I requested a hospice evaluation for DH and it is unsettling

LadyTexan

I mentioned in recent posts that DH continues to decline. I realize it is the nature of the disease. Alzheimer's goes from bad to worse.

I messaged the PCP. I provided my recent observations regarding ADLs and stated that DH has been falling. The PCP wrote a referral for a hospice evaluation.

I know hospice is an option to get assistance in care if DH meets the criteria. I know it doesn't mean DH has a foot in the grave. And yet, it is unsettling to me to be at this milestone. 

Logically, I know hospice would be helpful. Emotionally, I am feeling scared because it might be time to bring hospice on board. I have tears in my heart.

jfkoc

It is a milestone...a jarring one with some hard reality. I remember.  I told my husband it was a new home health benefit from Obamacare. Maybe that idea made it easier for me too.

Do interview different Hospices and see how you feel after that.

Ed1937

I haven't been there but I think Judith hit the nail right on the head. I'm sorry it's so hard.

Battlebuddy

   It is definitely unsettling. It’s one of those milestones where one part of you will be happy and relieved if he qualified ( it’s like the cavalry coming over the hill) But the other half of you will be scared and sad. I cried from the relief that I had made it to Hospice and I cried from sadness too. 

   But then you just get all that great support and they become part of the care team . We went on Hospice August 8 , were  renewed three months later, and should be renewed again next month. As long as he keeps declining he can stay on.

Jeff86

LT, I am sorry.  This is a significant milepost on the AD road. 

I can imagine that maybe you’re not really surprised at this turn of events, that you know in your heart that you’ve arrived at this juncture.  But this external validation gives it a heart-stopping reality that is difficult to process and impossible to argue with.  

We are holding your hand, virtually, as you continue to walk this road.   

M1

What a tug at the heartstrings LT, but I hope it gets you at least some of the help you need.  Sending warm thoughts.

fayth

My DH is still at home, and has been enrolled in hospice since September 2020.  We've had their services for 16 months now.  I can hardly believe it.  I've been keeping vigil for so long, and I'm exhausted.   Hospice is a significant milestone, and having the external validation of the hospice team makes this terminal illness more 'official'.    I'm so grateful for the help and support they've provided.  It would have been much harder to have him home without their help.  I've considered placement along the way, but in Sept 2020, when we were at a turning point, the pandemic made visiting in facilities so hard, that I knew I had to try caring for him at home.  I'm glad I've been able to do it for so long, but I'm always wondering how much longer???

Joydean

Lady T, hugs for you! May God give you strength and courage, which I know you have! May He wrap His arms around you.

Buggsroo

Lady T,

You have been incredible in caring for your husband. I think that Hospice care is just another facet in that care, they will be able to give your DH care that maybe you can’t and you can have some much needed respite.

I found when I was dealing with officials vis a vis my husband, I felt I was doing a good job, but there are so many hours in the day, so many things to do and there is a pride in doing the job of two people. I am starting to let go of perfect, so any help is welcome. 

I wish you peace in your decisions in dealing with these new developments.

ButterflyWings

LT, I understand completely! For me, I was very anxious for DH to qualify for hospice support even if he later stabilized and graduated off of it temporarily as we were going down fast and I knew that help was available and could likely improve our day to day quality of life, as well as help prolong his life. It has. 

Getting hospice on board was the only way to stop the weekly ER runs that palliative care had started sending us on, when his recurring UTIs triggered worse infection and sheer chaos in his behavior. That, plus weakness in his limbs, double incontinence, falling (yes our firefighters came out to rescue a few times not long after my birthday too, come to think of it.) 

Still, immediately after he was assessed and qualified, yes a wave of second-guessing combined with fleeting fear swept over me. I knew it was time, but was I really ready for what that meant at some point? That out-of-body experience feeling came and went pretty much after they brought all the equipment (a flurry of activity within 24 hours, set up the bed, laid two VERY helpful floor mats that have prevented injuries in his subsequent stumbles, and more stuff). 

I understand what you mean. I had to process that odd combination of relief and gratitude for the blessing of qualifying for hospice support while wishing with all my heart that he/we didn't need it.  But the cavalry coming over the hill allowed me to exhale too. The team is a huge support. We'll be thinking of you as always. What a great wife, advocate, and caregiver you are.

Mint

LT I’m very sorry.

White Crane

Dear Lady T, This is indeed a milestone...a very sad and jarring one.  My prayers are with you.  Sending love and hugs.

