Suddenly Hospice

Hzwife

I am in shock. My Husband's GP has been minimizing his health problems. DH is very thin with balance,  gait, and memory problems. It has been so frustrating trying to get a diagnosis and a care plan.  I requested an MRI and his GP said "his brain was aging." Last week I told his GP he was getting worse with leg weakness and not able to dress himself. I asked for palliative care. Monday I received a call that he had been referred for Hospice. 

Hospice told me his diagnosis is Frailty and presumed Alzheimer's. I didn't know that Frailty was a progressive syndrome. 

The last few years I've been taking a long list of new symptoms to his GP and being told, "Well he is getting older" I am so frustrated. I think a little heads up would have been helpful.

Faith,Hope,Love

Hi Hzwife.  Welcome to the forum.  I'm so you have to be here and I'm sorry to hear you got blindsided.  A similar thing happened to me.  DH had been diagnosed with dementia for approximately 1 year.  In October, we went for his regular appointment with his neurologist.  During the appointment, I told the doctor about all the new health issues I was seeing.  On his way out the door, the doctor said he was going to refer him to hospice.  I about fell on the floor.  Before I could catch my breath, he was out the door, and I was flabbergasted. The very next day hospice called and came out to interview us.  He was accepted immediately.  I agree with you, a little heads up would have been nice and I would have appreciated a conversation to go along with it.

But, on the plus side hospice has really helped a lot.  It's taken a lot of the pressure off of me. They send a nurse out weekly to check on DH.  I have access to an aid if I need help with bathing, dressing etc.  We're not at that point, but it's nice to know it's available.  They provide a chaplain and a social worker.  Also, they provide 24/7 coverage.  I've only had to call them once during a weekend, but they were very responsive and helped with DH's problem.  I don't have to go to the drug store anymore to get his meds.  They all come to the house via FedEx.

I hope hospice will all work out as well for you as it has for me.

Hzwife

Thank you Faith, Hope, Love. Yes, our experiences  were very similar. We were also interviewed by Hospice the next day and my DH was accepted right away. He thought they treated him very well and was impressed how prepared they were with medication and supplies.

I don't know if he realizes his condition is terminal. But perhaps we could ease into that conversation. 

loveskitties

There is no reason to discuss with LO that he has a terminal condition.  At this point in the journey there is nothing to be gained.

Ed1937

Sorry you have had such a hard time getting a diagnosis. But at this point, I wouldn't worry much about a diagnosis. I don't think there is much to be gained from it. Hospice should be very helpful for both of you.

toolbeltexpert

Hzwife welcome to the forum. I am shocked by how some md's lack of training or just to busy to really dx someone or refer. I am glad you have hospice help they are really a godsend.

Stewart

Faith,Hope,Love

Hi Hzwife.  My DH doesn't think he has dementia and has no idea that he is terminal.  I agree with the others that there's no need to tell him.  In my case it just gets DH agitated. We don't say the word hospice around him either.  The hospice folks have agreed, and we just call them home health care workers.

Lgw

I wish my DH had put him on hospice.  I have had to struggle for every bit of help. We might not have had to go through aspirational pneumonia had we had someone checking up on him regularly.

Hzwife

Thank you everyone for your replies and advice. 

I decided to tell DH gently that his diagnosis was a progressive illness. We talked about him getting weaker and sleeping more. He always said he had things he wanted to give away before he passed and I suggested he may want to do that now while he has more energy. I'm not sure he will remember our conversation, but that's okay too. 

Hzwife

Lgw,

 I am so sorry.

 Will hospice reevaluate your DH since he has had aspiration pneumonia?