Recent decline

nancyj194

Hi,

My husband is showing a rapid decline since he caught the common cold.  This started early in October with a cough. The night before we were to leave for my mother's, he could not stop coughing.  I became so concerned, I called 911 at 2:30 am.  

Tests showed he had the common cold aka rhinovirus. All of the other covid and pneumonia tests came back negative.  He also showed signs of Afib and RVR. He was given a medication for the Afib and a steroid for his overly sensitive lungs and sent home that afternoon, even though he had been admitted to the hospital and put in a room.

The ER doctor said it would be okay to go visit my 102 year old mother, so the next day we did. Our son and DIL, who is a RN, drove.   The trip went well and thankfully my mother did not catch what DH had.  Masks were worn now and then the two days we were there. Mother still lives alone on the family farm where I grew up. 

This summer/fall, DH did so very little.  He tries, but becomes too tired and so he sits in his recliner most of the day and sleeps.  The tiredness could be from the Afib.  The family doctor wanted to put him on Eliquis last year, when the rapid heartbeat became apparent, after DH had an emergency appendectomy. I said no, as the cost of the drug was $500 a month with insurance.  I'm also at the point of what measures do we treat my 83 year old husband with advancing Alzheimer's. 

We both have POAs, advanced directives, as well as long term insurance. 

He mumbles, or as he calls it, singing, and does this constantly. The only time he stops is when he is sleeping. I can hear him coming long before I see him. His appetite keeps decreasing and his weight has gone down. 

Last night, he came from his bathroom and said the toilet overflowed. I grabbed some towels out of the linen closet and ran down the hall. Indeed there was a flood.  He kept mumbling and was obviously stressed.  I told him to go sit down and then I cleaned everything up.  Dawn dish soap and some hot water did open the toilet,  after I let it sit for 30 minutes.  I wasn't sure, but thankfully it worked.  

All in all, his long time progression of Alzheimer's has been fairly easy for me. I know I am fortunate. 

Both the fairly new PCP and the Alzheimer's neurologist have wanted to run multiple heart tests and put DH on more medications that could extend his life. He is already on seven medications.   At one point I asked the doctor if the goal was to keep DH alive so he would end up in a nursing home/MC facility when I could no longer take care of him. There was no response.  

Am I missing something here with the medical profession? Perhaps I am being selfish. 

I am tired and stressed at having to do everything. I also never go any place without my DH.

Thanks for listening. I'm hoping no one is overly judgmental. I've been full time caretaker since well before 2013.

N

Jgirl57

No judgement from me but a big hug to you. I don’t know enough to comment 

On your situation but I have read here before that at some point you do stop

Treating new conditions such as what your husband is experiencing.

Joe C.

Nancy, Sorry your going through these recent challenges. As for the professional help with Doctors wanting to extend life, IMHO physicians are trained to cure/mend/help people and SOME have difficulty with the concept that “do nothing” may be the best help when the patient in beyond the cure/mend point.

loveskitties

The best ER doctor we had when my father was taken for a fall, was one whose own father had dementia.  He got it.

He was very good at explaining that there were tests that could be run for issues not related to the fall but that we then would be having to weigh treatment options.

He left it up to us, but just put it out there that it would only prolong things, not cure anything.

We made sure that he understood that our goal was for father not to be in pain or mental anguish in his last days.  He helped us with that.  

Father's medical directive was very detailed and explicit about what conditions not to treat other than for comfort care.

The rush from the MC facility to ER stopped...Hospice was called in...and father died peacefully in his sleep.

It was a difficult talk to have with the doctor, but one that was needed.  His own experiences with dementia went a long way in being able to understand all the feelings and anguish we were all experiencing.

Gig Harbor

My husband is in memory care and is definitely going downhill. He shuffles and I am sure falls will be next. The nurse practitioner and I discussed him staying on Eliquis for his a fib but we decided to stop it. She has taken him off everything possible except meds relating to dementia. He has forgotten how to swallow pills and chews them so we had to switch to liquid meds when possible. I think you want to keep him comfortable but I would not do any tests for my husband. I don’t think there is a right or wrong answer and you just have to do what feels right for you.

M1

Nancy: the only thing I would change in his meds is if there's something that you think might improve the way he feels.  Blood thinners won't do that and carry lots of risk--but you have to accept that not being on them carries risk of stroke, too.  The only thing that occurs to me is that if his heart rate is still really fast, giving him something to slow it down might make him feel better and be less tired.  But that's it.  I would NOT put him through any testing beyond measuring his pulse rate.

You are not missing anything--it's the docs that are missing the big picture.  The obtuseness on these thongs just stuns me.....no nuance 

Quilting brings calm

No judgement here.  My mom and step-dad are in their 80s too,  both with dementia, and he has COPD, heart issues, etc.   I feel like you do and neither of  them wants to live long enough to die of dementia  Each had a parent do so in their late 90s.  Each had the other parent die in their 60s.  

