My stepmom probably has Alzheimers/Dementia

[TheRealJuliane]

While that is true, the symptoms have been going on for 6 years. It is unlikely that she has had an ongoing infection that has not effected her in other ways.

There is more likely something else going on, has she not had a medical check up in the last 6 years?

If she is good at hiding it, it shows that she at least has some insight into what is happening.

Yes, she’s been to the doctor many times, especially since she just went through breast cancer surgery last year. I guess there was nothing shocking in her blood tests but then they weren’t necessarily looking for a cause of hallucinations.

She definitely knows that what is happening to her isn’t normal, but then she really is convinced of what she sees, too, so … It’s both, really - not wanting to be viewed as “crazy,” but also stubborn that what she is seeing/hearing is reality.

I’m going to call the gerontologists tomorrow. Most of them are 100 miles away from her, but perhaps they have referral lists in her area. I’d like to have her evaluated from the ground up and just see if there’s anything we can do. Her dear friend and I both have the same goal in mind - keeping her out of a nursing home and giving her the best quality of life she can have in the years remaining to her.

 

[EasterJoy]

Yes, she’s been to the doctor many times, especially since she just went through breast cancer surgery last year. I guess there was nothing shocking in her blood tests but then they weren’t necessarily looking for a cause of hallucinations.

She definitely knows that what is happening to her isn’t normal, but then she really is convinced of what she sees, too, so … It’s both, really - not wanting to be viewed as “crazy,” but also stubborn that what she is seeing/hearing is reality.

I’m going to call the gerontologists tomorrow. Most of them are 100 miles away from her, but perhaps they have referral lists in her area. I’d like to have her evaluated from the ground up and just see if there’s anything we can do. Her dear friend and I both have the same goal in mind - keeping her out of a nursing home and giving her the best quality of life she can have in the years remaining to her.

I went to a class on caring for people with dementia, given by a geriatric nurse, and she cautioned against being over-protective or assuming that a nursing home is the safest place in the whole world for a dementia patient. Dementia patients live in closed wards planned to keep them as safe as possible, yes, but they’re surrounded by other people with dementia, people who behave in bizarre and unpredictable ways. The MIL of one of my relatives was in a nursing home and her family got an apology that they had found another resident trying to smother her with a pillow! IOW, the relative safety of a memory care unit should not be over-estimated.

Some patients do far better at home, making it the best choice even when they give cause for some real concerns. (I do not mean letting them drive around the neighborhood when they’re a menace!) So just like when we’re teens, when we’re losing some of our judgment on the other end we don’t have to be perfectly safe in order to be better off in our own home than anywhere else. Our aging parents, like our teenaged children, cannot be kept 100% safe, no matter what we do. We’re going to have to take some risks if we act in their best interest, and we shouldn’t punish ourselves if we can’t keep them from every possible harm. The Golden Rule, I think, is the best rule to apply.

 

[TheRealJuliane]

Her friend already took her car away - Mom hadn’t driven in a few years, since she got into a small fender-bender near her house. With her macular degeneration, she can’t see well enough to drive anyway. And her friend was afraid that the imaginary people might convince Mom to take them somewhere and she’d do it and cause an accident.

The thing about nursing homes is that a lot of the patients end up on sedation because that’s the only way to control them and keep them from harming themselves or others. And neither Mom’s friend nor I want to see her end up that way. She’s been so independent and always done for herself. And it’s weird to me that she can still mostly take care of herself even now, it’s just that these hallucinations get in the way and cause her problems.

I am going to take a lot of holy water when I go up there, and try to get her house blessed by the local priest, too. She’s a Southern Baptist, so I might have to arrange it when she’s at her friend’s house. But it can’t hurt, can it?

 

[JRKH]

Julieane,
I noted above that you mention she had surgery last year. If she was under general anesthesia this could be a contributor. Older people do not recover from this as readily and hallucinations can be involved. I’ve seen this in both my Father and in my MIL.
Although you say that this has been going on for six years, it could be that fallout from the surgery last year has made it worse.
Please note that I’m not saying anyone did anything wrong…just that geriatric patients and general anesthesia can be problematic.

I’m glad to hear that you and her friend are going to try to keep her out of a nursing home. While I do not wish to “diss” such facilities, certainly it is better if a loved one can be cared for by those who love them. And I might add that the blessings one receives from being a primary caregiver are profound, and sometimes surprising. God has taught me more in just a couple of years as a caregiver to my wife than I could ever have learned otherwise.