Brenda

Marie58

It is unsettling to even consider it, as you said. I felt the same way. This disease only goes one way.

DH has been on Hospice for almost 4 months. It is indeed a blessing!! Every week DH gets 2 bed baths by a caregiver, 2 visits by the nurse, one visit by the chaplain, and one by the social worker. They are also just a phone call away if I need them or have questions. They provide his hospital bed, a special air mattress to prevent pressure sores, a bedside hospital type table, briefs, wipes, lotions, meds they prescribed, and more. Today the nurse asked if I'd like a volunteer to come once per week just to visit DH since social interaction is limited being bedbound. 

Blessings, peace and strength to you both as you continue on this journey.

LadyTexan

Thank you all for your support. DH did not meet the hospice criteria because he currently speaks more than 5-6 words coherently and comprehends what is being discussed (Stage 7a). Based on my observations, DH demonstrates other Stage 7 symptoms. Specifically:

• Sub Stage 7c: Non-ambulatory – I am now using a transport chair to move DH around the house. He can not stand or sit or walk without my assistance. 
• Sub Stage 7d: Unable to sit up independently – I must assist DH when he is trying to sit up. I can not leave him unattended as he has a tendency to slide down the chair or lean to the side. 
• Sub Stage 7e: Unable to smile – he doesn’t smile. I don’t know if he has tried.
• Sub Stage 7f: Unable to hold head up – his posture has declined. He cannot sit up straight or standup straight. But he has some ability to lift is head up. Although he generally just lets it hang down or flop to the side.

Amazing that yesterday I was scared we would qualify for hospice, and NOW I am frustrated that we did NOT qualify for hospice. I will contact another hospice provider to see if they want to assess DH.

I have messaged the PCP. An order was written for Palliative Care. I don't know what that means yet.

Jo C.

Lady; I am truly so very sorry.  It really is a difficult place to fine oneself; I remember that all too well.

On the other side of the coin; I am also sorry that your husband did not get accepted to Hospice.  What it appears to have happened, is that the RN doing the screening was using the "dementia" criteria to get him to fit acceptance into Hospice.  That is the diagnosis that requires not being able to speak but only a few words. 

Not all Hospices are the same; some are far more beneficent than others.  In both my professional and personal experience, the larger entities are by far more generous than the small Mom and Pop entities.   NOTE:  It is not that frequent to have a LO admitted to Hospice with a primary admitting diagnosis of, "Dementia."  The criteria for that is so terribly strict (and outdated) that many patients never make it in.

It is also true that some Intake RNs are far more skilled than others.  Many patients who have dementia are not admitted with that specific diagnosis . . . . they are admitted with other diagnoses pertaining to their co-committant conditions whether heart, lung, etc. or failure to thrive and others.   There are multiple possibilities.  If I am recalling correctly, your husband has multiple health issues.

You may want to try another Hospice.  If you have another to come out and assess him, I would not state that he was turned down by a different Hospice unless they specifically ask you that question.  You can, if you wish, contact a couple of Hospices and ask to speak to the Supervising RN. If the nice person answering the phone asks you what it is about; simply state, "It is personal."  Hospice almost always respects  that and will transfer you to the Supervisor.  When speaking to the Supervising RN; ask about their philosophy of care, the way they schedule; after hours availability, etc. to set the tone . . . . then discuss your husbands particular condition with her/him and if comfortable with what you have heard, ask them to come out for an assesment.   

Hospice will assign "benefit periods" for Hospice services. At the end of each benefit period, the patient is re-assessed for continuing need for Hospice.  Very often, the patient will be accepted for the first benefit period and will be closely re-assessed at the end of that time to ensure that Hospice need is still present.  There are two initial 90 day benefit periods when first admitted to Hospice.  After that, each benefit period will be for 60 days and continue on without end as long as the patient continues to fit Hospice services needs.   NOTE:  We have had Members here whose LOs have been on Hospice for one to two years.  Truly.

Anyway; probably more than you wanted to know, but that is how it works.  If it is still the same, if you find that the particular Hospice is not a good fit or deficient in their services, you can change Hospice providers once in any certification period. Ask for that to be explained when you sign on.  If you are assigned an RN or aide that is not a good fit, you can request a change; Hospice is usually quite open to doing that, no harm no foul.

