Stressed / anxious especially since I can no longer share

aconite

My DH still is my best friend - but then he's really not.  I used to talk decisions over with him - but now it's usually "whatever you think" as a reply.  He was the person who calmed my anxieties/worries - and now any mention of things that have me worried causes him confusion and anxiety.  So even though he's still in the early stages of this disease, I feel the loss of what used to be already.

He has many other health issues. Here's the latest... The cardiologist recommended an echocardiogram, and then based on those results - a stress test.  He was cooperative for the stress test, but couldn't remember why he was there or why he was having it done (there are several wait times between parts of the test).  We managed OK and I think I calmed his fears to some extent, but that break from routine made him confused and anxious for the rest of the day.  They called with the results of the stress test and think there's a blockage, so a heart catherization procedure is next.  Before they went ahead to request scheduling for the test, he had to say he was willing to do it (I do have medical POA, but he still retains considerable executive functioning, so he had to consent.  He did look to me for guidance, and I told him we should go ahead).  It's only been a couple of days since they called with the results, so the procedure isn't yet scheduled and I think he's forgotten about it.  But I haven't!  And I know that many heart caths are done successfully and that's it's not considered a major procedure, but I find that I'm anxious/stressed/worried about him having it done.

Once they have it scheduled, I'll need to manage letting him know and making sure he doesn't eat as required before the procedure and manage the adjustments to his insulin.  So, I'll need to make him aware of the procedure and then watch him carefully for pre-procedure compliance.  Until then, I don't plan to mention it. He will probably ask me to explain and then almost immediately forget what I've told him  So, I need to work on keeping my anxiety at bay - especially since when I'm anxious, I find I'm not as patient - and patience is still a work in progress for me.

I realize from reading in the forum that my problems are small compared to some since he isn't far along in this disease. But even now, the loss of what he used to be is there.  Thanks for letting me talk - even if it's virtually.

Ed1937

First of all, your problems are not small. There are no small problems with this disease, and they all add up.

Just keep in mind that if you appear to be anxious, he will pick up on that. Try to be calm. This is something they do every day.

And also be aware of the fact that when the procedure is over, he might come home a little more progressed than he is now. That is not uncommon, and in a few days he might be back to where he is now. Sorry you're dealing with this now.

M1

Aconite:  A heart catheterization is in fact a major major procedure, period, bar none.  They will ask you to consent that if something goes wrong, they make take him straight to cardiac bypass surgery.  Are you sure you want to consent to that?  I would ask a LOT of questions.  Starting with:  is he having chest pain?  Or was this done despite the fact that he was asymptomatic?  Also:  most coronary artery disease can be successfully treated with medication these days, there is no advantage to surgery or even stents unless there are multiple blockages in multiple arteries.  Why not try medications first?  Very, very important question in this situation.  There certainly may be reasons to proceed, but I would think long and hard.  This is NOT minor.

dayn2nite2

Bluntly, death from a heart attack is kinder than death from dementia.

aconite

Thank you for the responses.  I have a lot to think about.  I'll be calling the doctor tomorrow to discuss further.

Suzzin

Also, anesthesia can cause a worsening of symptoms. Sometimes the decline lasts a few days and they bounce back, but in our experience each time the "bounce" was to a reduced level from the previous. I don't know anything about heart cath procedures, but please talk to the doctor and find out if it's urgent.

M1

Sounds stupid, but it's relevant here:  it's hard to make a person without symptoms feel better.

If he wasn't having symptoms Aconite, what has already gone wrong is that you DON'T do screening tests OR follow-up tests the same way in someone with dementia the way you might in someone without dementia.  You mentioned that the stress test was ordered in follow up to an echocardiogram:  why was the echo ordered?  That is also an important question to ask.

Maybe one of the discussions you need to have--with his primary care person--is whether a referral to palliative care is indicated, and if not now, when it would be appropriate.

