Anyone else taking care of otherwise healthy dementia patient?

vtech1951

Taking care of 85 year old with late stages but body is amazingly healthy, amazes the nurses and doctors each time,,,strong heart, good breathing, strong appetite, and can feed herself most of the time. One should be delighted right? But she is in late stages requires 24 care, is beyond any kind of converstation, but gets a clean bill of health each time..anyone experience this?

ButterflyWings

Yes. But the inevitable brain glitches and decline are eventually catching up with us. Some swallowing, choking and aspiration issues have just begun here. Otherwise, his nurse says based on weekly vital signs etc., DH "could live forever". It is putting us on the agonizing path of riding the dementia train all the way to the bitter end, unless something sudden and catastrophic occurs. The long goodbye, indeed.

Good DNA and all those years of clean living and taking care of himself, leads to this it seems. Not the dementia of course, but the part you are mentioning: healthy body, deteriorating brain slowly shutting down each bodily function in time. I so hate to see him suffer like this, and in fact am suffering with him though not in the same way of course.

I am sorry for you and your LO too. It is just sad, too sad to fathom. So we wait.

M1

I'm going to play devil's advocate here and tell you that a late stage dementia patient is not "otherwise healthy." We tend to say that but there are plenty of other situations in which people have a fatal disease of a single organ system-lung, kidney, heart, blood-and we don't use this terminology. Dementia patients are terminally ill with a brain disease. It eventually kills them and affects all their other organ systems. Maybe it doesn't matter, but I think it's more than a semantic distinction. Eighty five is superannuated by any measure.

DCCEPEK

Yes perfectly normal just this damn disease. We're 65 and doing our best she's 83 starting to have mobility issues but a strong will woman. Probably out live us. I hate Alzheimers and hate it we're all going through this. Nothing happy about our new year

gampiano

My DH was in good shape, physically active, and our checkups were always "great", until he reached stage 7, and the brain deterioration affected walking, swallowing, balance, and so many other things. The week before he died, the hospice nurse was pretty sure death wasn't imminent. Things can change by the hour at this stage.

JeriLynn66

My soon to be 98 year old FIL is also “otherwise healthy.”. Late Stage 5 with a toe in 6.

I’m 67 and have already had his POA updated to appoint my eldest daughter to oversee his care should I die first. He says he’s going to live to 100.

Kibbee

If you look at DH’s recent labs, on paper he seems pretty healthy. Total cholesterol in the 140 range, (my best on a statin is low 200s). PSA really good so no prostate troubles on the horizon. Last colonoscopy, no issues. A1c also good, no sign of diabetes. BP normal, heart, lungs and other organ functions are good. But cognitively things are not good. No longer interested in much of anything, like reading or socializing . And neurologically he’s off the rails. No longer walking or even weight bearing. Dependent on a Hoyer lift for transfers, spends more and more time in bed, sleeping or lethargic. Until recently he had good upper body strength but in the last week his hand control has declined to the point that I’m having to help him eat and drink. His diagnosis is Major Neurocognitive Disorder, and since I have yet to find a staging chart specific to that, it’s hard to say where he is at in the progression. If I look at his condition in terms of a dementia staging chart, he definitely has deficits found in stage 5 / 6.

I can’t help but wonder how long this will go on. He’s beginning to have difficulty with swallowing, and sometimes coughs or chokes a bit when eating, which has me concerned about aspiration pneumonia. His mother had Parkinson Disease and aspiration pneumonia is what ultimately ended her life.

GothicGremlin

My sister is in the same boat - late stage, but physically very healthy. If you look at Peggy's lab results, she looks great - plus, she's only 64. She's normal in every way - except her brain. Her brain is far from healthy.

We had a friend over for dinner the other night, she's a nurse, and has a Ph.D in nursing. Smart lady. She said essentially the same thing as @M1 when I made the "otherwise healthy" comment to her. She was gentle about it, but I think the time has come for me to stop thinking of Peggy as "otherwise healthy."

Quilting brings calm

@Kibbee major neurocognitive disorder is just the newest technical way of saying dementia. Then they can further specify which one- FTD, Alz, Lewy Body, etc.

To the post: My mom didn’t have too many additional serious conditions besides her dementia a few years ago. Mobility ( she uses a walker). However the last year or so, she’s been diagnosed with mild non specified pulmonary fibrosis possibly caused by an unknown mild autoimmune disorder. It’s unknown because they don’t feel a need to treat it at her age (85). Wet macular degeneration appeared earlier this year. So I definitely see her ‘otherwise good health’ status beginning to change.

gampiano

Kibbee,

regarding staging, a few questions. In addition to what you described, is DH incontinent? Can he articulate? I think he is further along in the staging than you indicate, based on the experiences with my husband. It took an evaluation by hospice to clarify things for me and they were a very helpful resource.

