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Where Is The Emotional Support for Adult PH Patients?
Someone expressed to me recently, that they feel there is little assistance available for adult PH patients. It’s not just a lack of financial assistance, but also emotional. Some of our adult patients who are not able to get around easily, are feeling lonely at home. Some have reached out to organizations or even churches, without a proper response, or they don’t know who to reach out to.Do you know of organizations who do a good job with outreach? What advice would you give to someone in need of some simple companionship?
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17 Replies
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Hi Colleen,
I have found that the nurse case manager for my health insurance company does a good job at helping me find different organizations or support emotionally. There is a behavioral health line that I would also be able to talk to if needed or if I was in need of emotional or behavioral support. If someone is home bound and if they have a home nurse, many companies also provide behavioral health support and will send someone out to the house as a therapist or social worker. Social workers can also help find different organizations. I would make use of any social workers affiliated with hospitals or your treatment team (sometimes they have their own social workers that work directly with a specific team with other patients with the same condition) -
Thank you, Brittany. I will pass these suggestions on. I thought about the social workers but not the nurse care manager…good advice. I wonder what is available that is less “clinical”. I think what people want sometimes is just a friendly visit.
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Colleen,
I totally get it. They should have something like a “best buddies” program but for those with chronic illness that may need some cheering up in the hospital or at their house. Even someone that could just bring them a special “pick me up” treat once a week and spend some quality time with them. -
Unfortunately, many available support options seem to be available primarily to those with insurance. Perhaps Chronic Care Management programs, covered by Medicare, could extend to emotional support.
There is no one size fits all. We should each learn how to and cultivate our own personal support networks. The more networks you are in — and as an active participant — the better. PH and other special topic forums are,to a large extent, ready made support networks to supplement but not replace personal networks. PLAN (Planned Lifetime Advocacy Network), which is about helping “families create a good life for people with disabilities,” has some good ideas about how to do this. Start by identifying priorities and taking an inventory to identify existing networks.
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Vanessa, thank you for that information. I had a child with PH and I don’t know what I would have done without the various networks, especially the on-line support groups. I would think that participation would be just as beneficial for adult PH patients. There are lot’s of options out there and it’s just a matter of finding your niche. Hopefully, our PH forums have become that special place of support and encouragement for many.
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Brittany, my thoughts exactly! I’ve also thought many time that there should be a Make-A-Wish for adults. Wouldn’t that be awesome if there was?
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I found local support groups through my Doctors office and Clinic. They had signs posted up for oxygen users support group. It’s mostly people with COPD. But still a good group to meet and talk to people. Most of the time I have noticed people don’t ask for help or tell anyone that they are lonely. I do this myself sometimes. I would rather stay quiet but it only makes it harder to reach out. Also local Area on Aging Centers can be a great resource. They offer meals, weekly activity’s and other services. The YMCA has been a huge help to
My oldest son, who has Autism. Most local areas have a phone number you can call for groups, or just any kind of help. Even free food! My area it’s 411. Other towns I have lived in it’s 711. And whoever needs help , don’t feel ashamed or embarrassed! I am the first one to cal and get free food if I need. Times are tough! And loneliness can be the worst feeling in the world! -
Oh and a big place for support is the Salvation Army! They have some of the most kindest, caring people who are willing to help. Sorry but I can’t believe I forgot to mention them! Lol they also have great church services. And offer monthly cooking classes. They even pick me up. In case you can’t tell, I am eating real food again and am always hungry. Lol
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Hi Shannon, it’s been some time since I’ve caught up with you. It’s great to ” see ” you. The Salvation Army is a great place that offers many services within the communities.
I hope that you and your family have A Merry Christmas if I did ” see ” you before then. Take care.
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Great topic and suggestions here. I know that in some areas, the Meals-on-Wheels offer a visit for “shut-ins” and these usually deliver daily or weekly depending on the area. I know many other communities offer help, too. I found this online which does include most services available to elderly patients. Some of you are not elderly, so I know not all will apply.
I know my insurance plan offers a wellness helpline and also behavioral help online in some areas. I also know that there is an organization similar to Make-A-Wish for adults. I will look for it and share it when I find it again. I saved it for a PH patient who was dying years ago to see if they could help her. They did, she saw her family before she passed away.
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Vanessa,
you are certainly right that there is no “one size fits all” for how people manage their illnesses and conditions and what works or doesn’t work for them. I know many people (including myself) that benefit from one on one talk therapy. There are others in my friend group and even part of my family that would not benefit from something like this and would rather talk to a group of people to receive support. I enjoy small groups and get togethers with others with similar conditions to me because it helps to “normalize” illness in a way and makes me feel less alone. -
Jen,
I always thought that there should be programs like “Make- a – wish” for adults with chronic illness and rare diseases, especially when we are usually in a tough financial spot most of the time. Something so simple (even if it’s not a big vacation) really could make our lives so much better. Like being able to see Carrie Underwood this year made me entire decade of life!!! -
Shannon,
I am so happy for you that you are back to eating “real food” again ! You probably do not take that feeling for granted and especially that feeling of being full that many take for granted every day. It is one of those things that is on my “privilege” list that wasn’t there before. You are right that the salvation army and other church groups and organizations can be very supportive and understanding and offer a helping hand! -
@brittany-foster and @jenc, Team PHenomenal Hope has an “Unmet Needs Patient Impact Fund,” not emotional support nor quite a Make a Wish for Adults but PH specific. There is, however, a de-isolating effect in how #LetMeBeYourLungs teams PH patients with athletes to raise funds for research and unmet patient needs. Maybe someone in this forum has an unmet need the fund could address or would be interested in partnering with an athlete racing for PH. (Disclosure, I’m not without bias since my PH doc, mountain bike racer Patricia George is a co-founder)
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Thank you everyone for the wonderful suggestions. I’m familiar with some of these but not all. @jenc I would love the name of the organization that is a Make-A-Wish for adults. I can think of several other places that help a lot too, such as Catholic Charities, Knights of Columbus and even teen youth groups that offer a lot of support and do great things as volunteers.
There are a lot of good people in this world who are ready to help but it does often require speaking up and asking for it. As has been mentioned, doctor’s offices, insurance companies and a glance around one’s own community often offers suggestions to meet your needs.
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Hi Jen!! Thank you! And I hope you and your family have a great holiday season. And that it’s relaxing. Merry Christmas!
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Vanessa,
I am sure that this is a great organization to look into and I will have to look into it. That is great that your own doctor participates in this. What exactly do they do ? Are they an athlete as well? I really like all the awareness that foundations like that for athletes helps to bring. It shows that they are really getting out into the community and trying to make a difference.
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