Follow
Share

Mom has dementia that has progressed very quickly in the last months, but even more so in the last week. She is unable to understand the safety precautions she needs to take; using her walker, especially without carrying anything while she does so, going up and down stairs when she's constantly told to have me with her to do so, trying to do things she isn't supposed to, like moving furniture, unloading the dishwasher, etc.


She's had a-fib for years, controlled with medicine, but just this year she had a heart attack and congestive heart failure. Her heart doctors, I feel, rushed us into getting a pacemaker put in, and her regular doctor was on board with it. I tried to convey the extent of her dementia but no one seemed to think it was a consideration. In the time since then, just over a month ago, she has done fairly well physically, but has declined every day mentally. She took a fall last weekend because she wouldn't use her cane to get around, now she has a bruised rib and has to use a walker instead. She has had false memories, no short term memory, is unable to remember names of people the only three people she sees every day, or at least 5 days a week and has for over 6 years. She even thought I was a "nana-sitter" the other night, and I've been here taking care of her and my dad until he passed away at home in 2016 for 10 years. She also told me she thought she was in the hospital the other night, when she was actually in her own living room. She refuses to accept that she can't make the best decisions anymore, that she doesn't know what's best for her and that she does in fact need help. Sometimes she says things like "with any luck at all I'll be dead soon" and "don't worry, I'll die soon then no one will have to worry about any of this". Any thoughts on whether I am dragging out a life that she hates at the cost of artificial means and her being unhappy because she has to be reminded to be careful and not do things she shouldn't but do things that she should? She's great about taking her meds, except for pain meds. I hate to give them to her if she doesn't need them, but she won't admit she does, so I try to keep on top of the pain. She was very underweight, but we changed her Aricept to 10 mg and she's eating better, actually putting on weight. Some of her problems come from the fact that she has been on homebound status since the first of October, and is stir crazy not getting to go to the theater, shopping or out to dinner. But her own behavior got her another 3-4 weeks when she refused to use her cain and fell and hurt her ribs. Are we just dragging this out with the pacemaker, given the stage her dementia has moved to? She was never what you'd call a sweetie, although she has her moments and never hesitates to tell whoever will listen that she appreciates all I do for her, but she just cannot remember what those things she needs to do to be safe, and to relinquish the control she thinks she has but actually lost long ago. Please help with any thoughts on this. Thanks in advance.

Thanks to every one of you from the bottom of my heart for all of your good input. As it turns out, her doctor said what a lot of you said, the pacemaker won't keep her alive, per se, it just makes her healthier and more comfortable while she is alive. As for the rapid decline, I have learned about the term "anosagnosia" which means there is no chance that she will ever understand or be able to make any changes, she can't even understand that she has this disease or any other problems. Not making it much easier, but I've moved her bedroom downstairs, and am going to look at memory care centers on the advice of her doctor. Not necessarily for right now, but the doctor made it pretty clear that day will be sooner rather than later. I just want her to be safe; my goal was to get her off of homebound status so we can go out and do things again, but she doesn't even remember that people have come to see her, and so she complains that no one cares about her anymore. She will forget everything we do, and I just don't think it's a reasonable goal anymore.
Again, thanks for all of your input, good advice and kind words. I feel like this journey is taking a big turn, and life will change even more for both of us soon.
Helpful Answer (0)
Reply to dpoe56
Report

The defibrillator will not keep her alive. It will try to start the heart but it can not keep her from dying.

I asked specifically because I didn't want to have my dad flopping around being shocked by his defibrillator if he was gone. They said it gets turned off as soon as it is determined he is gone. It cannot start a truly dead heart. That is what his cardiologist told me back in November when he replaced his generator.

Did he lie to me and my dad is going to be brought back even though he is dead. I can't imagine he did, but one can never be certain in this day.
Helpful Answer (2)
Reply to Isthisrealyreal
Report

Pacemaker or defibrillator?

The pacemaker itself won't be a problem but a defibrillator will, eventually. Speak to your mother's lead doctor - her PCP, it sounds like? - about this.

I'm tight-chested myself reading your description of your mother's inability to follow safety instructions. For the sake of your sanity, and so that your hair doesn't turn as white as mine did, mark this: your mother CANNOT follow these processes.

Not stubborn, not reckless, not impatient. The thoughts taking place in her brain do not even begin to take her needs into account. No matter what you tell her, or how often she agrees and promises to comply, there is no possibility that she will remember what she is supposed to do. Stop expecting it.

