Dementia, hospitals, and joint replacement

Rescue mom

I’ll try to keep this short, but it’s complicated. I hope it may interest, or be helpful, to someone here:

Thursday evening before the New Years holiday weekend, my DH with stage 6 Alzheimer’s, fell and shattered his hip. He had no mobility issues, he just fell. A terrible “stuff happens” accident.

Immediately hospitalized,  surgery scheduled for the next day.  I questioned the need for surgery, saying he’s got Alzheimer’s and surgery has to be life and death. A team of docs and nurses just looked at me and one said, “This IS life and death.” Acknowledged a total hip replacement (THR) is rare at his age of 80+, much less Alzheimer’s, and would do only if absolutely necessary. It was. “Significant” arthritis also involved.

And the care nightmare was under way. All staff readily recognized he had officially diagnosed Alzheimer’s, no argument. 

But I cannot begin to list all the things that were done, or not done, because they didn’t really know, or believe me, on what Alzheimer’s means. Most problems were due to them thinking he’d remember directions, or that he understood what they said to him.

When I told them he can’t/wouldn’t do (or remember) because Alzheimer’s,  the responses included.: “I know he’s got Alzheimer’s but…1. He seems so nice. 2. He recognizes you. 3. He knows his name. 4. He ate his fries without help” Etc.

His doctor even told him things about his treatment plans, and thought he would remember. When I protested that I should be told, she said he hadn’t been ruled incompetent by courts and she was following hospital policy just telling him—although I had DPOA, health care surrogacy, and several other legal documents that supposedly covered this situation. . (Remember, a weekend, with few/no admin. around.)

It became a huge legal and internal hospital fight, with multiple attorneys—hospital, Medicare, my own (not an expert, holiday weekend) nurses reps—over his discharge. 

His doctor wanted him gone 24 hours after surgery b/c the surgery was successful by Medicare guidelines. I protested because of his tremendous pain (and there were no remotely acceptable rehab beds available). Nurses also protested, though much quieter, saying he had not had a BM as required for discharge.

Doctor said DH told her he *did* have BM.. I said Alzheimer’s, he would not know, like he doesn’t know if he ate or showered or had meds. She said “He knows THAT much.” Discharge ordered. Then more admin. meetings. Word spread throughout hospital about discharge fight. 

Meanwhile, I filed Medicare appealS to win a couple days to find rehab. bed.

Somehow the nurses (lawyers?) prevailed. Discharge order rescinded just 3 hours before hospital-ordered transport to a truly awful rehab. 

By Tuesday after New Years, we had a rehab bed, and he did what was needed. I was told later my documents were correct, and  steps are being taken to make sure all hospital employees are clear on such matters….(sure).

He’s been in rehab since Jan. 3. One of top facilities around for years, but now  terribly short-staffed. Doctor friends tell me most other places are worse off (for staffing). I’m visiting long-term care places. There are 4-5 that would be fine, except….no beds. But he’ll likely stay in this rehab for a few more weeks.

His dementia is worse, but not as much as I feared. He’s expressed almost no interest or curiosity in his surroundings, which is probably good in many ways.

His physical “rehab” is indescribably problematic b/c he does not understand the need for PT or movement, which is very painful. PT is everything in joint replacement, and many/most PWDs simply cannot do it enough or right. 

I’d advise anyone considering it for a LO (I see  the question a lot from adult children) never, never never—until life or death, then be prepared, which is pretty much impossible.

Bottom line: 1. it is stunning, breath-taking, how little hospital  pros know about dementia, especially in this retirement area. 2. You can have all kinds of paperwork, but one person who’s unaware can cause huge problems. I have no idea of an answer, except education—which takes time and money, both in short supply.

 And god help anybody who needs a hospital on a holiday weekend.

harshedbuzz

Rescue Mom--

(((Hugs))) to you and your dear husband. Thank you for sharing your experience so that others may be forewarned. 

The level of understanding around dementia among medical professionals is breathtaking. The only medical professional I interact with who gets it is my dentist. He was caregiver for his own dad with dementia.

I hope he is able to get to a place of less pain and better mobility. My younger aunt became guardian for her older sister with dementia and decided she should have total knee replacement because of the pain, swelling (sometimes getting pants to fit over the joint was difficult- it was that bad) and mobility issues. The surgery itself went swimmingly, but my aunt suffered a stroke in recovery and never walked again. They did some minimal passive PT in a rehab and she was discharged to a nice MCF. Despite all that, the surgery did relieve her pain and she lived another 8 years as one of those pleasantly confused little old ladies.

