out. I also would recommend that you contact the palliative care there at Mayo. While I have not had personal experience, I know of several who have. They spoke about how helpful and personalized the help was, and everything seemed very appropriate. To me the important piece seems to be that nobody has to go through those things alone. Sometimes we don’t like being “high maintenance” for a spouse, no matter how kind and generous they are. It feels good to take control of some of those issues ourselves and find help on our own. You seem to have a good handle on the things you need to do to make this happen and I wish you all the best as you move forward. Please get back and let us know how things work out for you.
Peace, Nancy

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Hello Nancy – I very much appreciated your comments. You put into words some things that I have in my mind. I do not speak of my woes to others, except my husband, and then not more than is necessary (my choice). Perhaps that is because I was a psychologist and am more accustomed to listening than speaking – especially about myself! Not that friends or loved ones would not understand. It's just that my mind is so full of my woes, it is a respite to talk about other things. Mayo Connect is a Godsend to be able to talk about everything that is completely consuming me and be greeted and understood without feeling self absorbed. You are right, of course, about taking back control as much as I can. Like many others, I have exhausted my personal resources and will welcome working with and the support of professionals in this field. I shall keep in touch. Hope this is a good day! Sue

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@ashby1947 Sue, perhaps you and I have more in common than you would guess. I am glad you found connect and trust support that can come with this community. I have no doubt people who know you personally and know you are a psychologist expect you to “fix yourself“ and therefore do not reach out as much as they otherwise might. It just doesn’t work that way always, does it? Take comfort in knowing you have so many good skills to bring to your own table, and realize how much they have already and will continue to serve you well. And then continue to reach out to those places where your support can be found. Connect included.
Nancy

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@ess77

Hello, Ashby1947. I've just now read your messages and realize I have a kindred spirit. You have a lot of different and serious issues you're dealing with in this life of ours. I didn't know there were others who have such a platefull. I, too, have multiple health issues, most of the serious and causing pain or making my life more and more difficult. I've had double vision, in both eyes, for several years. Now, it comes and goes. Never know when it'll hit, so walking/driving can be interesting. I now close one eye to see, which works well but does mess up my periferal vision. I've needed help for such a long time. I only began to get that help when I had a melt down and called Mayo, Jacksonville, They were wonderful and the last 2 years with those doctors and staff have truly saved my life and given me new life. I never would have thought I'd be doing so well today. They undiagnosed MS, Parkinson's, epileptic seizures I've had since age 11, and so much more. They've diagnosed and are treating the real issues and helping me find reasons for each health problem that comes along….and they do keep coming. Because of you, I'm learning about palliative care. I thought mistakenly this was geared for end of life or such care. I need more help than I have, but don't need home health care nursing or personal care. Now, because of your questions and this fantactic Connect with Mayo. Also, since I live alone, there are additional problems. I'm going now for a new round of care with Mayo docs – dermatology, removing some little areas of growths that need to be gone….gastro to find out what's happening, audiology for hearing loss, neuro opthomology for worsening visions, at times blurred or not clear and of course serious dry eye! I think there's a social work dept that can give us guidance in these areas of home help, transportation and such. We'll see what happens. Thank you for your questions and your sharing. I believe we share a lot of the same life issues…..heading to bed. I'm exhausted. Wearing a heart monitor, cute little thing, isn't it? Need to charge the sensor and get to bed soon. Blessings, my new friend. I look forward to hearing about your journey as we travel along. Elizabeth

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Hi Elizabeth – Kindred spirits indeed! Thank you so much for sharing. When you said we had a plateful, that really resonated with me. Having a multiplicity of serious health issues presents different problems for us than for people who just have one issue. Not better or worse, just different. Of course since we are aging, there are always new things cropping up. I am so glad that you are learning about palliative care. As i mentioned, I am just beginning to explore it myself. I do not need home care nursing nor personal care, just the support of various disciplines and one medical professional to coordinate my care. As I understand it, that is the essence of palliative care. As we learn more about it, we will have to share. About your diplopia – Tell me more! Mine is the result of tube shunt surgery two years ago for glaucoma. Apparently a muscle got disturbed or out of place. Glaucoma doc is happy because my pressures are great; however, he doesn't have much to say about the diplopia – you know, not his speciality! It is so hard to talk to someone about what it feels like to have double vision and how it affects your life. With all my ailments over the years, the diplopia has had the most profound impact on me. Tell me more about what caused your dbl vision, why yours comes and goes, and how are you coping. How is your vision affected? I have it in my left eye and I cannot see my feet nor my plate of food without the ghosting. I guess I'm fortunate that from eye level and beyond, the diplopia does not affect my vision. I can see TV, but cannot read. My affected eye is painful and blurry at times, also very dry, of course. Any suggestions are welcome! We are fortunate to have access to Mayo JAX. I used to be a hospital administrator, and Mayo is the best! Thank you so much for your contact. You are right, sharing things along the way makes these pesky issues easier to bear. I hope this is a good day for you.! Sue

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