Peace
James

 

[TheRealJuliane]

Julieane,
I noted above that you mention she had surgery last year. If she was under general anesthesia this could be a contributor. Older people do not recover from this as readily and hallucinations can be involved. I’ve seen this in both my Father and in my MIL.
Although you say that this has been going on for six years, it could be that fallout from the surgery last year has made it worse.
Please note that I’m not saying anyone did anything wrong…just that geriatric patients and general anesthesia can be problematic.

I’m glad to hear that you and her friend are going to try to keep her out of a nursing home. While I do not wish to “diss” such facilities, certainly it is better if a loved one can be cared for by those who love them. And I might add that the blessings one receives from being a primary caregiver are profound, and sometimes surprising. God has taught me more in just a couple of years as a caregiver to my wife than I could ever have learned otherwise.

Peace
James

James, do those anesthesia-induced hallucinations tend to get stronger over time, or do they fade away? The reason I ask is that she also had an operation to remove a cancerous mass in her colon several years ago, and of course she had general anesthesia for that. She recovered from that operation and did not need chemo or radiation, but that probably was about the time that these visions started - not people at first. It’s hard for me to trace the exact time line since I only see her in person a few times a year, and since her friend was not telling me everything that was going on. Even up to this day, Mom won’t tell me directly what she is going through. I’ll sit down with her friend and try to sort out what the time line was, probably just for my own interest at this point. It may be too late to try and fix whatever is going on, since it seems to be progressing steadily now.

Her friend emailed me and said that Mom told her that the i(maginary) girl had died - I wonder what happens now??? The mind is such an interesting thing, isn’t it?

 

[JRKH]

James, do those anesthesia-induced hallucinations tend to get stronger over time, or do they fade away? The reason I ask is that she also had an operation to remove a cancerous mass in her colon several years ago, and of course she had general anesthesia for that. She recovered from that operation and did not need chemo or radiation, but that probably was about the time that these visions started - not people at first. It’s hard for me to trace the exact time line since I only see her in person a few times a year, and since her friend was not telling me everything that was going on. Even up to this day, Mom won’t tell me directly what she is going through. I’ll sit down with her friend and try to sort out what the time line was, probably just for my own interest at this point. It may be too late to try and fix whatever is going on, since it seems to be progressing steadily now.

Her friend emailed me and said that Mom told her that the i(maginary) girl had died - I wonder what happens now??? The mind is such an interesting thing, isn’t it?

Juliane,
I’m afraid I don’t have anything to offer on whether such things get better.
My dad, who was in early stage ALZ at the time he had is surgery, never did fully recover, but the acute problems seemed to subside for a time. He was in his mid-late seventies at that time.
My MIL was 95 when she had breast surgery - followed swiftly by a fall and hip surgery…In fact this is ongoing and she is in a convalescent home. Her main problem seems to be fear and paranoia. The staff wants to kill her…that type of thing.

That said, given that anesthesia can have such effects, coupled with your Stem-mom’s living on her own, in a rather quiet house, simple noises, creeks, pops etc made by ANY house can trigger old memories and thoughts that could easily become hallucinations.

Of course I am just speculating some here…I’m no expert…but I figured that since you are trying to get a comprehensive picture, I thought it relevant to mention the anesthesia issue.

Peace
James

 

[EasterJoy]

James, do those anesthesia-induced hallucinations tend to get stronger over time, or do they fade away? The reason I ask is that she also had an operation to remove a cancerous mass in her colon several years ago, and of course she had general anesthesia for that. She recovered from that operation and did not need chemo or radiation, but that probably was about the time that these visions started - not people at first. It’s hard for me to trace the exact time line since I only see her in person a few times a year, and since her friend was not telling me everything that was going on. Even up to this day, Mom won’t tell me directly what she is going through. I’ll sit down with her friend and try to sort out what the time line was, probably just for my own interest at this point. It may be too late to try and fix whatever is going on, since it seems to be progressing steadily now.

Her friend emailed me and said that Mom told her that the i(maginary) girl had died - I wonder what happens now??? The mind is such an interesting thing, isn’t it?

A relative of ours broke her hip, had surgery, and she started thinking all sorts of odd things after that…her brothers (who had been dead for over 30 years) were living in the attic of the nursing home, she owned the nursing home, there was a little girl she was having conversations with, and so on. Except that stuff, she seemed pretty sharp, but yes, I have seen instances where an older person who had a trauma or a surgery starts having this kind of thoughts, yes.

I never thought of those as hallucinations, though, because she never said, “See! She’s standing right there next to you!” It was all stuff she “remembered”, not anything I witnessed her experiencing in the present. I have seen other older people go through similar precipitous declines or changes in personality after being “out” for some reason. It is not uncommon for them to report vivid “memories” of things that never happened. Maybe our brains at that age are more vulnerable to short-term oxygen deprivation; who knows.