HB

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nancyj194

Dear Rescue Mom,

I read your topic with a heavy heart. You have been put on such a difficult road and so here you are.  Sadly when it comes to the medical profession, ignorance is not bliss, but an incredible heart break story.  

In some small ways I have been through with what you are going through with my husband who does have Alzhemier's, and my Mother, who did not have Alzheimer's. She did fall and break her hip the day before she turned 99 and was taken to the hospital and given a partial hip replacement before we arrived from the 600 mile drive that day. She was competent enough then to agree to the surgery. Her pain was incredibly bad, which was helped and finally eliminated by the surgery and subsequent rehab for the following three months.  I was told after the surgery, that she would have been in constant pain without the partial hip replacement, and would never walk again.  

She survived the surgery and moved to rehab the following day for not quite three months and returned home and is still there at 103, with now worsening age related dementia.  She has Seniors helping Seniors spending three afternoons a week with her. My sister and I, who both live 600 and 1000 miles away, want her to go to Assisted Living, where she now has a younger sister living there, but Mother refuses. She gets up, dresses her self in appropriate clothes, makes her bed, takes her vitamins, showers, use the toilet, etc. She is on no prescription medications and except for her hip replacement meds, has never had the need for any.  She does take her vitamins daily.  We get daily emails from here and phone calls when it is "important." 

Now for my husband who  had an emergency appendectomy a year ago last fall.  The hospital staff did remarkably well with him when I told them he had Alzheimer's. Each morning the doctor would come in and ask my husband if he knew why he was there and he would pat the side of his abdomen where the surgery had been preformed. She smiled and said yes. 

He never once told her why he was there and yet she accepted his response. I brought him home on the 3rd day after surgery and he looked at me with such seriousness and wanted to know why he was in this office building with a lot of friendly people across the hall. I explained he was in the hospital to have his appendix removed and the the friendly people were the doctor and nurses.  He accepted my truthful explanation.  I was surprised he had no idea why he was there.  

Where I have had the most problems is with our fairly new doctor. He only treats patients over the age of 65. My husband is 83. The doctor wants to keep giving my husband more prescription meds that would perhaps keep him living for years. The latest being for A-fib, which was discovered when they removed my husband's appendix and again when I took my husband to the ER when he could not stop coughing.  He was diagnosed with the common cold, which had a bad effect on his lungs. 

They did prescribe a new blood pressure medication for the A-fib at the hospital. When we did a follow up visit with our PCP, we were told to keep my husband on the new med, so he was now taking two high blood pressure meds.  I asked, was the doctor's goal to keep my DH alive past me being able to take care of him, the doctor did not reply.  

My husband decided on his own, when he asked what the new pill was for, and I said A-fib. With a lot of irritation, DH said he did not want to take the new pill, so he stopped.  He still takes his long time BP medication along with eight other non Alzheimer's drugs. 

What I learned from our Alzheimer's neurologist, is if I take him in once a year and mention any sort of problem, such as the minor TIA's that go away in a minute or two, the doctor orders multiple tests to find out what is going on. I ended up not scheduling all three of those appointments and so far have not been back to the neurologist.  

Their goal is to prolong life whenever they can.  I cannot fault them for this, but thankfully I was able to control the outcome of that.  

What you ran into with your DH was so above and beyond what I went through that I had to pause and reflect on what some of us are dealing with concerning the unaware medical profession. This is mind boggling. 

Keep doing your best to stand up for what you know is right.  

I wish you the best, though the comment seems so trite with what you have been going through. 

N

M1

What a saga RM.  Broken hips are a not infrequent cause of death--I think of Lickety Glitz's mom last year (over a year maybe, now?).  Very hard to know whether it was the right thing to do or not-but not doing the surgery would also have been very, very difficult and very, very painful.  None of the rest of it surprises me one whit, complicated by very typical holiday cr**/BS.  More power to you for holding your ground.

One concern for your own information:  find out whether the replacement was done by an anterior or posterior approach.  Posterior is the older approach--but also carries a higher risk for dislocation, if he moves wrong (which he might, because he won't remember not to).  If it was done by anterior approach, his risk for dislocation is way, way less.  

zauberflote

Oh Rescue Mom... what a horrible mess. You are a strong woman with such drive. I am pretty sure J would have collapsed at the lawyer stage. 

