What to expect when pacemaker quits

[ccironwood]

My Dad is in stage 5 vascular dementia. His pacemaker reports that he has 6 months batter life. Because of the prognosis, we have decided to not replace the pacemaker. He is 100% dependent on the pacemaker. What should I expect when the battery runs out? His doctor told me that it won't just quit at that time. They really don't know how long the pacemaker could last.  I'm worried about pain. I will be discussing this with his PCP and his cardiologist. I would just like some answers before then. Dad's health is not in crisis right now.

[LivingInHope]

Well beyond dependency on a pacemaker, ultimately your dad's life is in God's hands, including his number of days, planned before there was even one of them.  So even if you let the battery run out, if it's not your dad's time to leave this earth, it won't happen just because the pacemaker stops working.

  But since you are worried about pain, why even allow the potential to inflict pain in his chest by letting the battery run out?  Why not just replace the battery and leave the number of his days to God?   My grandma was on a pacemaker for a number of years for skipped beats.  She had peripheral vascular disease and a leg amputation, as well as congestive heart failure.  But when it was the right time, pace maker still working, God called her home.  And the last time I saw her in her wheelchair she gave me a smile like I'd never seen out of her before- with joy shining from her face.    

[ChatterAlly]

How very well said!

[heartfluttersflyawayplz]

very WELL said. i agree with you . i would never never let the battery run out of my love one. i would replace it and let GOD do his will.

[crow260]

I agree with all the comments made.  My battery got very low last October and thru a mixup in scheduling I was at hospital 1 hour early so I was in waiting room for about 2 hrs. and thank God for one of the volunteers who could see I was on verge of passing out he went back and told them to at least take me back to where there was medical personnel.  They came and he took me back in wheelchair and that was my last memory until new pacemaker was in.  I suffer from afib and sick sinus syndrom.  I agree to not put off replacing battery.  Only God determines when it is our time not the life of a battery.  

crow260  

[ed34]

Putting God aside for just one moment, there is also the possibility of medical breakthrough's. Every day new discoveries and treatments are being made in labs all over the world. Look how far things have come in the last 10 years alone. I would always hang in there while hope exists, and hope always exists.

[ireneo]

My Dad had congestive heart failure and had an ICD. At one point they said he was in end stage heart failure and only had weeks to live. His ICD battery was extremely low too. We had the same worries. His doctor felt the least he could do was replace the ICD with a basic pacemaker to keep him comfortable. LOL  My Dad somehow rallied and lived for almost 2 more years. Cancer finally took him, not his heart.

So unless your Dad is in his very last days, I would hope the doctor would replace the pacemaker. It's not a complicated procedure, only takes an hour or so. Perhaps they don't want to spend the money on him. Hmmph. As I said, my Dad's doctors thought he only had weeks, even had him on hospice care, but still thought he was worth the trouble of putting a pacemaker in to keep him comfortable.

[LivingInHope]

Well, God is not aside in advances in medicine- since He is the One Who designed our complex bodies & when medical breakthroughs happen by learned people of medical science, it's His grace that causes them to discover those things.   We don't always get the breakthroughs when we might wish, but even when our bodies are diseased, life is precious in His sight.  

I can't imagine what ccironwood is going through, watching their father go through life now so changed, with advanced dementia.  I think the trial is for them, since their father's health is not in crisis- are they going to be strengthened and grow from this experience?  I think I'd be in breakdown mode for sure if I were in their emotionally hard, draining set of shoes, if I didn't have the Great Physician in my life to cast my cares on.    I pray ccironwood will not let the battery wear out.  

[ccironwood]

The pacemaker is a mechanical instrument. Had it not been for it's implementation, my Dad would be in God's hands right now. Would you have him go through the horror's of the latter stages of dementia. Clearly if you knew, you would have a change of opinion. The stage of dementia he is in in nonreversable. He will get worse, day by day.

Not changing the pacemaker is honoring my Dad's wishes for not taking extra measures to prolong his life.

Just like when my mother had cancer 20 years ago and there was no hope for a cure, we kept her free from pain and gently allowed her to home. That is all I will help my Dad do. Keep him pain free and not take extra ordinary measures to prolong things. That is his wishes.

[ireneo]

It sounds like you've already made up your mind as to what you want to do about the pacemaker. You know your Dad's wishes and will honor them. I think I misunderstood the question then. I was focused on your worry about pain. I thought you were hoping to keep his heart beating gently till his body shut down.

If his heart is paced 100%, then you need to find out more details from his cardio. Did he require the pacemaker because his rate was too slow, in the 30's and he was passing out? If so, then his rate will drop into the 30's again and perfusion to the brain will decrease and his dementia will probably increase to the point that he'll drift into a coma. No pain there.

If he needed the pacer because his SA or AV nodes were destroyed and his heart won't beat on its own, then his heart rate will probably drop off and he'll lose consciousness and that will be it.

