Now or Later?

NYCalz · July 17

You know the heartbreak and loss is inevitable. You know that your LO doesn’t want to get to experience the late stages of dementia. You know that he always expressed that if he ever “got like that”, kill him. You know that he wouldn’t adhere to the lifestyle changes to keep the progression at bay. You knew that he was always sensitive and never good under pressure. You know that he feels fear about the changes he’s been experiencing for the past 5 years.

The decision was made together to not pursue the infusions. Instead we chose to keep enjoying life as long as possible. We travelled, ate and drank, and now… blood pressure and statin have been discontinued. Keeping the max dose of Sertraline. Recently added mementine (titrated from lowest dose to 28mg) to the 23mg of donepezil which he has been on for about 2 years. He didn’t tolerate the 28mg so we discontinued it. Changes and progression keep coming and now questioning if donepezil is worth continuing.

He’s been “off” the last couple of days. Took his blood pressure tonight at it was 152/100. All I keep thinking is, “what do I do???” I know this is something that’s been asked and discussed time and time again. But right now, this is where I am. Do I let nature run its course? Do I put him back on the BP medication and keep him longer even though he continues fading away weekly?

What i really want to say to you is, I don’t want to lose my husband even though I know I will. And I know that it’s coming now , or later, cardiac/vascular event, or dementia. And I just want something or someone to whisper in my ear, “you’re making the right decisions.”

Goodlife2025 · July 17

@murpc76 oh you sweet sweet soul - "YOU'RE MAKING THE RIGHT DECISIONS." This is so very hard and while I am not currently in your shoes. Conversations we have had here as well. When I am faced with these hard days ahead I will stay in prayer and try to remember I am honoring one of the last really meaningful things my DW has requested of me. Please keep supports near you - is hospice a part of your journey?

Lethe · July 17

I think each person has to make these decisions on their own and I agree it’s not easy. For me, my DH (around stage 5) is still taking the BP and statin meds because I can’t face the possibility of something even worse like a stroke. And I mean a stroke that does NOT kill him. He is still mostly independent with ADL’s. When that changes I might think differently. But for now my fear of a dibilitating stoke is worse than my fear of his slow deterioration or even death.

Biggles · July 17

it is such a lonely sad road, these decisions are yours and yours alone. Whatever decision you make it will be the right decision, I can hear the love in your plaintive message. I had this discussion with my hairdresser who comes to our place; she’s good to talk to. She asked me if I was ready for what was coming, through tears I said no I can’t bear the thought of loosing him. I gave our Doctor a nil resuscitation instruction a few months ago but when the time comes I don’t know if I will be able to withhold help if it’s available. I can ask for intervention at any time. My DH he is becoming more feeble and confused everyday, I had a scare the other night, spent most of it in tears just wondering what to do. Morning came and there we all were again and I was relieved. He has VD, Aphasia, a heart murmur and high blood pressure. It’s awful. I understand my heart goes out to you.

NYCalz · July 17

https://alzconnected.org/discussion/comment/277578#Comment_277578

Biggles,

Yes, a “scare” and any new changes always send me down this road. Then the next day, like nothing happened. You’d think we get used to this. Thank you for your kind words.

NYCalz · July 17

https://alzconnected.org/discussion/comment/277565#Comment_277565

Lethe,

So true about having to make these decisions on our own, but there is always that inner voice that second guesses you. Such a long road of decision making wears you down.

NYCalz · July 17

https://alzconnected.org/discussion/comment/277561#Comment_277561

Goodlife2025,

Thank you for your kind words. Hospice will be part of our journey, but not quite there yet.

ronda b · July 17

https://alzconnected.org/discussion/comment/277595#Comment_277595

Why are you waiting on hospice? Can you get an evaluation to see if he qualifies?

iowagirl1961 · July 17

Thank you for posting these thoughts as I wonder about the same thing. My husband was supposed to have a colonoscopy last year and I thought, why? If he had cancer I would not choose to treat it. He takes metformin for type 2 diabetes, sertraline, donepezil and mementine. He is still physically active but so confused about everyone and everything and I know he would hate being in this condition so much.

annie51 · July 18

You need to tell yourself you’re making the right decisions, because you’re making these decisions out of deep love. I, and many here, know what you’re feeling and have experienced it ourselves. My DH had said to me many times that “if i get like that, just shoot me. I agonized over the decision to skip the last colonoscopy but it was the right decision. I agonized over placing him in MC but it was the right decision. I had to write up a DNR order for the MC - of course it was the right decision. If he was really aware of how he was living he would not want to live. When he had a heart attack and was transported to the ER from the MC and they were intubating and trying to resuscitate him, I had to verbally confirm to them that I wanted them to stop. I actually hesitated for a few seconds because I didn’t want him to go - but it was the right decision. I knew it was the best thing for him. Trust yourself - as long as you’re making the decisions out of love, trust yourself.

Biggles · July 18

https://alzconnected.org/discussion/comment/277639#Comment_277639

Annie Thankyou so much for posting. These have been my thoughts for sometime. I have taken out a DNR with our doctor but she has said this can be missed by medicos in the heat of the moment. She has said keep his enduring POA on hand if he has a heart attack or whatever and give the instructions if that’s what you want. I want my beloved DH back but that’s not possible, I now just want this tormenting half existence of his to finish. No more invasive surgeries and only minor medications for quality of life as such. We are not up to MC yet that will depend on how much home help we can get as we progress. I pray for the end to come before that. @murpc76 know the decisions you make are the right decisions, believe in yourself.

