Does this feel like nothing more than a death watch?

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I realize that my title is harsh. I wanted to be pointed in speaking my feelings. If I sugar coat it, then the point is lost.


Mom goes thru frequent episodes of extreme exhaustion. This causes her to miss most every therapy session. She cannot even find the energy to hold up her head...forget work with speech or occupational therapy.


So, she is actually losing ground. Her speech is less coherent, her ability to sort out what is happening is getting worse


I am feeling more and more like this is just taking care of her body ... waiting for the end. I have held out the hope of a recovery back to some level of competence....I don't any more.


Does it always come to feel this way to caregivers? With the loved one "gone" ... just the care of the body remains. I cannot help but to wonder if this is the way this will be...for years.


How are others dealing with this? It doesn't feel right to me, yet it feels like the truth.


Mom had told me that she wants to drive off with me in an RV and see as much of the country as there is time left. I know that dream will not come true now. It's been 9 weeks of episodes of "crashes". There is nothing the doctors can do. I accept that now.


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Dustien - that's an interesting idea. I wasn't aware you could reuse the pacemakers, even if it's not in the U.S., that's still a great idea.

I was informed that all medical devices are removed prior to cremation, because the pacemakers can explode when exposed to the high heat of the cremation chamber. I have no idea what happened in Dad's case, but while sifting through his ashes to find the ID tag and remove it (so we could scatter them without them being traced back to us, though I didn't much care if we got fined for it)....I found a couple of springs and pieces of metal too small to be anything but part of the pacemaker. I didn't find anything like that in Mom's, so I can only assume that was what was left of his pacemaker and that it wasn't removed.
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Dad received a pacemaker in late August. It did help him feel better the last three months of his life..gave him more energy, along with the 24/7 Oxygen. It might be able to help your mother... it's worth asking the Doctor.

After Dad died, I asked that the pacemaker be removed before cremation and was able to find an organization online who could use it to try to help those in underdeveloped countries (it's illegal to reuse them in the US) who can't afford a pacemaker. After all, it was built to last 10yrs, and dad only used it 3 months. He would have loved knowing that it was donated for a good purpose.
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Wow, another ironic thread, in light of the recent deaths of George Michael, Ricky Harris, Carrie Fisher and Debbie Reynolds, with George, Ricky and Carrie deaths were a result of heart attacks. Very sad.
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I'll chime in here and add that my mother's situation was very much like yours, Katie - fairly regular heart rate when resting, elevated a little when up or walking, with periodic, unpredictable bouts of 150+ beats per minute. The pacemaker regulates the heartbeat - it does not replace or eliminate beats. It simply keeps it in rhythm as it is programmed to do. Mom stayed at a regular 72 beats per minute for the rest of her life.

What a pacemaker will *not* do is keep a dead heart beating. If the heart stops, it stops - the pacemaker will not re-start it. A defibrillator does that. Mom's heart simply stopped one day and she collapsed - the pacemaker was unable to do anything about that.
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I know my uncle has A-Fib and has an implanted devise. I also know he had fainting spells and had to periodically have his heart shocked back into proper rhythm at the hospital. Perhaps the device is not a classic pacemaker, but whatever it is it works for him. Is your cardiologist exploring the options aggressively enough?
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Katiekate, I have that accelerated heart beat which turned out for me is caused from a minor leaking heart valve. Blood pressure meds is helping that. And there is medicine to help fix the leaking heart valve once the problem gets worse. It was quite scary when one day my heart was racing like it was in NASCAR and I couldn't get it to slow down, so my doctor took an EKG and immediate sent me to a heart specialist.

Regarding the exhaustion, for me I had way too low B-12 level. I started B-12 shots once a week for a month, then went on B-12 pills. They really helped :)
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Katie, I don't wish to argue or challenge you on the purpose of a pacemaker. But it does regulate a heartbeat for certain conditions, A-fib being one. It can sustain a low heart beat. Some who lacks a heart beat at all needs much more than a pacemaker!

Has a cardiologist told you that a pacer wouldn't help?
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A pace marker creates an electronic pulse when too much time has elapsed since the last one. It does not surpress all the additional heart beats

Her resting rate is about 80 ...normal. Up to 90 when walking. But, recorded at over 170 during an episode. This is a short span of less than a minute...then back at to normal. But, of course...the knock-on effects linger for days.

If you figure the number of minutes in a whole week....the episodes are very rare...only 1 minute out of a whole week. But...the cost is so huge. It is costing her quality of life.

No..pace maker works for someone experiencing LACK of a heart beat....not mom's problem at all.
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My dad had heart failure for the last 3 years, along with diabetes, COPD and prostate cancer. At one point we though he was on the verge of death, but the Doctors worked with him to bring him back from the brink and he had 3 years more years of life, at times really good, at other times not so good, but all worth living. So don't give up just yet. Even here near the end of his life, after we put him on hospice, he had a rally that lasted until he fell and broke his hip and died three days later. He was happy and had a great pre-thanksgiving feast with family at the new Assisted Living we'd move him into just 6 weeks previously. We could never have done it without the help of Hospice. In the middle of the night after the feast he fell and broke his hip when no one was around. He was able to immediately call for help and the hospice was contacted. He was taken to the hospital, operated on, home the day after and so glad to be out of the hospital. Sadly he passed the evening he arrived back to his little apartment. But he went fast, and relatively peacefully. He was ready, and mom came and got him of that we have no doubt. So it ended....but not sadly. It was much better then simply "death" watch, thanks to hospice and the right meds and lots of love. He was 87, had a lot against him, and yet was kept out of most pain and mostly content in the last month of life. We couldn't have asked for more. Hope your situation turns out the same...
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Heart failure is a terrible disease to watch progress. Having just watched my loved one suffer terribly for the last 2 years, I honestly feel like I would rather slip off gently at the earliest possible than to struggle with high oxygen rates, the rattles in my chest, the fear -- it was so awful at the end. In hindsight, his pacemaker was the wrong move. I hope you don't go that route. How about contacting hospice and see if your loved one is eligible, as they give support to the family as well. Hospice was able to bring our family together to face what we did not want to admit was happening.
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