Either way, I don't see where he'll suffer. If the doctor is worried about any pain or anxiety over the transition, I would think they could give your Dad some medications to ease that when the time comes to either turn off the pacer or when it's almost ready to stop. That would mean interrogating it often though to figure that out.

I hope you can get more info from his doctors and his time will be peaceful.  

[LivingInHope]

Was it your dad's decision to have the pacemaker put in?  If he decided that, was perhaps his wish not to recussitate if his heart stopped beating in spite of the pacemaker?  (This is what happened to my grandma- her heart ceased despite the pacemaker she chose to have put in many years previous.)    

I worked in a skilled nursing facility and saw and interacted some with patients with Alzheimer's in various stages.   And my grandfather had Alzheimer's.  As a child, he imagined me a dutch sailor with my then blonde hair.  Later, I watched him wolf down chocolates and he was drinking his gift of shaving cream (and family had to get him to stop).   He was obviously not as close to me as your father is, so I cannot say I understand the agony this is putting YOU through.  But God is able to be your strength in this tough time you are experiencing as you cry out to Him and He is able to carry your dad home without man's intervention of trying to hurry it along.  There is no way a functioning pacemaker can stop God from calling His child home in His perfect time.    

[ccironwood]

He made the decision in 1996. That was the decision he made then. Now that his circumstances have changed, HE has made the decision to NOT have the pacemaker replaced and leave the rest up to GOD. I respect and love my Dad. We have had this discussion many years ago and I accepted the commitment to follow his wishes.  A few months ago, this thought (of not replacing the battery) never crossed my mind. God is my strength. I know He is always with me as He is with all of us. My prayer is my communication with him, my intuition, is His communication with me.

[LivingInHope]

Obviously, our accountability to God is what counts in any decision.  Prov. 28:26 speaks to one's own intuition, but if you are God's child, I know His Holy Spirit will guide you as you seek His will and listen with your heart to God's Holy Word, living and active.    

So, what I hear you saying is your dad, early on in his illness decided not to get any future pacemaker replacements, but you recently had the idea of not replacing the battery in his current pacemaker.  Is that right?  Have you had the opportunity to get input yet from his PCP and cardiologist on the pain issue since your original post?  

[heartfluttersflyawayplz]

am really sad that your going throught this, i can relate with you as my mother is now in the stages she dont know who we are and where she lives. ive seen a great woman who raised 4 girls, showed us the ways of being a good wife and mom, very clean woman  go down to this. its heart breaking to see this in a stranger but so much harder when its the one who gave you life and made you what you are.   my mom is a diabete and needs her shots and meds to live, we give to her everyday. i will not stop giving to her because its not my decision to make when to end her life and i do not want that on my head and could not do it knowing without that shot/meds shes going to die sooner.

I will let her body take its course and when the time is right than she will go on to be with our father, with no help from me,   if you know the battery is out and your ok with watching your dad go down that thats up to you. he no longer knows what to do so his life is in your hands now.   my mom has said many of times i dont want to live like this, i rather die, but than turns around and says i want to live no matter what. so what to do.

I pray that what ever you do, your ok with it when its all over , knowing you did the best for him.

[ccironwood]

We have appointments with both the PCP and Cardiologist. I will work with hospice when the time comes. One of the things I will be asking about is pain management. I will be contacting Hospice. They were really helpful to me and my Dad when my Mother was dying of cancer.

My Dad never, since the blood loss in October, has once said he does not want to go. This was even before we knew his prognosis.

[LivingInHope]

I think every one who knows they will be with the Lord when they die wants to leave this sin-cursed earth, though many fear the process of dying, and those who trust His perfect timing won't try to hasten that glorious day by more than prayer.  

You hadn't specifically mentioned blood loss before- do they know what caused it?  Are you now then, from your research, anticipating your decision will cause pain management to be required?  Are you absolutely sure he is 100 percent dependent on the electrical impulses from the pacemaker for all his heart beats?

[heartfluttersflyawayplz]

can i ask how they know what stahe he is in. they have never gave us a stage where shes at. I know my grandmother had it to but she died of a stroke, so can they tell you how long they have in a ceetain stage of it?  

[ccironwood]

You can tell by the symptoms. The stages vary. With Vascular dementia it drops in steps. With Alzheimer's it is gradual. There is really no exact time frame. If you go to alz.org they have a very thorough explanation on the stages. Vascular Dementia and Alzheimer's can progress together.

In April of '07 he had CHF requiring a stint. After that he was put on Plavix. After taking a fall in his home last August, he was taking all kinds of otc medications to ease his soreness and back aches. They all contained some form of aspirin AND he was taking aspirin throughout the day. Non of his doctors nor I were aware of this. He lived alone. This caused severe ulcerations in ulcers in the stomach and pyloric canal. Necessitating 3 units of blood.

Since his body has already been compromised from the CHF and now the loss of all of this blood, the dementia increased by leaps and bounds.