Kibbee

QBC - You raise a good point. When DH has his neuropsychology testing done the neuropsychologist made a point of saying it was not dementia. The neurosurgeon we consulted at the same time (ruling out NPH) said DH’s condition was the long term downstream consequence of whole brain radiation he had received as part of his brain cancer treatment many years earlier. But those observations were made 4 years ago and DH’s condition has certainly changed since then. While he doesn’t exhibit certain dementia traits (he has no problems with short term memory, wandering, anxiety, sundowning, and has no behavioral problems) he’s on the mark for everything relating to physical failure, loss of ADLs, incontinence, etc. I guess at the end of the day it doesn’t matter what it’s called. A rose by any other name is still a rose. Or in the case of dementia, a skunk cabbage by any other name is still a skunk cabbage. And it stinks!

Kibbee

Gampiano , I think you are right. In reality DH is probably in the 6 to 7 range. I have wondered about hospice - when it might be appropriate. But when I look at the criteria it seems like he’s not quite there yet.

My biggest fear for DH is that he will continue to fail cognitively and neurologically, until he’s simply persisting in a quasi-vegetative state for some horrible amount of time. I’d almost rather he did have a bad heart or some other condition that would bring about the end in a more rapid and merciful way.

wizmo

DW age 59 diagnosed EOAD at 53, currently early stage 6. I would say she is 95% physically fit and 90% cognitively impaired. She can still ride a bicycle though we mainly ride a tandem with me always driving. She is good at hiding her deficits but afternoon sundowning comes out often and it's obvious. Various health care providers have told me she will likely end up with some complication from a fall, aspiration pneumonia, or inability to recover from some other illness. I'm sure her physical health has kept her going longer than most 7 years in. I'm seeking placement in MCF in coming months and with good care she could have many years there, but realistically her brain is accelerating downward and it can't last.

housefinch

@Kibbee I agree with everyone above that I would really consider asking for a hospice evaluation. Anyone having choking symptoms when eating or drinking and who is sleeping most of the time and no longer ambulatory sounds very late stage in life to me. I would hate for you to be suddenly caught off guard by a quick decline here. Anyone with those choking symptoms can probably go downhill very fast anytime. I’m sorry to say that and want you to feel empowered to get the consultation, even if your loved one isn’t accepted yet.

Ragfoot

My wife's grandmother frequently said "when the time comes don't plug me in, I don't want to be a burden on anyone." She didn't count on AD. She continued to live for more than a year, laying in bed, not recognizing anyone, not speaking, not walking, being fed, bathed, turned, completely being taken care of. All without wires or tubes, just a lot of care and love. Death would be so much more desirable. Unfortunately, in our society, we have to live with the cards we are dealt.

harshedbuzz

@Kibbee

I agree with the others that a hospice eval would be a good idea. I would also bring in an SLP to investigate the swallowing issue. Today, if possible. If nothing else, the SLP can give you tips around how to feed and hydrate him as safely as possible. If he's a choking risk, he may need thickened fluids, to avoid mixed textures like cereal & milk or chunky soups, to only be fed sitting upright, mechanically processed food, etc. Dad's SLP banned sippy cups, sports bottles and straws as they can deliver liquid to the back of the throat along with pocketed food too quickly. That said, people can and do aspirate on saliva which is impossible to manage effectively IME.

The thing with "staging" whether you have a firm diagnosis of a specific dementia or not, is that a PWD is considered to be in the latest stage for which they have a symptom. I know it can be hard to wrap one's mind around this concept-- my dad was ambulatory, semi-continent, knew his close family, very verbal and self-feeding which led my mom to feel he maybe /might be stage 6-ish. The nurses and aides who provided his care the last 2 months when he was in the MCF agreed with her.

I was focused on the drastic weight loss and the occasional sputtering and felt he was probably further along. It was a conversation I had with the DON about weight loss. Dad had lost about 50lb in his last 6 months which is ominous. They did weight residents monthly, but the facility only had the weight from his pre-admission physical with his then-PCP and was unaware of the 35lbs he'd lost in the last 4 months before that. His GI track had become dysfunctional and food was kind of passing through him according to the gerontologist at the MCF. Part of this was that his epiglottis was sluggish and didn't react quickly enough to protect his airway. The DON ordered a next day appointment with an SLP and a hospice eval the next day. He did die in the time between his two appointments. An X-ray taken just after he saw the SLP came back the next day to confirm pneumonia. As sad as that was and as unprepared as my poor mom was, he had a peaceful end. He was chatty with me and flirty with the SLP not 6 hours before he was found unresponsive during a routine bed check.

HB

Kibbee

Good advice all around…thank you!