Full disclosure.  I am 63 with AFIB - only 1  diagnosed episode,  it happened after surgery several years ago,  I’ve been told that’s a fairly common way for it to show up.  My assigned cardiologist put me on a statin  and baby aspirin. She has since left the practice and my assigned NP is bound and determined that I’m going on a blood thinner when I turn 65 ‘ just because I will be 65, female, and have AFIB’.  I plan on saying no and I have discussed it with my PCP / who totally gets it.  I already bleed too much and bruise too easily, 

You get the final say.  The doctors all feel obligated to prolong life regardless  of the damage that does to the patient and their family. They also feel they need to follow established treatment protocols without consideration of other facts. 

Pat6177

Nancyj wrote: Am I missing something here with the medical profession? Perhaps I am being selfish. 

It’s the medical profession that is missing something. I’m in a similar position. My DH is in early stage 5. He walks and talks, no problem with ADLs. That’s what others see. At Dh's last appt a month ago with PCP, he had microscopic blood in urine. He’s had this issue for years and it was worked up 3 yrs ago before prostate surgery. No problem found. Now the amt of microscopic blood is higher and PCP wants DH to get a cat scan, go to the urologist and also see a kidney doc. She says treating this would make a difference in his quality of life but didn’t give details. DH does have chronic kidney disease and will need to start seeing a kidney doc at some point as his kidney function declines. I was able to finally get across to the PCP that I thought dying of kidney disease would be preferable to dying from ALZ. It’s helped to write this out. Thanks for listening.

M1

Pat, you are spot on.  Art Buchwald was a very funny and astute columnist who refused dialysis and life-prolonging measures when he developed chronic kidney disease, and he wrote and spoke fairly eloquently about it.  I would absolutely NOT work up microscopic hematuria in someone with dementia.  Raises the question:  why did she look in the first place?  Before any test, one needs to ask, what am I going to do with the results?  Will it make a difference for this person?  But that's not what happens, tests get done in a "knee-jerk" fashion and then no one knows what to make of an abnormal result.  If they can't control it:  you can; think hard about what docs you take him to, at all.  I would NOT take him to a kidney specialist; what's the point?  If your PCP doesn't get it, ask for a referral to a palliative care specialist.  Maybe that's in order, anyway.

Many people with end-stand renal disease die of high blood potassium.  Not a bad way to go--causes heart stoppage, usually fairly quick and sudden.  One of the former coaches for Olympic star Wilma Rudolph and the Tennessee State Tiger Belles had chronic kidney failure and recurrenlty high potassium---can't tell you how many medical residents learned how to pick up high potassium from reading his EKG's in the emergency room.  I certainly did.

nancyj194

Thanks everyone for your informative, caring, responses. 

It helps to read what those who have been through this have done and think about prolonging the life of LO's with Alzheimer's/dementia.  

M1, I didn't know anything about palliative care, so looked it up will think about perhaps getting it for my DH. I've been thinking of hospice this last week, but am maybe a little early. 

DH was put on baby aspirin and a blood pressure medicine after a heart attack in the late 1990s.

He bruises quite easily on baby aspirin.  His father was on coumadin and warfarin and was bleeding to death inside his body. His doctor took him off of the medication and my FIL died within the month.  I did tell our PCP that neither of those drugs were an option. 

I have to go, but want to comment more later.

N

JudyMorrowMaloney

Nancy, no judgement here.  My DH has Frontotemporal Dementia and has some of the same issues as your DH.  I have noticed a significant physical decline in that he loses his balance and gets winded very easily.  These doctors want to do all kinds of rehabilitative things but you can't rehabilitate dementia.  I'm at the point where I am ready to let him go.  I just want him to be comfortable in his last days/years whatever time he has left.

ThisLife

I totally get the ongoing specialist visits, tests, and procedures.  All of these upset my H and causes increased agitation. He has no concept of why he has to go through these tests and procedures and no ability to understand even the simplest explanation. 

And my question has been, "To what end." Finally, came to the conclusion that the medical professionals will put you through whatever you will go for. Took me three times to get the PCP to back off. I found that "No, we're not doing that" with no further explanation is the only things that works. 

nancyj194

I'm back after dealing with my own health problems.  Not easy when caring for my LO.

ThisLife, thank you for the input. I agree that a clear concise "no, we are not doing that," works best.  Any reasons will bring a discussion into play.  Thank you for reiterating that, as I sometimes forget.  Many years ago, our church kept calling me asking if I could do things for them.  In the beginning I would take food when requested, etc., but the word spread fast and I was being called way more than I was willing to do. One time the phone rang and I ran into the bedroom saying to my husband, "tell them I am not home!!"

He replied, just tell them, "no."

I did the next time and after that  the calls stopped.  It was such an important lesson, he gave me that day. Now you are reminding me how important the word, no, is.  

JudyMorrowMaloney, your husband's decline sounds very similar.  I also am ready to let go and in doing so, I want him to be as comfortable as he can be. Thank you for sharing that. 

Pat, you are so right, dying of kidney disease would probably be better than dying of Alzheimer's. It is so important we make ourselves heard.  I wish you all good things.  

Quilting Brings Calm, have you thought of not going back to the cardiologist? My husband had two, at different times, back in the late 90s, following a heart attack. When the second doctor retired, and because my husband was not having anymore problems, we didn't find another to replace the two he had been going to.  I think our new, young PCP is beginning to get it, but we still have a ways to go. You are are right, we get the final say. Amen. 

N