Update - and a good hospice plan

[gerbil runner]

Mom is weaker still, and is beginning to get confused. She can't eat more than a couple of bites at a time. The hospice nurse said her blood pressure is low and heartbeat rapid. It doesn't look good right now.

Mom, Dad and I all want her to make the scans on Thursday to find out whether it's disease or radiation side effects causing the problems. She had a chest x-ray last week due to a bad cold, which showed nothing of interest.

Now, normally a hospice program means that there will be no more treatment OR testing. However, the hospice organization we called has a program called "home palliative care" which will bring in oxygen, a nurse to help Mom bathe, social worker if desired, and made arrangements for ambulance transport for Thursday since Mom can't get down the stairs without help and it's getting too risky for Dad to try to help her down. We're hopefully getting a stair lift this week, but didn't want to chance missing the scans. They have great insurance which will cover it.

At any rate, under this hospice program, Mom still keeps her regular doctors and can pursue chemo if needed . It made us all feel relief to know we can get plenty of help without giving up hope of treatment, or at least knowing what is wrong. I wish there were more programs like it, for those who are in serious need of help but not ready to give up treatment options. No DNR required.

This agency also has a 10-bed inpatient facility for hospice only. 24 hours visiting, including pets. Four-poster beds and sleeping recliners in every room, and a common family area with kitchen. Nice to know if we need it, but we all prefer for Mom to stay at home.

My dad is upset, of course. They've been married 38 years. He lost his mom to breast cancer when he was only 13, so this also brings up sad memories.

We're still hoping that these problems are related to radiation, and that Mom will have some good days ahead.

[Addie]

Aw Jen....I'll be sending my best thoughts and vibes too, that this is radiation-related...and that your mom has some good time yet ahead. I hope the scan on Thursday provides the answers you're hoping for.

The hospice program you mention sounds wonderful....and very patient oriented to provide as much as they do without it necessarily being an end stage situation.

Will look forward to hearing the results of this next scan...continuing to hope for the very best for mom, dad, you and all of the family.

[Don M]

Jen: you all have my prayers.

[SDianneB]

Jen, my very best to you in thoughts and prayers -- and your entire family -- as you help your mother get through this.

Di

[Remembering Dave]

Jen, that hospice program is the best. Everyone should have access to that. Your poor Dad, this must be heartbreaking for him.

I pray that everything looks OK or at least is fixable on the scans.

God Bless,

Karen

[kimblanchard]

My continued prayers for your family. Its nice to know that there are such wonderful hospice programs out there.

[MilliBr1]

Keeping your mom and family in my prayers.

[kimblanchard]

Jen-

I've been thinking of you, and your mom. I'm glad you've got such great resources. I'm here if you need some support, just pm me. Hang tough, we're all here for you, and your mom. Hope she gets her strength back, and that this is all a brief setback. Take care of yourself, too. Nancy

[gail p-m]

Jen

Prayers that the scans go well. What a wonderful hospice program you have found! I do wish these were available to all.

Keep us posted.

Gail p-m

[Maryanne]

Hi Jen,

Yes, that is a wonderful hospice program. I wish they could come here and cook, clean and do laundry for me...

Seriousely, I pray your mom gets better real soon. Prayers going out to her along with your dad and you.

Keep us posted.

Maryanne

[gerbil runner]

Well, Mom was a bit better yesterday afternoon - perhaps the oxygen is helping. The nurse also placed a Foley catheter, so fewer trips to the bathroom are neede. Good thing, 'cause Dad's back is getting very sore.

Here's an excerpt from the website for the program my mother is on from hospice:

Palliative Home Care Program

Home & Hospice Care of Rhode Island's Palliative Home Care program offers practical help at home intended to comfort and support families and individuals living with a progressive life-threatening illness with a life expectancy of a year or more. The patient may still be receiving active treatment but has a skilled needs such as pain and symptom management. Palliative Care encompasses a broad range of services, including the basic components of hospice care. However, Palliative Care services are provided earlier in the disease process and are not limited by a specific prognosis.

Home & Hospice Care of Rhode Island offers Palliative Home Care to patients who may not be ready to stop disease-modifying therapies and who may have a more chronic, longer-term disease. Palliative Care services may be initiated at any time during the diagnosis and treatment process.

Care is provided in the home and in assisted living facilities. The goal of Home & Hospice Care of Rhode Island is to meet the specific needs of patients and families, improve the quality of life of the patient and to offer relief from pain.

The nurses have been absolutely wonderful, very gentle and attentive to Mom. She was very concerned that calling in hospice meant "giving up", but this organization makes it clear that treatment can continue. If only more programs like this were available...cancer treatments can be very difficult, and supportive care could make a huge difference in quality of life for the whole family. In some cases, such care may be the only way treatment can be continued! Nobody should have to choose between getting treatment and getting help.

[finster]

Jen,

I have followed your mom's journey, and I want to let you know that you and your family are in my thoughts and prayers. I really hope the doctors can figure out what's going on and that your mom can keep fighting.