I'll quit preaching.  but do let us know how it goes.

jmlarue

From the patient's perspective, I have to agree with M1 that cardiac intervention is not a minor procedure. I have been through two of these procedures - both times as a result of heart attack. The first time around, I was kept reasonably comfortable during the procedure, but an hour on the table with both arms restrained and fully awake (so I could respond to questions about unusual symptoms I might be experiencing) made me extremely fearful. I don't have dementia. Given my experience, I would NEVER consent to this procedure for my DH. I believe it would be terrifying to the point of cruelty to put him through that. Yes, refusing this intervention may well mean that he could suffer a debilitating or deadly stroke down the road, but just know that there are no guarantees that this won't happen during that procedure, either. 

In the first intervention, the surgeon closed the entrance wound into the artery with a plug of cholesterol before sending me to recovery. I didn't know what a blessing that was until I had the second procedure a few years later. The second time around, the surgeon did not close that wound until I spent a couple of hours in recovery. During that time, I remained at risk of life threatening hemorrhage. The worst part was the surgical nurse applying the mother of all horse bites to my groin for 20 minutes to prevent me from bleeding out while they closed that wound. The pain was absolutely torturous and they had to give me multiple IV injections of narcotics until I finally lost consciousness and stopped screaming. There were 4 large adults holding me down. This would be the height of inhumane and cruel treatment for someone without the mental capacity to understand that enduring this procedure is a life and death matter.

Just be aware that the Cardiac Surgeon will not be entirely forthcoming with the "worst case scenario" in any of this and most won't consider the trauma such a procedure can have on a person with dementia. Consider carefully before giving your consent. This is NOT the minor procedure you may have been assured that it is.

harshedbuzz

aconite-

I am so sorry for your situation. In many ways, this sort of responsibility for decision-making on behalf of a PWD is some of the hardest work of caregiving. 

IME, specialist physicians tend not to fully appreciate dementia is a life-limiting illness or that a PWD may not be able to cooperate with the procedure or aftercare. 

Aside from the risks of hospital psychosis during his stay, and a risk that anesthesia could trigger significant progression in his dementia meaning you leave the hospital with a very different man than the one you brought, there is the risk the simple procedure could escalate to a bigger deal. 

I would consider it to relieve pain, but otherwise I would consult with the PCP if s/he is someone you can talk to openly. At a certain point, we stopped much of dad's specialist care. We ditched his cardiologist and AMD doctors fairly early on. We also stopped testing beyond bloodwork as we didn't need to collect data on which we would not act. 

HB

Kibbee

I’m with Dayn2Night2 on this one.  Other than my DH’s neuro-cognitive disorder he is in good health.  No cardiac issues or other organ disorders, no diabetes or other systemic issues. My biggest fear for him is that his mobility and cognitive function worsens significantly, while his heart, lung and organ functions keep him alive but in a greatly impaired state.  Frankly if he were to not wake up one morning, I would be very sad but I would also recognize it as a mercy in a way.

There is no cure for DH’s condition.  The last testing he went through was to determine if he had Normal Pressure Hydrocephalus.  He did not but if he had there would have been treatment that could have provided some relief for his mobility and incontinence issues.  Going forward I will I be selective about any medical testing or procedures recommended for him.  If he is in pain and diagnosis and treatment would bring relief, then yes, it must be seriously considered.  If it is to address something asymptomatic,  I’d have to really understand the short term consequences and the long term benefit before I would put him through it.  

PookieBlue

Hi Aconite,

I’ve been reading posts for just the last week. My DH had a heart attack about five years ago. He had already been experiencing cognitive issues, but hadn’t been seen by his primary care doctor for that. He had major GERD symptoms early on a Friday morning. He’d had symptoms before, but never that bad. I took his vitals and gave him Alka-seltzer. I asked, but he did not want to go the ER. He said he was improved and I went on to work. He seemed fine that weekend, although had mild symptoms. A few days later he had another attack while walking the dog. He told me much later that he had lain on the sidewalk for 15 minutes, cars drove by nobody stopped to help. He was able to walk home. I was playing with my Karaoke machine and he just told me he was tired and was going to lay down awhile and he did. He got up a couple hours later and seemed his normal self. When he told me later what had happened, I told him I would take him to his doctor the next day, but he didn’t want to do that. I said he should at least get an EKG, but he didn’t want to. He called me at work the next morning, said he had a little GERD after eating and asked me what an EKG was. I said I’m coming home now and taking you to urgency care. We spent 7 hours in UC and then was admitted to the hospital. He had a cardiac cath and RCA (Right Coronary Artery) stent placed. His artery was 99% occluded. He had AAA (Abdominal Aortic Artery) graft surgery three month prior. The night of his heart surgery, he pulled out all his IVs, urinary catheter and EKG wiring. He said he was looking for his clothes so he could go home. He was standing in copious amounts of blood when the nurses found him. His heart seems to be functioning properly ever since so we made the right decision for him at that time. It sounds like you need more information about the testing. It worked out for us. Sorry you are having to go through this experience.