My mom sheared her hip and fell, had a partial hip replacement the next day, and then our stories diverge. Mom stayed a week in the hospital. I didn't have to push at all. She was a tiny wisp of a frail thing, maybe that helped. We knew rehab would be useless. I was very very very fortunate to find, right here in town, a "mobile self-pay" PT. Since she was discharged straight back to MC (with extra help that the MC aides didn't seem to know how to use), and was immediately back on hospice, MC couldn't allow any other kind of PT than this, and Medicare wouldn't cover it. All very complicated but it worked beautifully. The PT had family experience with dementia, and his approach of a slight flirtatiousness really worked with Mom. He visited 3x a week and gave no homework. Inside of six weeks (not including the first week back at MC when he wisely advised to let her rest and heal) he had her walking to the dining room and back. 

Where I did run into ignorance was with the mostly young hospital RNs. They would chirp and chirp at her, with "okay?" at the end of each phrase. Mom knew enough to answer that "okaay?" with her own "okay!"  even though she had ZERO notion of what had just transpired. And I knew if I told them out loud Mom had dementia, they would turn right to Mom and chirp at her about her dementia, which would have been devastating. I spent alot of time there, and hired a CNA to sit there at night. It worked. 

We had a disaster hospital experience over July 4 weekend 18 months before that. Long awful story. Holiday weekends are the pits. 

Joydean

Rescue Mom what a horrific ordeal! Thank goodness you were able to hold your ground. It’s hard enough just trying to take care of our loved ones without the ignorance of so called medical professionals! I understand doctors try but to just blow off his cognitive disease because they don’t truly understand is unethical in my opinion. 

Hugs and prayers for you both. 

Iris L.

My 91 year old frail neighbor who does not have dementia fell in the shower right after Thanksgiving and became bedridden. I worked to get her home physical therapy to work on transferring, use of the walker, balance and home safety.  The young physical therapist pushed her through a set of leg exercises which made her short of breath.  She is a cardiac patient and cannot exert herself too much.  After two sessions, she has refused further PT.  These people just don't know how to work with frail older adults.

Iris

Joe C.

Rescue Mom, I am sorry you & your LO are dealing with such a horrific situation and injury. This is one of my biggest fears, DW had to short hospitalization this past year and it was a real eye opener of how poorly staff understood how to deal with someone with dementia.

White Crane

Rescue Mom,  how awful for both you and your DH to have to go through such an ordeal!  My heart goes out to you.  Like others have said, the medical profession seems clueless when it comes to dementia.  DH's PCP has finally gotten the message that DH can't answer his questions except to say that he is fine and there is nothing wrong. He now asks me when he needs to know something. 

Having a LO with dementia in the hospital is difficult at best but what you went through is over the top.  I pray your DH gets the care he needs.  He is blessed to have you as his caregiver.

harshedbuzz

Victoria2020 wrote:

Indeed, I've had Doctors in training at a top medical school  to be "memory care specialists" start a patient interview with "I see here you have mid-stage dementia, probably Alz" with such cheer as if the PWD had won the door prize. Rest of the "interview" was just the PWD freaking out .

I'm sorry.

It didn't take long for me to figure out that medical pedigree is no indication of best practices in being a member of a dementia care team. Dad was diagnosed at a big Ivy League hospital with an affiliated Memory Center. The news was delivered by a Professor of Medicine during rounds who told dad he had Alzheimer's and could potentially live 10-20 years. Dad looked up and said "that's the best thing I've heard all day". 

Still, it's better than the MD/PhD to whom he was referred at the Memory Center on discharge who used to try to reason with him.

HB

toolbeltexpert

Rescue mom. I could feel the anxiety rise inside me, realizing how common, your story is just absolutely unbelievable that there are folks out there that somehow missed the bus about Alzheimers. Dpoa's and won't even consider for a second to learn except at the expense of the caregiver and the pwd. I find I am asking those questions about situations at the mcf so I know that my understanding of what I want is heard. I learned sooo much when my dw did a 6 week geripsych. 

Thankfully there are some real trained people out there.

Ed1937

It seems as though dealing with dementia patients should be a required course for people in the medical field. Unfortunately  finding medical professionals who actually understand the likely problems they will experience with PWD is like finding the needle in the hay stack. It shouldn't be this way.

Most of the time I didn't find medical professionals who were clueless. That was probably because my wife didn't need anything like major surgery after dementia found it's way into our lives. With the few ER visits, people there seemed to be relatively competent. 

One trip to ER was done by ambulance. I had to sign in at the desk, and I was told I could not go back into ER with her until she was given a room. I raised enough hell that within five minutes or so, I was allowed back there. She was in a bed in the hallway because they didn't have an empty room for her yet. To think that it's OK for someone to be alone who doesn't know where they are or why they are there is ridiculous. After complaining to the patient advocate in the hospital, things did get changed regarding LOs being admitted into the ER when the patient has dementia.

HB, I'm sorry for what you and he went through. That's beyond not being OK.