I'm not sure what type of anestesia was used for his colonoscopy or the EDG but, from what I've learned, if it was the type used to inhale, this too would/could increase the progression of dementia.

Since my Dad has move in, I monitor all of his meds. I see his decline almost daily. So far it is more mentally and physically he is less and less steady on his feet. This will never change for the better.

[LivingInHope]

Is he off the plavix now?  Are they monitoring his ferritin (iron stores) to be sure an iron deficit is not contributing to his symptoms?  How are his B12 levels?  Is he taking anything like co-enzyme q-10?  (See PM)

Is he on anything like lorazepam?  My grandma was on this and I weened her off it- I think it helped with her thinking processes to be off it as some medicines (like that one) tend to have a greater accumulation in the bodies of older persons and can have serious consequences to mental clarity.  

Also, getting her cholesterol in better control with a statin and diet helped as well, as her cholesterol was over 300, I believe, before my dad moved her to live with me prior to her leg amputation.  We even thought that with the leg amputation, as sad and painful as that was for my grandma to go through because of her peripheral vascular disease problem, helped with the blood flow to her brain.

[ccironwood]

He has been off Plavix since the internal bleeding in October. The only meds are for bp, & an antidepressant. He does not have what your grandmother suffers from. Vascular dementia is progressive. His B-12 levels are in line. His cholesterol in not elevated. His memory is not the result of his meds. The one symptom of vascular dementia is a depletion of motor function. This is progressing.

Thank you for your input.

[heartfluttersflyawayplz]

does the b-12 have anything to do with dementia/alz i know my mom gets b-12 shots once a month they say her body does not hold it.

[LivingInHope]

I'm so glad your dad does not have high cholesterol!  What a gift not to have to struggle with that issue at this time!  What about his triglyceride level, as high levels are thought to contribute to plaque formation?  Is it in normal range?  Was there a plaque blockage precipitating his heart stent?


I'm sorry if I gave the misimpression I thought he was suffering from PVD (what my grandma had prior to her going home to be with the Lord in 2001).  I more was aiming at a common denominator of dementia due to an impaired blood flow (including the oxygen it brings) to the brain, which was partially reversed, I feel, in my grandma's case with adjustments to medication, diet and increased blood flow to the brain post amputation.

She suffered from CHF, as your dad did/does and also took blood pressure medication to try to control hypertension, the latter of which, as you likely are aware, can contribute to the ischemic changes in the brain.

Now dementia is characterized by deteriorating function of the intellect and other skills that are cognitive.  I read it may involve a progression in the deterioration of memory, thinking, personality, behaviour and motor function.   Vascular dementia being a common form in the elderly owing to cerebrovascular disease.  With your last statement to me about your dad, are you saying you feel the one symptom affecting your father from his disease is motor function?

My parent, offspring to the grandma I've spoken of and the grandpa who had Alzheimer's I mentioned, has multiple ischemic changes in their brain, with many small infarcts.  My parent too takes blood pressure medication.  On plavix now, post diagnosis of TIA, I feel God previously used the flaxseed oil capsules they were taking regularly to prevent more major events from occurring, as those OTC pills have mild anti-platelet coagulation properties.

Not in the end stages of vascular dementia, as your dad is, however, they do suffer from a lot from balance issues, swaying, feeling dizzy, affected by walking in shadow.  I wonder if any of their issues could be issues with your dad that could be worked on and help in some small ways with his unsteadiness on his feet?  There are many things contributing to my own parent's balance issues.  They are working on the dismal neck situation with physical therapy, one factor that affects balance.  

Also, in the past there's been major vestibular dysfunction & one ear doesn't vibrate.  Vestibular problems can cause balance issues but can be worked on in therapy.   To the amazement of my parent and the rest of us here, recent testing with an ENT with a VNG came out normal- a gift from God!  

Also, one thing my parent doesn't want to do is get a hearing aid, though hearing properly is another thing that helps with balance.  It was suggested to my parent that perhaps they might use a cane as a kind of a third leg for balance to help when walking, though they rarely utilize one.  Perhaps your dad is already to the walker stage?

[LivingInHope]

Have they ever suggested giving her sublingual vitamin B 12 drops as well?  I've heard that absorption does not happen as easily of the B vitamins in the elderly.  Please see PM for some important info about B12 deficiency and also info about co-enzyme q-10.

[heartfluttersflyawayplz]

thank you so much for being so sweet to send that to me it helps to see all of that info.  wow i will check into the drops never heard of them. do you get the drops from dr or health place.   i keep a eye on my b-12 because its been low because of anxiety had to get a shot for 8 weeks, its ok now, worries me if it drops because of my mom i not want that , but my grandmother had it (my moms mom) and now my mom . so a very scarey thing

[LivingInHope]

You're very welcome!  They sell it at Walmart over the counter- my parent I was telling ccironwood about had some last night and didn't like it.  It's cherry flavored.  I saw them advertising a sublingual tablet of B12 on tv just recently.  Wow, that is scary!  I hope you are spared!