aconite

Thanks so much for all of the replies.  I really hadn't questioned the doctor (really his office manager) when she called to say a catherization was suggested to see the extent of a possible blockage.  After your replies, I asked questions of a friend who is a retired cardiologist and researched what would be done if indeed a blockage was found.  

In my original post I didn't mention that DH has diabetes and significant balance issues. He has fallen in the house twice in the last couple of weeks. He is not having any chest pain or shortness of breath.  So, if a blockage was found, a stent would be placed, and he would need medicines for a year to restrict platelet formation.  Since he's at great risk for falls, excessive bleeding after falls was a concern.  That's not to mention his Alz.

I had to insist that the doctor call me when I spoke with the office manager this morning.  He called this afternoon and after I reminded him of DHs Alz as well as his fall risk, he agreed that we should try to manage with medications for now.  I'm to alert him if there is any chest pain or shortness of breath.

So, thank you all!  DH was always the one of us to ask the most insightful questions. I'd ask questions, but often my questions did not get to the crux of the matter.  I need to be better about asking questions - and asking to speak with the doctor if an office manager calls.  And to post so that you all help me to understand how Alz affects the decisions that I make regarding his care.  We're just a year in on this Alz journey and quite frankly, DH's other medical issues right now are more problematic.  His major symptom is almost complete loss of short term memory - but that is glaringly more problematic when we need to make decisions such as this - they're my decisions now.

M1

Yay Aconite, that is EXACTLY the right outcome and I am so relieved for both of you.  You handled it perfectly.  Good for you---

Suzzin

Well done, aconite. It's hard to question "the experts" but so often the doctors are just treating the small problem that they see. It sounds like you've made a good decision to wait and see what's necessary. I'll be thinking of you as you go along this unfortunate path (heart)

Tony484

dayn2nite2 wrote:

Bluntly, death from a heart attack is kinder than death from dementia.

Bluntly, this is one person's opinion and should be taken as such.  In my experience, I have recently been through two very peaceful deaths resulting from dementia.  My DW is next, and she has been quite happy during more than 6 years of Alzheimer's.  Maybe a heart attack is kinder to the caregiver, but perhaps not to the individual with Alzheimer's.

Tony484

In previous comment, I should have said "perhaps NOT ALWAYS" to the person with Alzheimer's. I know that death by Alzheimer's can be awful, but not always.

Gig Harbor

I think you made the best decision. Since it sounds like your husband is fairly sedentary and does not push himself to exercise a blockage may not change his life expectancy. My BIL lived for many years with advanced heart disease but he never walked above a snail’s pace and never exerted himself. Management by medication is a great choice. I am glad that his cardiologist felt that way and didn’t give you any pushback.

mrahope

FWIW, I, too, have a spouse with not just heart issues, but one who has survived two major cancers.  I used to push him to go to every appointment and have every procedure that was recommended to him.  I think I may have saved his life (well sort of) by getting him the attention he needed.  Now, the oncologist wants him to have a CT scan as part of a check up two years post colon cancer surgery.  He doesn't want to do it.  I haven't pushed the way I used to.  I guess I am trying to concentrate on the quality of his life now rather than what might be coming down the road.  He doesn't have any pain or symptoms now and expressed that he doesn't want treatment/surgery again.  I hope I am doing the right thing, and feel at peace with this decision for now.