Lilydaisy

DW is 73 and maybe stage 4-5 overall. MCI diagnosis 2016, AD 2018. Increasing confusion, dreams or imaginings, hardly any short-term memory, manages ADLs except weather appropriate clothing. Little appetite or interest in physical activity e.g., walking. But likes to go along for any errand, walking dogs. I realize this does not suggest a healthy person, but she is in many respects. Or am I just reluctant to accept that it is getting bad?

AlzWife2023

@Lilydaisy

Sounds like my husband about five years ago. It’s a slow slog through the stages for many. I’d say he’s early 6 now.

AlzWife2023

My DH is about to turn 82 and I expect he’ll be where your LO is in three years (at 85). He has extra strong grip strength, bp & cholesterol managed, perfect numbers. He bounces back from colds etc. I think he’s early stage 6. My son says he’s made of steel. It’s scary to think I might be caregiving for another ten years tho b/c I quit working two years ago with no long term plan and I’m really feeling the pressure financially.

I think the OP says otherwise healthy to mean LO is unlikely to die of non-dementia related diseases.

harshedbuzz

@AlzWife2023 said:

My DH is about to turn 82 and I expect he’ll be where your LO is in three years (at 85). He has extra strong grip strength, bp & cholesterol managed, perfect numbers.

At a certain point, sometime in later stage 6, we stopped dad's metformin, BP and cholesterol. TBH, his BP was lower of late and weight loss had made the side effects of metformin worse than the risk of continuing it. His doctor described it as the risks and side effects no longer being justifiable given his quality of life.

A friend and her family made the decision not to replace the battery of their mom's pacemaker in stage 6.

HB

scarfire

my mom was diagnosed in 2014 with AD. she advanced quickly and was severely impaired cognitively by 2015. here we are ten years later and she is still alive with severe cognitive impairment but all other organs operating well for a 93 year old woman.

it has been a huge strain on me (her primary care giver) and my siblings. the constant delusions and dark places her mind travels to cause anxiety and frustration for everyone and there doesn't seem to be any help. she takes seroquel but it doesn't help much.

AlzWife2023

https://alzconnected.org/discussion/comment/231344#Comment_231344

I'm sorry to hear about your struggle. Is mom at home?

AlzWife2023

https://alzconnected.org/discussion/comment/231303#Comment_231303

DH is on low dose aspirin, statin & a calcium channel blocker for bp. I can't imagine stopping these as he doesn't seem to have any side effects.

harshedbuzz

https://alzconnected.org/discussion/comment/231360#Comment_231360

As prescribed, that combination is likely given to reduce the risk of a cardiovascular event— stroke or heart attack. Calcium channel blocker for BP. Statin for cholesterol. Low-dose aspirin to reduce risk of clotting and damage in the event of a heart attack.

At a certain point, and you don't sound there yet, continuing this protocol is potentially closing an exit ramp in favor of a drawn-out stage 7. This option isn't right for every family, especially if the PWD has angina.

HB

vtech1951

Well I thought I would update everyone one year later,,she is soon to turn 86,,going on bedridden for almost 3 years now, full of energy, needs meds to sleep, hungry all the time and has gained weight this year..some people can thrive with this disease,,did I mention the high cost of caregivers she needs every day, she is misserable 95% of her waking hours, requires constant feeding and changing, doesnt know the meaning of "quiet" and doesnt recognize anyone, sorry Im venting now,,ill update again in one year.

Jgirl57

vtech1951-re: your update ; my first thought was the frequent hunger , it seems that’s more than just a good appetite or thriving . Since she is gaining weight, that would seem to warrant a nutrition consult maybe.( certain foods, metabolism can cause intense hunger) Is she taking any medication for her mood/misery? You are correct, she will never understand what quiet means when it is told to her. That’s part of dementia . I hope you update before next year.

vtech1951

UPDATE! Since she has been on hospice for years now the doctor has now officially taken her off hospice since she has shown no signs of decline in the last couple of years,,remember she is bedridden, cannot bathe herself, cannot feed herself, just screams, eats and needs diaper changes frequently all day…for years now. This is not good news,,costs that were covered by hospice now falls on us, yes she could always go back in to hospice but only if her condition worsens. Has anyone else ever known someone to come off hospice before?? I will update again if and when there are any changes.

Rmillerphoto101

Hello there…..

I’m in a similar situation with both parents at the same time. I hired a private nursing company for a few months and would often ask the nurses with years of experience questions like that. One nurse I asked with 20 years experience, almost the same question and her response was:

“I would see some patients actually get better then decline again. It all depends on the patient. If they have a strong and healthy heart they can hang on for years”

I believe they will be here till our Father calls them home.

Help this helped.

Rmillerphoto101

Hello..

I just read your update. I actually had to fire a hospice company because of the quality of care. I learned recently that the longer a patient is on hospice the less money the company makes and that’s why they take them off. You might be able to have your insurance company come out and do an evaluation then you can get an order written for another hospice company. There are usually several in your area.