aspirational pneumonia

Lgw

Aspirational Pneumonia. My new nightmare. Even after tell the hospitals (I had to go to a 2nd hospital to get help) that my DH has Vascular and Mixed Dementia they didn''t seem to know or be aware of this disease. My DH was extremely dehydrated because he was sleeping 24 hours a day. I forced liquid through his lips in a straw. Little did I know that was the worst thing to do. I just knew he was dying. The 1st hospital actually gave him 3/4 of a bag a saline and sent us home telling us to contact his doctor within 10 days. If I had waited 10 days he would not have made it. I got in to see the doctor on Monday before Christmas and the Dr (reg not memory doctor) sent us immediately to a bigger hospital. After 5 hours in the ER waiting room ( full of COVID, RSV, Flu and heart attacks.) they finally admitted him. Now we are at ReHab, and they are getting the paperwork of an In Hospital DNR set up. I started that are the beginning of this journey but never got it finished. Has anyone else gone through this? The research I've done says that with the dementia cases that after the first bout they are usually dead within a year. I thought I was ready and prepared but I found out that I am not. With dementia being such a slow disease, I thought I had years of this.

Lgw

Did I do the wrong thing getting him help? Was it better to have him pass?  I realized that I was desperate to keep him alive at all costs.  Now when I visit him at Rehab he just begs to come home and to get a drink of ice water.  He hates the thickened water that is at room temperature.

dayn2nite2

Pneumonia is not a "suffering" death.  It's up to you what you want to do, but this would be a time to have a conversation with family or his medical staff about care goals here.  Once the pneumonia starts, it's a matter of time to when he gets it again.

Everyone is different.  If you want to choose lots of intervention and hospitals, that is your right.  Generally, the recommendation is to bring hospice on as soon as he's accepted (and sounds like now would be good), follow the feeding and drinking guidelines set for him and hope for the best while keeping him comfortable and out of the hospital.

terei

It sounds to me from how you have described the situation that you need the help of hospice.  I would call + see if you can have him evaluated.

Lorita

Hi Lgw,

My husband had vascular dementia, too.  We woke up on Christmas morning eight years ago and he was vomiting.  Got him to the hospital and he was dehydrated and had aspiration pneumonia.  I had no idea he was dehydrated.  After he was able to come home I sort of knew what to listen for as far as aspiration went.  I think he did develop it again.

I know how you feel - we want to do any and everything we can to keep them with us and to keep them as well as possible.  As far as him disliking the not-cold, thickened water, maybe they could use ice water to begin with.  Charles used the thickening, too, and it did help him swallow.  

Hospice will be of help to both of you.  We were only on Hospice for a couple of days but they brought out medicine at 10 p.m. and the nurse came when I called.  Take care of yourself as well as you can.  I wish there was something we could do to help.  Enjoy the time you have with him and let him know you're there.  Rest when you can.  I'll say prayers for both of you.

Quilting brings calm

Lgw-  you did the best you could with the knowledge you had at the time- especially in the heat of the moment.  You are also doing the best you can right now by making an informed decision about what to do in the future.  Get the DNR done, call in hospice,  or palliative care if he isn’t accepted for hospice.  Although palliative care seems to mean different things to different medical professionals. 

He’s not going to be in rehab forever.  And he will get his drink of ice water soon.  

I know that my step-dad will not follow the guidelines when it comes time for his own bouts with this.  He already has swallowing issues due to a misshaped esophagus after multiple surgeries ( and radiation) for thyroid cancer. The issues  aren’t bad enough for thickening agents yet.   He continues to eat things that are hard for him to swallow because he is stubborn.   

Mint

Lgw personally don’t feel there are right or wrong decisions really, we just have to do the best we can to find what we are comfortable with and it’s hard  sometimes.

Think it would be good for you to discuss this with his speech therapist at rehab.  They are the experts in this area.  Maybe find out what they have learned working with him.  Is it something they can help him with, is he able to work with them if it is?  Is it something that they can’t help him with and will always need liquids thickened.  Is the thickened liquids preventing the aspiration?  Is there any issues they see yet with aspirating regular food?

If they say he will always need them thickened, if unthickened liquid given then he will more than likely aspirate over and over and pneumonia will reoccur.  Same goes for regular food if he starts aspirating it.

Pneumonia is a serious illness.  Can make you very sick, and can lead to death.  Again don’t think there is a right or wrong answer.  You just need to get all the facts and then decide what route you want to take.  Nothing about any of this  is easy.

Take care

Lgw

I knew my friends would have so valuable answers,  The rehab said they would get the DNR ready.  I had thought I had all the paperwork done. POA, Medical POA; updated will. The doctor even asked me to bring the DNR up for him to sign.  That was on list for after the 1st. I can't tell you what your kind words have meant to me.  I hate this disease.

Jo C.

You are doing the right things to bring needed care for the circumstances that can be appropriately provided.  It is a difficult time, but you are rising to the challenges very well as you learn and are being a good advocate for your Loved One, (LO).

