September 17, 2020 at 4:38 pm #27293AnonymousInactive
Hello everyone! I hope all is well. I started palliative care a few weeks ago, it took many months with Covid to be able to get everything scheduled and organized. I am definitely feeling a lot more rested and am more comfortable. I do find it hard asking for help, my caregiver does get paid by the hour and can work up to 44 hours a week. But I find it tough asking for things to be done. Just wondering how everyone else handles this? And also mentally it makes me feel like I have given up on myself, I definitely can no longer do the things I use to do and am mostly using my wheelchair to get around. Just curious to see how anyone else handles all of it? Thanks!
September 18, 2020 at 9:18 am #27306
Hi @shannon4jk, I have been thinking of you, so I am happy to see you posted an update. First, please do not feel that you are “giving up on yourself” because you are on palliative care. Palliative care helps improve the quality of life for those living with many different types of illnesses.
I am grateful that you feel more rested and also have some much-needed assistance. These points are so important when dealing with chronic disease. I think mentally, many think palliative care and think, “oh, my life is over.” This is far from the truth.
For those unfamiliar with palliative care, I have shared this link to help you better understand the focus of palliative care. I do know a few other PH patients who have been on palliative care for years, and it helps them and their families.
So please do not be so hard and guilt yourself, Shannon. This is probably one of the best decisions that you have made. Gilt is a such a struggle. Did your doctors suggest this or someone else?
Thinking of you and your family and please don’t stay away so long.
September 22, 2020 at 11:18 am #27351
Hi @shannon4jk, I just wanted to check in on you to see how things are going for you with palliative care. I hope that they are helping and you can rest a bit better. Please share an update when you can. We are thinking of you.
September 22, 2020 at 6:48 pm #27363Carol VolckmannParticipant
Hi Shannon, I just read your post and read Jen’s info on palliative care. I really hope this is helping you physically and taking so much of your stress away. Folks that I know feel so much better having decided having palliative care. Their lives are not so stressed out and having a team their for them has made their lives better. Please don’t feel like you have given up on yourself, quite to the contrary, you have taken a step to improve your life. Wishing you all the very best snd sending you big hugs and lots of smiles!
September 22, 2020 at 7:16 pm #27369
@shannon4jk I believe that accepting help from palliative care is far from giving up, but actually taking charge of your situation. It shows that you care about your well-being and will do everything you can to maintain it. I hope that in time you will find that helping hands makes you feel stronger.
If asking palliative care to assist with certain things makes you uncomfortable, maybe discuss that with them. Explain how difficult asking help is for you and maybe they can help ease your concerns.
It’s really good to hear from you by the way.
September 28, 2020 at 1:28 pm #27431AnonymousInactive
Hi Jen! How are you feeling? Thank you for the link. I did read everything. I am having a hard time finding my “purpose “ in life at this time. With Pallative care I don’t have much to do anymore. And I feel more like a burden. Hard to explain but that’s how I feel. And all my meds have been switched around , my PH meds were making my Autoimmune Diseases worse and causing more issues with my lungs. I am just tired of living like this. Thank you as always for your kind words. Take care.
September 28, 2020 at 1:33 pm #27432AnonymousInactive
Thank you Carol! How are you doing? I hope all is well. Palliative care is helping with my physical well being. I feel rested and not much for me to do. I guess I have to find a new normal for this part of my life , it’s just extremely hard! Mentally I am worn out. Thanks again for your kind words. And big hugs to you!
September 28, 2020 at 1:43 pm #27433AnonymousInactive
Hi Colleen! I hope all is well with you and your family. Yes it is hard for me to ask for help. I have started writing a list down of things I would like done. That seems to help. But I am still having a hard time. I will say that I do like that meals are delivered. And I can eat them because they are low salt and heart healthy. Which is a great relief for me. But I still find myself constantly thinking what will my kids eat. Even though they are all grown. I am hoping once I find a routine with this part of my life things will get easier. Thanks for your kind words.
September 28, 2020 at 2:56 pm #27435
Hi @shannon4jk, I am sorry that you still are feeling like you are a burden. I am sure that is far from the truth. I am sure that your family loves and cares for you as you have them. I hope that in time, you will rest and be in a better place mentally. Let your family show you the love and care that you have shown them. It may take a bit to adjust to this new normal for you, but you will get there. I know that you have taken care of your kids for years, and as moms, we never stop worrying. Be patient and kind to yourself. Rest and try to ” go with the flow,” as my hubby reminds me often.
I am doing pretty well today, thanks. I am sending you big hugs from Texas. <3
September 28, 2020 at 5:30 pm #27436Carol VolckmannParticipant
Hi Shannon, I hope you are able to let go of this feeling of being a burden. I am sure that is far from your family and caregivers feel. It is hard to ask for help, but writing down what you need is a gteat idea. I am glad you are feeling better physically now you can just rest and work on letting go the negative and letting in the positive energy! Sending warm hugs you deserve them.