I have also seen people with dementia believe themselves to be in a situation they’re not in. The best I can describe it is that they seem to be living what we would consider a really weird dream. “I was trying to start the woodstove with stuff from the bathroom at starter–talcum powder, shampoo, Comet–and I knew what the stuff was, but in my dream, that’s what was used to start a fire.” Well, when you’re in a weird dream, you sometimes sense that what you’re doing is weird, but you just go with it. You also have the weirdest and most frustrating arguments with people, things that you wake up and think “what on earth was I thinking? But it made sense at the time…” I think it must be like that.

 

[TheRealJuliane]

Frustration on my part has already begun.

Mom lives in a rural area, where real doctors are in short supply. There is only 1 geriatric “specialist” in several counties, and he’s a D.O., not an M.D. If she’s going to be seen by an MD, her friend is likely going to have to take her over to Springfield which is 100 miles away. Very tiring for someone her age. And that appointment will take 2 hours as well, with no guarantee that she won’t have to come back for further evaluation.

If she could come down here, I could get her seen right away.

 

[JRKH]

Frustration on my part has already begun.

Mom lives in a rural area, where real doctors are in short supply. There is only 1 geriatric “specialist” in several counties, and he’s a D.O., not an M.D. If she’s going to be seen by an MD, her friend is likely going to have to take her over to Springfield which is 100 miles away. Very tiring for someone her age. And that appointment will take 2 hours as well, with no guarantee that she won’t have to come back for further evaluation.

If she could come down here, I could get her seen right away.

My PCP has always been a D.O. and I’ve never had any complaint with him…

Hang in there kiddo…It’s likely going to be a long, stressful journey.

Peace
James

 

[EasterJoy]

Frustration on my part has already begun.

Mom lives in a rural area, where real doctors are in short supply. There is only 1 geriatric “specialist” in several counties, and he’s a D.O., not an M.D. If she’s going to be seen by an MD, her friend is likely going to have to take her over to Springfield which is 100 miles away. Very tiring for someone her age. And that appointment will take 2 hours as well, with no guarantee that she won’t have to come back for further evaluation.

If she could come down here, I could get her seen right away.

There was a time when too many of the DOs were the guys who couldn’t get into MD school, but that is less and less the case these days, and even in the old days some of the DOs were as good as any MD. If the geriatric specialist has a board certification from a board that certifies both MDs and DOs, I would take that as a very good sign. The American Board of Internal Medicine and the American Board of Family Medicine have a joint certification program in Geriatric Medicine that certifies both MDs and DOs with sufficient residency and training. See if the doc has that certification.

 

[TheRealJuliane]

There was a time when too many of the DOs were the guys who couldn’t get into MD school, but that is less and less the case these days, and even in the old days some of the DOs were as good as any MD. If the geriatric specialist has a board certification from a board that certifies both MDs and DOs, I would take that as a very good sign. The American Board of Internal Medicine and the American Board of Family Medicine have a joint certification program in Geriatric Medicine that certifies both MDs and DOs with sufficient residency and training. See if the doc has that certification.

Nope, no such luck.

American Osteopathic Board of
Family Practice, American Osteopathic Board
of General Practice - Geriatrics



I’ll keep looking.

 

[crystal_waters]

I have seen various people with age related dementia and Alzheimer’s disease but I don’t think that seeing imaginary people is an ordinary part of dementia. Can you get her to see a geriatric psychiatrist? Does anyone have a health care power of attorney, a financial power of attorney?

She should probably be looking into assisted living facilities, like an apartment but with staff nearby.

Yes it is, seeing hallucinations is a common symptom of Lewy Body Dementia

 

[TheRealJuliane]

Yes it is, seeing hallucinations is a common symptom of Lewy Body Dementia

Yes, but that form of dementia also resembles Parkinson’s - there is a symptom of body rigidity and problems in movement that she does not have.

She doesn’t fit into any of the categories and when I talked to the Alzheimer’s Association near where she lives, the staff member agreed that it’s very unusual for people to have hallucinations unless they are pretty far along in the progression. IOW, a person who is seeing things would not know who they are, where they are, or who any of us are, and Mom is still in reality, unless she is seeing/hearing these visions.

Have to make more phone calls this morning.

 

[EasterJoy]

Nope, no such luck.

American Osteopathic Board of
Family Practice, American Osteopathic Board
of General Practice - Geriatrics



I’ll keep looking.

I don’t know whether that is a well-respected certification or not.

