Update to Called Hospice

JoseyWales

Hospice visited yesterday. They immediately qualified him. The doctor also reviewed his medical records and gave him a diagnosis, which he's NEVER had. We're to the point of hospice, 8 months in memory care, and no one had ever given him an actual diagnosis. The best has been "Presenile dementia", which I suppose says it all.  The hospice doctor said Alzheimer's, so that's officially in his records. They told me that's what will go on his death certificate when we get to that point. Of course, I'm not 100% sure that's the type of dementia he has or what it started as, but as stupid as it sounds getting someone to put something in writing is huge for me.

I was given lots of information about how he's doing that I just hadn't been getting before. Nothing that changes what I'm doing, just my understanding of the disease and how it's affecting DH right now. 

They are keeping all his meds in place (he has no other medical problems, all meds are for anxiety, seizures related to the dementia or muscle contractures). They're adding Ativan for his continued anxiety that we're still seeing. I'm happy for that, because I see him so anxious so much of the time.

I asked the horrible question about a timeline for him. She guessed 3 months, with the usual "we can't know".  But 3 months was less than I expected to hear. She's worked for hospice a long, long time, so I'm thinking that her guess is probably an accurate timeline.\

Ed1937

Josie, it sounds like you finally have someone in your corner. That's huge! Just remember that three months is a guess. It might be 6 months or a year or more. But the big thing is you have the help now. I'm happy for you.

Beachfan

One day at a time.  Thinking of you; praying for all of us.

JoseyWales

Beachfan - I was thinking of you yesterday when I was with DH. We're following so close a timeline to each other. I hate to think that others are dealing with the same thing, but in a way it gives me strength to know I'm not experiencing this alone.

Ed - Thanks for always being here.

Marie58

Josey, I'm sorry you're at this point, but hospice will be a huge support to both of you. I'm surprised they gave you a timeline. The clearest I've ever gotten was something like, 'it could be soon but not sure if it's weeks or months'. That was a couple months ago.

Blessings to you both.

saltom

We are on a reevaluate after 90 days Hospice schedule, but DH is on for heart problems rather than dementia.  I do like the extra help now and DH has been compliant with the health aid showering him weekly.  We've also gotten chair cushions and other supplies that make life easier and more comfortable for both of us.

Mint

Josey so glad you are getting help.

Quilting brings calm

Josey- I’m sure it was a shock to have him accepted so quickly and to hear that timeline.  It is  hard to hear that news  at any time of year, but heading into the winter and the holidays must weigh on you too.  Of course, you may just be numb at this point,  or trying to process different feelings. Whatever you feel, it’s okay that you feel it.

Battlebuddie

   I’m happy for you!  I think you are really going to like hospice. They give great medical care. That’s enough right? Then you add on the freebies and it is great. But my favorite thing is just to have the nurse to talk to once a week! She has become a friend over the last year. Im going to miss her when she leaves. Ironically , I feel very close to her, but if I ran into her at Publix , I wouldn’t know her because she has always been masked . 

   When my husband went on hospice they were thinking about 6 months or less. But here we are a year plus so don’t hold them to it. They have a way of caring that can “ Stabilize” them.

caberr

I'm glad you are getting hospice help.  Sounds like your DH and mine are similar.  We weren't given a timeline but was told to prepare myself and the same we don't know.  He also has no other medical conditions but is on the drugs to keep him comfortable.  The weird thing is that now he looks me in the eye, and I see him in there.  

I know it's not easy

French

Hi Josey 

Strange for me. I was thinking we were following you but now it is the contrary.

Yesterday I called the geriatric dr because after more than 1 month I needed to be sure of something. When she evaluated my partner, on sept. 10th she told me the disease was very advanced. I thought , « yes he is now entering stage 7, it is very advanced ». But after his death I thought that perhaps I hadn’t understood well what she told me. I needed to be sure.

So yesterday she confirmed that at this moment she couldn’t imagine he would degrade so quickly but she was thinking to 3 or 4 months (I was thinking 1 year or more in stage 7) and wanted to find solutions to soften this period. But as when he arrived in France they restarted all the medication from the beginning, the med for epilepsy was low and the very long epileptic crisis definitely shortened his life. 

So you were smart to ask for the timeline even if you know it is just an indication. I didn’t and certainly misunderstood the situation. And keeping all your DH meds that have been long to adjust is certainly crucial.

I don’t know what to wish you, but you get help and it is already a huge progress. I hope they will also help you. Don’t forget yourself in this period, it is also important. I know that we have forgotten ourselves for long when we arrive at that stage, but you certainly need. Take all what is proposed from professionals, family or friends.