How can we find hospice care in our area?

Kehala asked...

We live in a rural part of fulton county, pa. (near hagerstown,md. berkely springs, wva. and chambersburg,pa.)There isnt any hospice in the immediate area but there are hospices in the areas I mentioned above. My 80 year old Mom and myself are my Dad's primary caregivers...he is mostly immobile (we get him up in the morning from the hospital bed and get him into his recliner...we are caring for him at home) He suffers from lewy bodies dementia,hip replacement,back surgery and parkinsons. He cant vocalize enough to tell us when he is in pain (in fact he doesnt vocalize much at all-he is mostly just a shell of the incredible man he was) He has trouble swallowing and we puree everything he eats and have to thicken any liquads he drinks. Anyway, I was wondering how to find hospice care close to us? Do I have to contact a hospice in our state or can it be the closest to home? How do I know if it's time to contact hospice? My Mom fell two weeks ago and broke her knee cap so she is immobilized from her hip to her ankle but she is still trying to do everything...I think we need some help-I just dont know where to turn...any suggestions or answers would be greatly appreciated!

Expert Answer

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

It certainly seems like you have your hands full! Caring for your mom, as well as your dad, would be overwhelming for anyone. I am not sure you can find a hospice near you, but I have included a website at the end of my post whose specific purpose is finding hospices.

The first thing you might try is having your dad's doctor suggest nursing homes, or "memory units" in your vicinity. These are really facilities that cater to people who have dementia, and they provide a safe and nurturing environment where your dad would have all his needs met. This would also allow your mom time to concentrate on her own healing without having to care for your dad, too.

Lew Body Dementia is a terminal type of dementia that robs the person of his ability to care for himself, speak, ambulate, and ultimately even swallow. I feel that since you are pureeing his food, you have received some education regarding making swallowing easier. But, he will eventually not be able to swallow safely; when that happens you and your mother will need to make some quality of life decisions in the form of an Advance Directive. Hopefully, you may already have one.

Many times families try to care for their loved ones at home. This is honorable and usually works for a while. But soon, as you are observing, care becomes too much to handle in the home setting. Begin to "check out" what is available around you. You also need to know that hospice is basically care in the home setting with education and support from the team members. Your dad may need more care than can be provided at home at this point. If there are no hospices in your area, or a nursing home is not a realistic option for you and your mom, reach out to your church and community. Many people are struggling to cope just like you.

I would like to refer you to a wonderful website provided by the National Hospice and Palliative Care Organization. This site provides a resource for caregivers called "Caring Connections." Go to www.nhpco.org and click on Caring Connections. I'm sure you will find it helpful. Regarding finding hospice care near you, try www.mywhatever.com/cifwriter/content/20/nhpc1291.html, also provided by the National Hospice and Palliative Care Organization