You can get pressure alarms that will alert you when she has got up from her chair or her bed so that you can get there quickly. You can also consider using baby monitors or even maybe a camera connected to a hub to watch out for her.

If there has been a marked, sudden change in her mental state this does want checking out. You want to rule out a uti, and while you're at it have her and her px reviewed.

This phase of caregiving is so unbelievably stressful, you have my heartfelt sympathy. Please keep in touch whenever you want support.
Helpful Answer (3)
Reply to Countrymouse
Report
dpoe56 Dec 12, 2018
Pacemaker. She was tested for a UTI in the hospital after her fall. That's not to say she couldn't get another, but I actually think maybe she's entered into "Sundowning". I think I'll make an appointment with her neurologist to reinforce my possible decision to get her into a memory care home. This is hell.
(1)
Report
Deactvation may make her fall more often due to syncope
Helpful Answer (1)
Reply to MACinCT
Report

Your mom's pacemaker will not prolong her life once the CHF final stage comes. As someone stated here the pacemaker just helps the heart beat in it's natural rhythm. Some forms of CHF cause a thick muscle layer (in most cases) at the bottom of the heart. This in turn will make the heart to stop pumping. The pacemaker will not or can not stop the CHF disease from progressing.

I doubt if you will be able to find a Dr to deactivate her pacemaker. Dr's take an oath "do no harm", the oath they take is much longer than this, but this is the phase that they live by " do no harm"! Dr's are in the business of saving lives so, I am not surprise that your mom's Drs were on board to have a pacemaker surgery and not consider how far long she is in the stages of dementia. All Drs see is "save lives".

You can rest a sure that when the time comes for your mom's death it will come in it's own time. It is much easier to refuse treatment than it is to reverse treatment.
Helpful Answer (3)
Reply to Shell38314
Report

My almost 91 year old father just had a pacemaker put in a few weeks ago. The cardiologist explained it does not repair the heart disease, just helps the chambers synchronize.
They did not use general anesthesia, they used local and versed so he wouldn’t feel it or remember it.
Dad’s dementia plateaus, then does a step down, then plateaus. The dementia has a life of its own.
At least with the pacemaker he can stay awake to walk, eat, enjoy sports, hoard stuff and annoy people with non-stop talking.
I think you need to talk to the cardiologist to know options, and what they mean-like will there be pain, a stroke, more Falls , stuff like that.
Helpful Answer (2)
Reply to PrairieLake
Report

Did you Mom make any directive in her Living Will as to deactivating it with declining health? Does your Mom have an ICD (Implanted Cardioversion Defibulator) Pacemaker Combo implanted?

While I understand your questioning it, I think you might be facing troubles finding a Dr to deactivate it based on Ethical standards, unless she made specific guidelines to follow in her Advanced Directive or Living Will in advance, but is something to discuss with her Cardiologist. I honestly do not believe that a Pacer will extend her natural life any longer than normal (however an ICD might), for if she simply stops breathing in a natural course of death, the heart muscle will die, and her heart would stop beating naturally anyways, so I don't believe you should worry to much on it, but definitely speak with her Drs on it.

Great Question though! Hopefully someone with personal experience will come along with more info!
Helpful Answer (2)
Reply to staceyb
Report

If it has been a rapid decline in a week, get her checked for UTI. This can make it seem like the dementia is fast tracking decline.

The pacemaker is not keeping her alive. It keeps the heart from beating to slow, which will cause her to be worse off, she would retain more fluids from the CHF and be more tired. My dad has one and it was explained to me that if he dies the pacemaker would keep trying to make his heart work but if he is gone it won't help. Keep the manufacturer's information and when she passes request that they turn it off.

Enjoy what you can with her, she will be gone before you know it. She has multiple fatal illnesses and it happens sometimes overnight.
Helpful Answer (1)
Reply to Isthisrealyreal
Report

Have you considered having her evaluated for either hospice care or palliative care? She sounds like a handful. We walk a fine line with the loved ones we care for. I try to let my husband think he’s in control, when in truth, it’s me. It’s not easy, I know.
Helpful Answer (1)
Reply to Ahmijoy
Report

The general anesthesia may have caused a decline. It did in my late MIL after needing ankle surgery from a fall. We waited 7 weeks but the bones would not knit. Her memory after that surgery was never the same.
Helpful Answer (4)
Reply to Riverdale
Report

Subscribe to
Our Newsletter