I would strongly recommend having Hospice do an assessment and if accepted as a patient, Hospice can be a great service to both your LO and yourself and bring much added peace with support for both of you. Hospice can provide care in the home as well  as when the patient is in a long term care facility.

Sayra's input is spot on. There is not one right and not one wrong. It is about choices and approaches.  She is a professional and has spent years as a Respiratory Therapist; I am an RN. It is true; a Speech Therapist is the professional that can best assess aspiration causes and risks and can best prescribe the steps to be taken to lessen aspiration for the patient.  Aspiration pneumonia is serious business; while not always preventable, steps can be taken to reduce risk as much as possible as an ongoing issue. 

The old saw that pneumonia is an old person's "best friend" is just that; an old saw from years and years (decades) ago when there were no real treatment options.  It does not bear repeating.  Pneumonia most often is a significant struggle.  Sometimes pneumonia recurs, other times it does not. 

NOTE:  Unless a patient is imminently in the active dying process, Hospice treats pneumonia and other infections such as UTIs.  It is about alleviating suffering, patient comfort and quality of life for the time left.  Hospice does NOT hasten the death process; in fact this is set into law. They are about support and providing the best quality of life that can be managed under the circumstances of the patient's condition until death and are also support to family that continues following death.

My LO did indeed have aspiration pneumonia occur twice; in each instance, Hospice treated the pneumonia which greatly helped the suffering from struggles to breathe and being unable to have a sufficiently strong enough cough to alleviate the choking, drowning feeling.  If the pneumonia is advanced and not one that will be responsive to treatment, they will bring supportive medical comfort measures, but in my LOs case, the treatment was successful and made a difference in comfort.

So hope that you will find the support that will help you and your dear husband as you move through this time.  You are doing as best you can, step by step and as said, Hospice can be a very real asset.  Let us know how it is going and how you are doing, we will be thinking of you.

J.

harshedbuzz

You said this in another thread:


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.


My dad died from complications of aspiration pneumonia. At the time he was very verbal and ambulatory; I considered him to be stage 6. We'd moved him to a wonderful MCF only 7 weeks prior as his resistance to care from my mother had become a power struggle that was impacting her ability to look after her health. Dad was seen daily by a nurse and cared for by a team of experienced and well-trained health aides and we were still shocked when he developed aspiration pneumonia.

In the last week of dad's life I became concerned about how he'd physically changed and discussed it with the DON. Dad had lost weight since his last monthly check. The DON brought in an SLP to check dad's swallowing and ordered an X-ray and bloodwork. I brought dad lunch when the SLP was there; she worked the chicken strips and shake from Chik-Fil-A into her testing. He talked about my sister visiting (sis died in '94) and flirted shamelessly with the attractive SLP. 

She was concerned about aspiration and explained that his epiglottis wasn't acting quickly enough to prevent aspiration. Her concern was the non-thickened liquids could wash food or even saliva hanging at the back of his throat down his windpipe. We collaborated on a plan for safe feeding-- upright, no mixed textures like chunky soup or cereal, no straws or sports bottles, food cut into smaller pieces but not pureed. We talked about thickening but decided to wait on that as dad was resistant to hydration- she liked the idea of milk shakes and watery fruits to get fluids into him. She shared that she was surprised how bad his swallowing was in the context of his speech and ability to know me and my sister.

We met with the DON and agreed to have hospice evaluate the next day. He didn't last the night. Mom got the call that he had passed around 10pm that evening. The next day, the X-ray and bloodwork suggested aspiration as the cause of death. We weren't bedside as this wasn't "expected", but his evening nurse assured me that he didn't seem distressed for which we are grateful. 

HB

JJAz

Lgw,

My husband had pneumonia 3 times.  The first time, we believed that he had community acquired pneumonia.  The 2nd time (4 months later) we knew that he had been choking occasionally prior to diagnosis, so I was not surprised at the diagnosis of aspiration pneumonia. 

 I had previously decided that he would not go to the hospital (from memory care) for treatment of pneumonia.  However, within 1/2 hour after diagnosis, I knew that I was not ready to let him go.  We called 911 and he spent a couple of days in the hospital.  It was the strangest experience for me because I was SURE that I would never want him to go to the hospital for treatment, but yet when the time came, I changed my mind.  The third pneumonia was just one month later and that time I was ready to allow him to die.  Did I  do the right thing each time?  I don't know.  I only know that I did what I had to do.

Blessings,

Jamie

JJAz

p.s.

My Father died of aspiration pneumonia just a few months before my husband.  We knew that he had swallowing problems.  He hated most of the modified diet, including thickened drinks, and restriction of his evening martini.  I chose to not enforce the modified diet knowing the risks, because he was 97 and had many other serious diseases that could kill him at any time.  I hope my daughters consider my quality of life when I'm at the end of my life.

Blessings,

Jamie