Does anyone have experience with Palliative Care?

@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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@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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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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Hello, Sue. I read your message and as I'm writing, I have a smile on my face, just took a really deep breath, shoulders went down a
'foot'!, neck and head still hurt but will probably hurt less as I go along. It 5 PM. I came downstairs an hour ago, put a Publix Aprons ready to heat chicken breast stufffed w/spinach and gouda cheese. I love these prepared meals from them. I can eat real, 'home-made' food w/o preservatives and soo many additives...all I do it stick it in it's pan in my new covection oven, set and wait. What a wonderful way to 'cook'. Either that or Publix deli stuff and/or frozen Healthy Choice or whatever...with no preservatives. I eat yogurt and fruit w/granola parfaits for breakfast, and have an Atkins smoothie. This is pretty much what I eat these days. The yogurt and smoothies help my tummy and relux. And, give me good calcium. I haven't had milk products other than that due to intolerance. The beginning of this horrid year, I set up a little special area for myself in my 'kitty' room, 3rd bedroom w/kitty litter. I have a small fridge for diet coke, bottled water, electrolyte water, Atkins smoothies, yogurt, white grape juice, iced tea I get from Publix in quart bottles I can lift....arthritis in hands, wrist, fingers, everywhere so i can't lift anything as heavy as a gallon of water. I've figured out lots of ways to accomplish what I need to do, but I do get so frustrated and angry that I can't do what I want, when and how I want. I moved fast and with real purpose all my life. What a change!!! BTW: I was in retirement administration for 15+ years, until I just couldn't deal with the emotional strains of 24/7 responsibility for so many lives of the older residents and their families. So, I left, had emergency abdominal surgery for a large benign tumor, opened a shop in a residential area, selling home decor, stationery, greeting cards, gifts of all sorts, collectibles and whatever else I thought fun. I loved it, had a ball and almost killed myself with the work. But, that's what I did....throughout my life....Well, you asked about the double vision. I was diagnosed with Myasthenia Gravis and that was considered the cause. It wasn't/isn't. I don't have it...after 8+ years of the diagnosis. Why the dilopia? Don't know. So far, no one has given me a reason. Since I had eyelid surgery at Mayo to tighten the lids so I can again open my eyes, all the way, I do see much better and the surgery was totally successful. I still have dilopia, but not as often. Before, it was always and then most of the time. Now, for the last year, it comes and goes on a whim. No idea what brings it on, unless it's related to being tired, or ill or mechanical in some way. Now, my sight is getting worse at times. Blurred, writing or sight just off kilter if that makes sense? Not quite double, but off....I can't see distance clearly any more, can't see street signs. I often can't read with my reading glasses, or read on the computer. Now, I see ok with reading glasses, but after a bit on the computer, it'll get blurred or unclear. Also, my dry eyes get really seriouly bad at times. That interferes with sight as well. I use Refresh as needed, Xiidra drops 2X daily. They help some. So, since the eyes are worsening, I'm seeing Mayo neuro opthomologist next week. This coming week I see cardiology for additional work-ups...bldwk, ekg, echo, meeting w/doc. I'm wearing a heart moniter for a month, since I was in Mayo hospital a couple weeks ago for thyroid mess and probably heart as well. Thyroid is better controlled now with less synthroid, I was over medicated.Amazing how many symptoms are now gone or controlled by just that adjustment! Then, the following week I see the neuro opthomologist. I do hope he'll find an answer of some kind. It'd be lovely to get some real relief from the dry eye as it affects my life much of the time. If he can determine the cause for dilopia, wouldn't that be lovely. I think 'coke bottle' glasses are used for that and help us focus better, see only one of anything. Oh, I do see 2 at all levels. Watching tv is fun! I have 2 screens, 2 of everything in blocks, almost side by side. That's the way I see the world when it's bad. Now, I just looked at this message!!! I can't write this long!!! Sorry, I got started and guess with you I must remind myself to stop. It does feel wonderful to share these personal, real parts of my life with someone I'm sure really understands what I'm saying. Understands what I'm feeling. Another deep breath....thanks for being on this Mayo site, Sue. Thanks for sharing. You are a gift to me. I hope I can return the favor. Blessings in this journey. 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