September 28, 2020 at 9:46 pm #27442
@shannon4jk writing the things down that you would like help with was a great idea. I hadn’t thought of suggesting that. As a mother, I totally understand your never ending worry about your children – no matter their age. I hope this new adjustment will eventually feel routine to you so that sense of normalcy can slowly and safely slip back in little by little. Just remember, part of being a good mom is taking care of yourself too. That alone is setting a good example.
September 29, 2020 at 3:52 pm #27458Mendo BruceParticipant
I have been getting Palliative Care for several years for my end stage emphysema. I’ve been getting In Home Support Services from a different source (25 hours/week) but I requested Palliative Care primarily because all my other doctors were afraid to prescribe me morphine for my air hunger during exercise due to the anti-opioid political climate.
I usually turn to the palliative care team first for all my medical difficulties. I find that when my problems are presented to my regular doctors by the Palliative Care team, they are responded to much quicker and treated much more seriously.
By the way, two recent large studies in JAMA have confirmed the safety and usefulness of morphine in COPD. I have been using it for over two years. I have recently had to stop exercising for 10 days and again for 7 days during these recent fires. I did not use my morphine when not exercising (I normally use it M, W, F, Sat) and I had no problems abstaining.
September 29, 2020 at 6:32 pm #27464AnonymousInactive
Thanks for replying Mendo. Do you feel like receiving Palliative Care has given you a better quality of life? Or is yours more for pain management? My doctor has been pushing Palliative Care for me for 2 years I always said no. But I am finding it to be useful. I just have a hard time with someone constantly being around me. Like let me try to breathe! Lol and they don’t help with my meds at all everything like that I still talk to my doctor. Actually my Doctor won’t talk directly to my caseworker for my care. Which is kind of odd? My Doctors only talk to me. As far as morphine I had to get off of that! It was horrible for me. I am now on Fentanyl patches, the lowest dose, and I don’t care much for it either. But I have to do something for pain control or I can’t even move. Do you have a team that helps with your care? Or just one person? Sorry so many questions, I am new to this! Thanks for your help and information.
September 30, 2020 at 12:04 pm #27479
Thank you, @mendo-bruce, for sharing your experience with palliative care. That is how it should work. I am sorry that you needed it but happy that they can help you. I do remember you talking about taking morphine on your exercise days. I worked with hospice before PH. I know that we worked well with the doctors.
How are the fires near you now? Any better?
@shannon4jk, it may be that you are not under their “medical director” and still under your doctor who does order things and talk to you. The nurses and care team with palliative care should interact with your doctor for orders about you. I am unsure of why the case manager can not talk directly to the doctor. I would suggest asking your case manager if she knows why. Ask if you were under their “medical director” if this would be easier for you. It should be about improving your quality of life, not complicating it.
September 30, 2020 at 5:11 pm #27488Mendo BruceParticipant
I don’t take morphine for pain, I take it for air-hunger. My palliative care team is hospital based, they aren’t “constantly being around me”, in fact, I only see them when I make a trip to see them. I may need in home care at some point, but right now mostly I phone or message via internet portal when I need something.
My In Home Support people are only there three or four hours a day. One comes in the morning on M-W-F-Sat. She wakes me up, makes me coffee I sit in my bedroom for the next hour or so, drink my coffee, do my inhalers while she cleans, does dishes and runs to the store if I need anything. Then she makes me get up and walk on my treadmill for 40 minutes and has a breakfast smoothie or a pastry ready for me when I’m finished – so we’re really only around each other an hour or so. The other one comes Tues and Thurs she cleans, shops, does laundry and pre makes 4-6 dinners for the week. Again, I’m mostly in my room during the time she is working in the rest of the house.
It is very important to differentiate between Palliative Care and Hospice. While all hospice is palliative care, all Palliative Care is NOT Hospice. For more informatin see https://getpalliativecare.org/
September 30, 2020 at 5:34 pm #27492
@mendo-bruce this is very helpful information that you have shared. Thank you for providing your personal experience and highlighting the difference between Palliative Care and Hospice. Like Jen, I’m sorry that you are in need of Palliative Care but it’s good to hear how much it has helped you.
October 1, 2020 at 11:20 am #27506
I am happy that you are getting the help of palliative care. Yes, you are correct; not all hospice offers palliative care, and all palliative care companies can have different guidelines. I am sure that your information is helpful for Shannon and others about the differences.
I know that having them come out several days throughout the week is a great help for you. Thank you for sharing your experience. How long did you say that they have been helping you?
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