How do I make this decision
My DH has had Alzheimer’s for about six years. He eats well, is somewhat responsive but does not engage in conversations, forgets to bathe and brush his teeth etc. He is not incontinent. We have hospice in once a week to help him shower, which he objects to, and a nurse to check vitals. He also has congestive heart failure, PAD, chronic kidney disease. He has an ICD that the battery needs to be replaced within six months. The nurse that contacted me asked if I wanted the battery changed or just see how things go. His heart is totally dependent on the ICD. I of course said we need to change it because I would be signing his death certificate if I said no and I cannot do that. Has anyone else had this situation arise with their spouse? I know I made the right decision but what am I keeping him going on for if he is miserable. I know he would hate the way he is. Any help would be appreciated.
Comments
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I have been just where you are. Luckily the replacement question was posed to my husband who, w/o hesitation, said replace. My husbands philosophy was once you quit breathing you have no more choices.
The replacement was easy.
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There was a similar thread not long ago that had a lot of responses. I think you may find it helpful. If you use the search you should be able to find it. It was titled - tests and medications. Lots of options to consider. What a tough choice.
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Have you checked with hospice to make sure that is allowed? Because he may have to be removed from hospice to have it dove and then re-enter hospice the next day. Pay attention to whether it will be paid for while on hospice
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Whether to provide life sustaining treatment in very late stage dementia is one of the hardest decisions a caregiver needs to make. I know, my DW is in Stage 7f, the very last substage. I believe one can only follow the heart, there is not way to consider the treatment in an objective, clinical way. I hope you find peace with your decision.
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each caregiver has to make difficult decisions based on what you can live with. In your post you said “ I cannot do that”. So go with your gut. 🙏💜
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Always consider how you will feel later on about the decisions you make today. Take care to not do anything you will regret later.
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Do you have any idea what he would want? What would you want done for you if roles were reversed? If you replace his battery, you are committing him to stage 7 and a death from aspiration pneumonia and/or gradually wasting away. Everyone will look at this differently and of course, people will judge you regardless of the choice you make. Personally, I would prefer a quick cardiac death over stage 7 and a lingering slow death.
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I agree with midge333. People will always judge even though they don't have a clue what you and your husband are going through. And do not regret the decision you make. I have to say, this experience has shined a whole new light for me on assisted suicide. Knowing what I know now, If I ever conclusively come down with dementia that would be my route. Not necessarily because of my pain and suffering but because of what it does to the ones who have to take care of you.
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I do not envy you the responsibility of this decision. I am so sorry you're facing this.
Does hospice have a chaplain or counseling social worked you could discuss this with?
Some thoughts that come to mind:
What is the experience of living with this device like for him? My own BIL declined the option as it can take away the option of passing gently in one's sleep. He also said the shocks are unpleasant in some cases. BIL was an ER doc and had witnessed deaths of all kinds. In the end, he did die too young and at a point where his quality of life was good, but he did get the death he'd hoped for.
How complicated is the replacement and would he be able to get through that process?
How advanced is his kidney disease? Is he at risk of potentially needing dialysis? Is that something you would move forward with?
If you did do a battery replacement and down the line his condition deteriorates to a degree you regret the decision, would you be comfortable deactivating it?
Wishing you peace with your decision.
HB2 -
Either choice comes with issues. Personally, although my mom on hospice did not have an ICD, I was grateful she died after a cardiac event, and did not have to march through every moment of stage 7. If she had an ICD, I knew her wishes would not have been to do any intervention that would keep her alive. When she had her heart attack, we just kept her at the NH comfortable and pain-free and she died 3 days later. They were required to ask if I wanted her transported to a hospital for intervention and I said no. I have never regretted that.
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I have been pondering this all day. I am sorry you are in this situation. I think NOT replacing the battery is the kindest approach to this situation. If his battery runs out, he will die a quick and painless death from a sudden cardiac arrhythmia. Your DH has at least 2 terminal conditions (Alzheimers and congestive heart failure) and may die from one of these two conditions before the battery runs out. Also, how will he tolerate the surgery and potential hospitalization when he cannot understand what is being done to him?
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@barbara622 you say battery will expire in 6 months. I know this decision is hanging over you. However, is this something you can delay until closer to the actual expiration date of the battery and based on your DH condition in, say 4 months, you can decide what is best for you both?
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I found this website helpful.
"…“Many patients thought that if you turned off their ICD they would die instantly,” she says.
That simply isn’t true. Turning off an ICD won’t hasten death but it will mean that a patient who is already dying won’t receive a shock if their heart is failing…"
"Will I have a more painful death if my ICD is deactivated?
No, you should have a more comfortable death without experiencing painful and distressing shocks unnecessarily."
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I posted above but wanted to share more. I hesitated but it may be helpful to some. My husband late stage 6 had difficulty swallowing. He aspirated and was having trouble breathing. The MC facility asked if I wanted a chest X-ray. She said if they found something on the X-ray they would have no choice but to transport him to the hospital where they would do a deep suction of his lungs and-or put him on antibiotics. He would have been in the hospital for a few days. If the antibiotics worked they would transport him back to the MC facility. I made the difficult decision of no X-ray. He died the next afternoon. I knew his wishes. I knew with his swallowing issues it would have happened again. I know in my heart I made the right decision. For him. Because I loved him enough. I did not want him to suffer one more minute than he already had. I would have wanted him to make the same decision for me. I have no doubts he would have. 💜
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@SDianeL
I agree with midge's opinion of this being the loving choice.
That said, this may not be a universal rule or policy. It might even be dependent on what's included in your DH's Advanced Directive or POLST.
My dad had difficulty with swallowing as well. His geriatric doctor at the MCF did order X-ray and blood work. His imaging was positive for aspiration pneumonia; we elected to have a hospice evaluation rather than transport to the ED. He died hours before this was completed. Peacefully and in his sleep.
HB4 -
DH and I spent careers in healthcare and so were always very, very clear with each other and our kids about what we did, and more importantly, did not want.
He is currently early stage 7 and in hospice. We will skip the Covid booster and the flu shot for him. I am hesitant to admit that I am a bit envious that you have the option to not replace the ICD battery. I spend my time hoping for an off ramp from this terrible path.
DH was terrified of being in this stage of the disease. I wish I could spare the both of us this drawn out ending.
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I feel like I am walking by a well - there is my LO - at the bottom - no hope of getting out - they have faith in the afterlife with their God .
If I wasn't removing something medical that WAS working - which would be illegal- not replacing it is letting their natural body do it's thing.
If that lessens the time they suffer - immobile , muscle contractions … and the POLST they updated at the beginning of the journey said let me go…. then that's kindness in my book.
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I did check and he would need to be taken off hospice in order for Medicare to pay for the procedure. Thank you!!
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Thank you so much for your insight. I hadn’t thought about it that way. I think I would prefer the cardiac arrest rather than a slow stage 7 passing too.
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I know exactly what you mean. You feel so guilty of wishing this loved one doesn’t have to go through this long process. It’s never easy but we do the best we can.
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Thank you so much for this information. At least I can have peace if I go this route.
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💜🙏
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I am so sorry you are going through this. I don’t know if you had discussions with your husband regarding advanced directives for medical care. Think about what he would want. The end stage of this disease is horrible. I watched a love one suffer for years on end. If you can spare your husband this, it is truly the last gift of love. In the end, it is you that has to live with this decision. Do what you can live with without regrets. This is a lesson for all of us to have these difficult discussions with our loved ones in advance of what’s to come. ♥️
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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