Pacemaker for DH with moderate/severe dementia/Als

sisyoung

My DH was diagnosed with moderate dementia/Als in Oct of 2020. Fairly uneventful first year, till Oct of 2021, then straight downhill, with a 3 week stint in a Behavioral Hospital to try and get his meds adjusted, then another 11 days in regular hospital in Dec with psychiatrists trying different meds. Anyway, he was recently diagnosed with CHF and I am at a loss to know what is best. He is constantly having one delusion after another and many days only wants to sit in his chair. His first cardiologist said don't do anything to prolong his life. Second opinion said pacemaker to help protect him from falls, etc and help with his constant fatigue.  His psychiatrist said she personally wouldn't want one herself, but what do I think he would want.Has anyone else dealt with this?

Stuck in the middle

Hello, sisyoung.  I am sorry you are in this position.

Like you, I have been married 55 years.  In your position, I think I would follow the first cardiologists advice and let him go home.  That's what we did when my father's cancer was overwhelming, and I have never regretted that act of kindness.

jmlarue

Sorry to say, I think this situation has to be strictly left to your own judgement guided by what you know of your husband's wishes. My DH's mother was diagnosed with ALZ, suffered the long, slow decline to death 12 years later. My husband was very vocal about wishing himself dead rather than face the same fate. There were promises that I would never allow any extraordinary measures to prolong his life. What did he consider extraordinary? Pretty much everything - CPAP machines, blood pressure meds, statin drugs, flu shots, cancer treatment, the list goes on. His pre-directive is  3 full pages, so I know this was not just emotional rantings. So...bottom line...I feel ethically bound to abide by his wishes and live with the worry that any call to 911 would initiate life-saving procedures he specifically does not want. It's a hard place to be. In my shoes, giving the go-ahead on a pacemaker is out of the question. It might prolong his life, but it won't improve the quality of it or honor his directions.

Hopefully, you and your LO have had some sort of conversations about death and dying before he was diagnosed with dementia so you have some idea about how he would feel about a pacemaker. Moreover, only you can decide how to honor his wishes and still remain true to what you think is the ethical thing to do in any given situation. I never wanted to be the gatekeeper on such things. I'm sure you don't either. Yet, here we are.

RNS

My DH had a pacemaker placed last summer. He was 87 at the time-now 88.  His cardiologist urged the pacemaker because he was worried DH would pass out because his heart was beating so slowly and fall causing very serious consequences.  He could either have another brain bleed, broken bones and could be in rehab or a coma for a very long time.  His PM is working 88% of the time.  I watch DH sleep in his chair ( 16-18 hrs a day),  lose urinary control,  struggle for words,  forget what I told him only 30 seconds before, hate showering and any kind of hygiene, unwilling to eat anything except ice cream and french fries, crying because he has forgotten how to dress himself, and the list continues.  I encouraged DH to have the pacemaker because I was hoping he would feel better and have more energy. Also, I was afraid for him. DH really didn't want to have the pacemaker but he was unable to understand the consequences.  His son, a retired ER physician, also encouraged him  Now I wonder what in the world was I thinking!  He has no quality of life and his energy or movement did not increase.  I'm not sure it was the right decision.  I can't tell you what to do except give it considerable thought before you make your decision.

harshedbuzz

sisyoung-

I am so sorry. This is such a difficult position in which you find yourself.

My dad did not have the cardiac issues, but his presentation of dementia was as you describe your DH- he spent stage 5 sitting on his butt and stage 6 in a semi-reclined position on the same sofa. He was completely apathetic and almost impossible to engage in a positive manner. He fell even without heart issues. A lot. My friend's mom who was ridiculously fit-- the woman was 92 and had perfect BP and cholesterol levels and walked a couple of miles daily fell. A lot. Even if a pacemaker improved falling, I would expect falls in the later stages. 

The addition of CHF might allow you to access hospice care now to assist with his care and support you.

My BIL- also an ER doc- refused a pacemaker as he felt it could potentially lead to a more medicalized death or lingering situation with little quality-of-life. While I am sad we didn't have him with us longer, he died peacefully napping at home with his dog. He had a peaceful and gentle ending. 

Some people feel allowing other medical conditions to go untreated can allow a PWD to skip the devastating symptoms of end-stage dementia- pain from contractures, skin breakdown, infections, etc.

This might help you make a decision-

Amazon.com : hard choices for loving people

HB

May flowers

Did your husband give you any hint when he was coherent as to what he would want? We might have considered something like this in the early stages for my FIL but the last 9 months have been so uncomfortable for him, probably not. He was clear he didn’t want to be kept alive artificially in this type of situation. We opted to do partial hip surgery for pain in January, and while it worked, he never recovered to the point he was before and can not stand or walk anymore. Even though my FIL doesn’t have heart problems, he is tired all the time and he falls. You might find that to be the case even if he gets the pacemaker, because it’s the progression of the disease, sadly.

Gig Harbor

Always keep in mind that you don’t have to accept treatment because it is offered and it is not wrong to refuse treatment. I have heard of people in the final stages of cancer requesting that their pacemakers be shut off when prolonging their lives causes them excruciating pain. You could always have the pacemaker turned off if you determine that his condition has deteriorated so much that it is better to let nature take its course and bring in hospice. In many countries a pacemaker is a treatment that would never be offered. If he had terminal cancer you might make the decision to stop all chemo without feeling guilt. A pacemaker is like chemo for a heart.

sisyoung

Thank you all so much for your input.  It is so helpful just to have people to talk to who understand where I'm coming from, My DH and I did discuss our end-of-life wishes from time to time, but we were focused on not wanting feeding tubes, respirators, etc., in cases where there was little or no hope we would ever fully recover. We both would have probably opted for a pacemaker if the heart were the only issue, but I've just been conflicted because his decline has been so rapid, and I wanted whatever time he has left to be the best it can be. Thanks again for caring. Praying for you all.

sandwichone123

In theory you can always have the pacemaker turned off, but in practice it is sometimes impossible to find anyone that is willing to do that, regardless of the condition of the patient. By ceding power to the medical establishment, it is sometimes impossible to reclaim that power at a later date. Also, some families feel there is a moral difference between not getting the pacer in the first place and having it disabled later, which leads to guilt and lack of action.