Just assessed for hospice. Year 21 from symptoms beginning. FTD.

HeartbrokenDeb

I haven't posted in a long time, but thought I would share that today we had our hospice assessment and we were able to get approved. A great burden has been lifted. We have chosen since the beginning to keep him at home if I could provide the best care. So far, it has gone pretty well I'd say. We are getting close and he will remain at home with me where he is comfortable, safe, and loved.

I have been hesitant to request an assessment because the guidelines that are in place are stringent for dementia and my husband can speak more than 6 words. I wasn't sure we would qualify, but I know where we are at and that we don't have much longer so I did it anyway because we need more services. I want him to have each day be a quality day. I want peace of mind each day knowing I'm not doing this alone.

We were in an all inclusive program that supposedly includes hospice but they were ignoring where we are at (I believe services and staff are being stretched because of COVID-19). As a DPOA and advocate for my DH, I had to do what was necessary to get what we need. 

So I called the best local choice for hospice (well established, highly rated, taking new patients) and asked them questions. They asked me questions. They had a nurse call me back and explain what hospice is and what it isn't and answer questions about DH's history and current health concerns. They were quick to set the appointment.

I was quite surprised that they didn't really examine my husband, it was more about his medical history and level and speed of decline.

Our current program won't release us until 1-31-21 (probably all about the money), and then we can start getting the services and help we truly need. I'm just praying nothing serious happens over the next 3 weeks because they won't be there for us as history has shown.

June45

Deb,

Did I read that correctly...you have been living with this for 21 years? Oh my! I am glad that you will be getting some relief so that you can enjoy the time that you have left with your husband.

M1

Glad and sorry for you at the same time.  I know that must feel like a huge step, but the right thing to do if in fact you get the help you need.  Sounds like you're doing it just right Deb.

HeartbrokenDeb

@m1 @june45 Thank you so much.

zauberflote

Deb, what a long difficult path you have trod. I'm glad you can finally relax into hospice. 

My experience with hospice/dementia had nothing to do with speaking 6 words or fewer. Medical history, dementia history, and a private interview with the admin RN. Once that interview was done (next day after I called them I think, but this was June 2019), their MD approved the nurse's recommendation,  and Mom's coverage started the next day. Mom was in a small MC that had close ties with a couple of hospices, and one of them was the one I called, from previous good experience. Mon was on hospice for 8 months. They were so good to her, and to us her children. 

HeartbrokenDeb

zauberflote, I have heard nothing but good about hospice so I'm looking forward to it. It's too bad that with our COVID-19 numbers too high in my county, no volunteers are allowed at this time. I will take what I can get. We've been hermits since March 15, 2020.

ElaineD

Dear Deb.   You indicate in the information accessed through your user name that your husband's signs of dementia first appeared in 2009, that is 11 years ago, not 21.  Although I am sure it feels like 21!

I hope a good MC placement will bring relief for both you and your DH.

Regards, ElaineD

Nonna24

I am taking my husband to the dr tom to see about hospice services. I’m not sure if he will qualify yet. He does say more than 6 words however he is totally dependent on me. I have to bathe him, shave him brush his teeth. He is 90 percent incontinent. He can feed himself to some degree however at times have to help him with that. Is getting shaky on his feet. Has had several falls. Have to help him occasionally with walking or getting up and down. I am hoping that he will qualify. I honestly could use the extra help and support!!!!

jfkoc

It seems there is no hard fast rule about Hospice. I know I simply called one. They came out, visited a bit and we were in.

I found them as helpful to me as they were my husband. We changed agencies once due to a staff change.

Ed1937

Deb, I know it seems like a long time to wait, but I'm glad you got approved. It should be very helpful.