After you catch your breath, you may want to try again.  Sending best and warmest of thoughts your way,

J.

abc123

Dear Lady, I am shocked that he was not admitted to hospice. I have been following your recent post as closely as I can, I know about his recent falls and other declines. Please keep calling different hospices. I think you’d be pleasantly surprised at the improvements possible in him with the interaction of the right hospice staff. 

As always, you are both in my prayers.

Judi57

LadyTexan wrote:

I have messaged the PCP. An order was written for Palliative Care. I don't know what that means yet.

Lady Texan,

My husband has palliative care through hospice.  It is not that exciting, if you want my opinion.  You still have the ability to call the hospice center for advice and help, but you don't get all the benefits that you think of when you think of hospice care.   My husband has a nice nurse practitioner who visits him once a month, does all the vitals, and will sit and talk to him for about 10-15 minutes.  He does monthly reports to the doctor.   The one advantage I saw was that once he declines and needs the end-of-life care, he is already enrolled in the program and won't need an assessment again.  

Judi

LadyTexan

Thanks all. 

Yesterday, I contacted another hospice agency. They are connected to the home health agency that provided OT, PT and nursing when DH was discharged from the hospital in June. We met their hospice rep at that time and he provided an overview of services then. Their hospice is at capacity and cannot take on anymore patients. The employee I spoke with WENT WAY WAY ABOVE AND BEYOND to help me. He shared with me much of the same information that Jo C. included above. He said some agencies are stricter than others and some nurses consider the symptoms more comprehensively. Experienced health care professionals are aware that DH's Alzheimer's symptoms are not consistent through out the day, e.g., sometimes he is more alert, sometimes he is more balanced, etc.

This angel of an employee (at the hospice which was at capacity) said he knew I needed help and would not leave me hanging. He reached out to another hospice and connected me to an agency that was eager to help. I was very upfront with him and the agency that was eager to help. I felt this was important to not waste their time or put DH through an evaluation that would result in another denial. I have not told DH I am trying to qualify him for hospice. I have told him that I am trying to find additional services for us.

DH does not have stage 7a symptoms. HOWEVER: DH cannot independently perform any of the 6 ADLs (Ambulating, Feeding, Dressing, Hygiene, Continence, Toileting). This is a significant decline. Last week he was unsteady, but was able to ambulate. Now I move him around in a transport chair. I am lifting him in and out of the chair. It is only a matter of time before we are both injured badly. Last week he could eat with his fingers. Now I am feeding him.

So, I am working with the eager to help me agency. I will message the PCP and the geri-psych via the portal. Palliative care is better than nothing, but they seem to be suggesting a bandaid when we are bleeding badly.

Thanks again everyone. I appreciate you more than you know! I am advocating for DH and working hard to get services in place. Meanwhile, I am keeping DH clean, content and calm. I am tired. Why oh why is the healthcare non-system making this harder than it has to be?

abc123

New Century Hospice

Austin, Texas

512-342-8288

Ed1937

Lady, isn't it great when you find someone who really goes the extra mile to help? I think this used to be the norm, but not anymore. I'm glad for you, and I hope things proceed smoothly.

Kenzie56

My MIL was in a MC facility (age 95) with Lewy Body Dementia. In January 2020 I contacted hospice and asked for an assessment. She was losing weight, not speaking, and I could tell she was going downhill. She did not qualify for hospice services because she could walk with a walker and even though she wasn't eating much, she could still feed herself.  By May she had lost 30 pounds, started falling out of bed, and was not hungry. She was finally approved for hospice services on May 4th. Right after that, she fell and broke her hip on May 7th and passed away on May 22nd. I wish I had pushed harder for services earlier. My parents had hospice services for cancer and they seem to go by different criteria - or perhaps that was just Florida. I felt the organization I used here in Virginia said she wasn't sick enough from January - May even though she had an RX for hospice services from her PCP. She wasn't incontinent, could hold a fork, could walk with a walker, but was totally out of it (couldn't speak and was having trouble swallowing) and getting weaker by the day. Maybe it was because she was in a MC facility and already had nursing care...not sure.  I do know when it is my husband's time, I will not stop at the first refusal. There are many companies out there and some are better dealing with dementia than others.  Keep looking and I wish you nothing but success!

Mint

These posts are reminding me of something a favorite instructor of mine said to me.  He said it doesn’t matter what institution you go to, it’s who meets you at the door.  Think this holds true for many things in life.