JulietteBee · July 19

@murpc76, my immediate concern was stated by @Lethe. In taking our LOs off their blood pressure med, they could have a stroke. A stroke that does not cost them their life, but one that robs you both of any remaining quality that may have existed prior to the stroke.💔

However, ANY decision you make will be one made from a heart of love. You may not now have a written out plan of action, but when the time comes, you will find yourself expressing a plan, eloquently and with ease. Trust your gut!

LJCHR · July 19

This is such a hard decision and I feel your pain. My DH has recurring UTI's and infections. He just underwent oral surgery with light anesthesia for a very badly infected tooth followed up a few days later with trip to emergency room because the infection was still there. His son has asked many times when do we stop the antibiotics? All of our decisions are very hard and a person shouldn't have to make them all by themselves, but it is our life and we try to make the best we can. Follow your heart and gut - there are no WRONG decisions with our situations. God be with you and give you strength!

Sunfish47 · July 20

My DH 84 yo, stage 6, at home with me, has had an aneurysm of his ascending aorta, measuring 5.2, for the past six years. The dr was watching it with a yearly ct scan, and it has not been getting larger, and DH is on BP med. At last year’s checkup I asked if he should have the ct scan again. Dr said okay, but then I said “if it’s enlarged, what will we do?” Dr said “nothing.” And I said “okay I agree” cuz I’m not putting DH thru heart surgery or stents or whatever at this point. BP med is okay, but no procedures.
DH had hiked portions of the Appalachian Trail a few times in his 50s and loved it, and always said if he was diagnosed with a terminal disease, he’d prefer to go to a mountainous portion of the trail and throw himself off. I know he wouldn’t want to be living like he is.

terei · July 20

So I assume no scan? Once the caregiver decides that treatments and extending life are no longer in the picture, diagnostic procedures simply waste time and money and generally cause aggravation for the PWD and the caregiver.

Sunfish47 · July 21

terei: yes, we are not doing the ct scans any longer. He is not in pain, and the BP med he gets daily should stave off any cardiac events for awhile.
He is cognitively on a 3-5 year old level, just a shell of the person he used to be - so at this point I would only wish to allow tests or meds to alleviate pain. Our two adult daughters (who are DPOA for us both) are in agreement.

BPS · July 22

When my wife got on hospice the nurse was very good. We talked about all the medication my wife was taking and the nurse told me what hospice would cover but any of the other medication I wanted her to stay on would still be covered by her advantage plan. Over time and seeing her get worse and knowing that the other medications may be helping to extend her life but not make it more comfortable I slowly one by one talked to the nurse about stopping them. Now she is only on a couple of comfort medications. Even when you know how this ends it is still hard to say stop helping her live, but I wish I would have done it sooner because now she is bedbound and either talking with her hallucinations or mostly unresponsive to being talked to. Awake for about 4 or 5 hours a day but not really there.

dayn2nite2 · July 22

Personally, I classify BP meds for high BP as a comfort medication - because he will feel poorly without it. I would discuss with his doctor possibly putting him back on that. What good is it when you wake up every day with a headache or just feel lousy?

Answers needed · July 27

Your expression of this dilemma hits home for most of us on this conversation. I am so sorry that you are struggling with the decisions that you have to make. Your love for your DH is obvious.

I am asking similar questions. Other than his loss of memory my DH appeared physically very healthy and active up to 8 months ago. His lack of energy has led us through many tests and procedures which have indicated that he needs to be on oxygen supplementation continuously. This means that we are restricted from being away from our apt. because the O2 tanks don't last very long. (We have been waiting for a test that will tell us whether he is a candidate for a portable O2 concentrator which will give him a bit more freedom) In the meantime, he resists using the O2 and is very depressed. He is taking an antidepressant, but I feel that much of his depression is related to the hit on his self-image from having to carry an O2 tank everywhere he goes. HIs doctor says that the only way to keep his lungs from getting worse is to use the O2 all the time. From what he tells me, he doesn't feel any worse when he doesn't use it. I ask myself "which is worse: to prolong his life or to have a better experience of life now?"

Thanks for listening. I appreciate all of the answers given in this thread and will try to take them to heart. The knowledge that I am not alone is helpful. Bless you all.

Maru · July 27

I understand your dilemma. Those kinds of questions have been on my mind also. Sadly, the danger with high BP is a stroke, and to make the decision more difficult is the fact that a stroke frequently does not kill but rather leaves the patient with physical or verbal incapacities. For both the caretaker and the patient, life then becomes more difficult. Were this cardiac drugs you were talking about, I would have a different answer

LisaLH · July 28

I too am having the same questions for my dad. He is stage 7, completely incontinent, needs to be bathed and dressed but he feeds himself and is mobile. He can talk even though a lot is word salad. He is on hospice. He is type 2 diabetic on 2 oral diabetic drugs and blood pressure meds. We just stopped his insulin he would get in the evenings because he rarely needed it. These decisions are so hard. We have to make them and not look back. You are right, I am right and whoever has to make these decisions are right. I wish you well.

Now or Later?

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