Jump to this post

Hello, Sue. I read your message and as I'm writing, I have a smile on my face, just took a really deep breath, shoulders went down a
'foot'!, neck and head still hurt but will probably hurt less as I go along. It 5 PM. I came downstairs an hour ago, put a Publix Aprons ready to heat chicken breast stufffed w/spinach and gouda cheese. I love these prepared meals from them. I can eat real, 'home-made' food w/o preservatives and soo many additives...all I do it stick it in it's pan in my new covection oven, set and wait. What a wonderful way to 'cook'. Either that or Publix deli stuff and/or frozen Healthy Choice or whatever...with no preservatives. I eat yogurt and fruit w/granola parfaits for breakfast, and have an Atkins smoothie. This is pretty much what I eat these days. The yogurt and smoothies help my tummy and relux. And, give me good calcium. I haven't had milk products other than that due to intolerance. The beginning of this horrid year, I set up a little special area for myself in my 'kitty' room, 3rd bedroom w/kitty litter. I have a small fridge for diet coke, bottled water, electrolyte water, Atkins smoothies, yogurt, white grape juice, iced tea I get from Publix in quart bottles I can lift....arthritis in hands, wrist, fingers, everywhere so i can't lift anything as heavy as a gallon of water. I've figured out lots of ways to accomplish what I need to do, but I do get so frustrated and angry that I can't do what I want, when and how I want. I moved fast and with real purpose all my life. What a change!!! BTW: I was in retirement administration for 15+ years, until I just couldn't deal with the emotional strains of 24/7 responsibility for so many lives of the older residents and their families. So, I left, had emergency abdominal surgery for a large benign tumor, opened a shop in a residential area, selling home decor, stationery, greeting cards, gifts of all sorts, collectibles and whatever else I thought fun. I loved it, had a ball and almost killed myself with the work. But, that's what I did....throughout my life....Well, you asked about the double vision. I was diagnosed with Myasthenia Gravis and that was considered the cause. It wasn't/isn't. I don't have it...after 8+ years of the diagnosis. Why the dilopia? Don't know. So far, no one has given me a reason. Since I had eyelid surgery at Mayo to tighten the lids so I can again open my eyes, all the way, I do see much better and the surgery was totally successful. I still have dilopia, but not as often. Before, it was always and then most of the time. Now, for the last year, it comes and goes on a whim. No idea what brings it on, unless it's related to being tired, or ill or mechanical in some way. Now, my sight is getting worse at times. Blurred, writing or sight just off kilter if that makes sense? Not quite double, but off....I can't see distance clearly any more, can't see street signs. I often can't read with my reading glasses, or read on the computer. Now, I see ok with reading glasses, but after a bit on the computer, it'll get blurred or unclear. Also, my dry eyes get really seriouly bad at times. That interferes with sight as well. I use Refresh as needed, Xiidra drops 2X daily. They help some. So, since the eyes are worsening, I'm seeing Mayo neuro opthomologist next week. This coming week I see cardiology for additional work-ups...bldwk, ekg, echo, meeting w/doc. I'm wearing a heart moniter for a month, since I was in Mayo hospital a couple weeks ago for thyroid mess and probably heart as well. Thyroid is better controlled now with less synthroid, I was over medicated.Amazing how many symptoms are now gone or controlled by just that adjustment! Then, the following week I see the neuro opthomologist. I do hope he'll find an answer of some kind. It'd be lovely to get some real relief from the dry eye as it affects my life much of the time. If he can determine the cause for dilopia, wouldn't that be lovely. I think 'coke bottle' glasses are used for that and help us focus better, see only one of anything. Oh, I do see 2 at all levels. Watching tv is fun! I have 2 screens, 2 of everything in blocks, almost side by side. That's the way I see the world when it's bad. Now, I just looked at this message!!! I can't write this long!!! Sorry, I got started and guess with you I must remind myself to stop. It does feel wonderful to share these personal, real parts of my life with someone I'm sure really understands what I'm saying. Understands what I'm feeling. Another deep breath....thanks for being on this Mayo site, Sue. Thanks for sharing. You are a gift to me. I hope I can return the favor. Blessings in this journey. Elizabeth

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