DW has been placed on hospice

Vitruvius

It was just a week or so ago I posted about my DW being in an MCF for six months.  I talked about her unusually rapid decline. Just since that post my DW has taken a turn for the worse.

My DW has just been accepted for hospice.  DW's MCF was seeing some new decline and medical issues so they contacted DW's neurologist (with my consent).  During their conversation the neurologist suggested it was time for hospice and ordered an assessment.  I met with the assessing nurse and he said DW was well within the criteria for hospice.

DW did not have weight loss and her weight was stable for months.  However the nurse cited several factor under which she qualified.

1. DW has begun having problems swallowing.  She is pocketing food in her cheeks and holds liquids in her mouth for 5 or 10 minutes before being coaxed to swallow or spit out the liquid.  She is apparently forgetting the act of swallowing. This was the neurologist's biggest concern. 

2. She is just starting to sleep a lot during the day as well as the night.  My DW was never one to take naps, and did not do so at the MCF until about a month ago.  Now she naps or rests in bed much of the day.

3. She can no longer ambulate without the assistance of at least one aide and can only cover short distances with very tentative shuffling steps.

DW's neurologist had wondered if silent seizures were responsible for her continuing rapid decline and had tried several anti-seizure medications. One of the issues the MCF was concerned about was that DW was having nosebleeds and wondered if it was the medication. The neurologist wasn't sure of that, but also saw that the medications did not seem to be providing any benefit and so is tapering her off of them.

The recent post about not being a monster really strikes a nerve here.  DW's advanced directive already limited medical interventions and ruled out any type of permanent artificially administered nutrition.  Yet updating her POLST (Physician Orders for Life-Sustaining Treatment) drove the point home.  If she continues to "forget" how to swallow, I will have doomed her to dying of aspiration or starvation in order to end her torment.  This is extraordinarily troubling for me.

I am especially troubled because she shows no signs of pain. DW is increasingly detached from reality but she is often in good spirits and I can easily get her to smile and chuckle. It just doesn't seem like her time yet. Much as I hope she does not suffer long, I am not really ready to see her go. It may be quite a while yet, I know that some PWD are on hospice for a year or two. Some even recover enough to get off hospice. But the act of being on hospice bears a foreboding that I just can't get past.

Ed1937

Vitruvius, I'm so sorry. When my wife was in the hospital, I told them no surgery. And I felt like I was playing God. I didn't like it one bit. Prayers coming for you in the coming days.

Beachfan

Vitruvius,

I, too, am sorry you have reached this point.  Although inevitable, it is both frightening and heartbreaking.  I follow your posts faithfully, as your DW and my DH are following similar paths.  DH still eats voraciously (he is fed), and his swallowing is unaffected for now.  But everything else that you describe with your DW is a mirror image of DH. (Excessive sleeping, inability to ambulate independently, total detachment from reality with no reaction or engagement with others.). He takes no medication at this point; his medical care is limited to an annual physical exam and observation by the MCF nurses.  I expect a Hospice recommendation may be on the horizon, sooner, rather than later,  and I suppose that will be the next big hurdle to face in this long, long goodbye.  I will be thinking of you; stay strong, best wishes. 

loveskitties

Vitruvius,

You mention your DW's advanced directive.  It sounds like you are following her wishes, not yours.  As hard as that is, we have to respect them.

My father was in much the same condition, when an ER doctor finally got my mother to agree to hospice, even though his AD was very specific about his care in those circumstances she didn't want to give up hope.  In his final days he was at peace with the care he received.

It is so very hard anticipating the end for a LO, but the release from their torment of this terrible disease is a blessing.

Joydean

Vitruvius l’m sorry, but so glad that you are the one she will still smile for and as you said a little chuckle. I’m sure those smiles are what keeps you going for now. Prayers for you and your sweet wife.

Elshack

My DH who is in memory care was placed on Hospice as the ER physician suggested. He had a few episodes of a seizure and was taken to the ER but recovered  within a few minutes. Shortly after he was pocketing his food and hospice suggested they puree his food which the chef at memory care does. I sit with DH for supper and he eats his pureed food. He had had a few choaking problems but no longer does. You may want to suggest pureed food for the main dish or pudding or sherbert for dessert. 

I am glad he will no longer be taken to the ER but the hospice nurse will come to memory care and check him. Obviously if he fell and was bleeding profusely they will have him stitched up at the ER. He has a DNR order. This pureed food has worked out well. He looks at his plate and says What is this stuff? I happily tell him .. oh look. It is cheese and sweet potato fries! I do not eat anything when I am with him and a fellow resident eats the regular meal but DH doesn't seem to notice. 

DH has been sleeping alot more than usual. He is still ambulatory with his walker. He has been in memory care for 7 mo.

Battlebuddy

   Hospice will be really great for you I promise. Think of it as just another support system involved in your wife’s care. Another set of eyes . They will be there for your loved one, and for you. 

   My husband has been on Hospice for a year and a half. At first it is sad because you have reached another stage. But it doesn’t mean what it used to as in 6 months or less till death. 

   I also wanted to address the swallowing. My husband has had swallowing issues the whole year and a half of Hospice. In our case it hasn’t been a linear thing. It didn’t show up and then he just quit swallowing well. It’s much more hot or miss- one day struggling  and then a couple good days.One meal struggling and then the other meals he would be fine. Sometimes he can’t swallow for hours.  He has had bad weeks and then a long period where he swallowed fine. That has been our experience but everyone is different. Most of his struggles are with liquid. At some point it could become permanent but for now we just work around it.

Vitruvius

Thank all of you for your responses. Elshack and battlebuddy, your direct experiences are reassuring that maybe it's not as bad as I might fear.

Elshack

As fate would have it, DH had another one of those seizure like events where he drools, is not responsive and listing to his side. Thankfully he is on hospice so they no longer take him to the ER. When I visited him today he had just had this happen. They on the directive of Hospice gave him one ativan. He seemed ok after a few minutes . I am very greatful he is on Hospice as this same thing happened pre hospice on Dec 24 and Jan 10th and I had to spend 10 yrs total in the ER. As it was then they did not do anything for him. Once again I suggest getting a hospice evaluation. To me it has been a life saver for me!

Cherjer

Dear Vitruvius...I am so sorry for hearing about your DW and all the struggles you have been going through.

My DH is at home and it has been almost 10 years when he was diagnosed with AD. My goal has been to keep him home and so far so good BUT have caregivers here now to help me get him up in the morning and to bed at night. DH sleeps at night so no need at this point for 24 hour care. About a month ago decided to have Hospice and have NO regrets about that. Wonderful care with more eyes and with myself, caregivers, and Hospice I firmly believe I can keep DH home until the end. Our day is getting up, walking, eating, walking, nap in a chair, eating, walking etc. He is not able to talk, watch tv etc...but when he opens his eyes I know he can tell what is going on. At the end of Feb we had a sibling reunion and all gathered at our hoe in CA...my family believed he could hear what was going on but of course could not respond. If I cannot take care of him until the end I will certainly make changes. We all have to make our own decisions, and for me having DH with me is the best decision. I accept he cannot talk and gets a little agitated at times (actually has been less agitated in the past) and am glad I did not listen to people who wanted to put him on meds that caused severe agitation. Our LO need us to advocate for them. YOU make the decisions! 

Norm 22

Dear V.  My wife has been in memory care since May and on hospice, at my request, for 3-4 months.  Her doctor told me it means more eyes on DW. Hospice provided her with a hospital bed, a nurse aide 5 days and a RN visit 2x week.  The RN sends me regular updates. They are focused on patient comfort.  Hospice is a good thing as it will provide additional support.