If you know a physician in the area, ask if they will do you a big favor and informally poll some geriatric docs in the state whom they respect about this DO. In small medical communities, such as geriatrics, reputations can get around when somebody either does good work or else leaves “messes” for other docs to try to clean up after the fact. The docs will often tell the other docs things off the record, for the purpose of helping friends and family select a doc, that they won’t feel free to tell members of the general public. This DO may have a very good reputation among those in his field, and if that is true he is certainly your most convenient choice! It’s worth doing some work to see if he’d work for your stepmom’s needs. It could not hurt the DO, since you won’t use him if you can’t get a good recommendation and since you do have need of this information, so this would not fall in the category of soliciting gossip.

 

[TheRealJuliane]

I don’t know whether that is a well-respected certification or not.

If you know a physician in the area, ask if they will do you a big favor and informally poll some geriatric docs in the state whom they respect about this DO. In small medical communities, such as geriatrics, reputations can get around when somebody either does good work or else leaves “messes” for other docs to try to clean up after the fact. The docs will often tell the other docs things off the record, for the purpose of helping friends and family select a doc, that they won’t feel free to tell members of the general public. This DO may have a very good reputation among those in his field, and if that is true he is certainly your most convenient choice! It’s worth doing some work to see if he’d work for your stepmom’s needs. It could not hurt the DO, since you won’t use him if you can’t get a good recommendation and since you do have need of this information, so this would not fall in the category of soliciting gossip.

Thank you EasterJoy. There are a lot of osteopaths all over that area, and in any rural area. MDs are in short supply in more rural areas. In fact, the doctor who treated my dad during his illness was a DO. I know that osteopaths do go through training. It is my preference based on my own experiences, and especially in this situation, I would just prefer that the doctor who treats my stepmom be an MD. But, in this case, I may have to start with what I can and then if I need to continue, she may yet have to travel. At least if she can see this doctor first, he might have some ideas about what to do next.

 

[EasterJoy]

Thank you EasterJoy. There are a lot of osteopaths all over that area, and in any rural area. MDs are in short supply in more rural areas. In fact, the doctor who treated my dad during his illness was a DO. I know that osteopaths do go through training. It is my preference based on my own experiences, and especially in this situation, I would just prefer that the doctor who treats my stepmom be an MD. But, in this case, I may have to start with what I can and then if I need to continue, she may yet have to travel. At least if she can see this doctor first, he might have some ideas about what to do next.

It isn’t a good situation when the patient is nowhere near the doctor of choice, that is for sure. I have thought about that with regards to retirement, because of course the cost of living is sometimes very much less when you live out in the boondocks, and it can be so very lovely. Clean air, lots of room to garden, often a lot less crime. It’s a long way from where the specialists live, too, though.

Good luck!

 

[TheRealJuliane]

It isn’t a good situation when the patient is nowhere near the doctor of choice, that is for sure. I have thought about that with regards to retirement, because of course the cost of living is sometimes very much less when you live out in the boondocks, and it can be so very lovely. Clean air, lots of room to garden, often a lot less crime. It’s a long way from where the specialists live, too, though.

Good luck!

Exactly. The ideal would be a large self-contained community which could support its own doctors with a hospital within med-evac range. But where is that available?? And once you get up into your 90’s…Well, long car trips are not only difficult, but can be dangerous.

There is a small hospital in Mom’s town (very small), and one a little larger in the nearest larger town about 40 minutes away. 40 minutes is manageable for her - 90 minutes is really pushing it.

 

[EasterJoy]

Exactly. The ideal would be a large self-contained community which could support its own doctors with a hospital within med-evac range. But where is that available?? And once you get up into your 90’s…Well, long car trips are not only difficult, but can be dangerous.

There is a small hospital in Mom’s town (very small), and one a little larger in the nearest larger town about 40 minutes away. 40 minutes is manageable for her - 90 minutes is really pushing it.

It’s traumatic to move away from a long-time home when you’re that age, too, especially if you’ve always been a homebody. I think you’re doing the best thing for her, which is to try to keep her in place for as long as possible.

 

[TheRealJuliane]

I just had a flash of possible insight.

Her friend says she cycles and is sometimes quite manic for up to 36 hours at a time. I wonder if this could be some form of schizophrenia? The mania would fit, as would the hallucinations. Will mention this to the doctor and see what he thinks.

 

[EasterJoy]

I just had a flash of possible insight.

Her friend says she cycles and is sometimes quite manic for up to 36 hours at a time. I wonder if this could be some form of schizophrenia? The mania would fit, as would the hallucinations. Will mention this to the doctor and see what he thinks.

If this is true mania, and not just wild swings in her energy level, she might also have a brain disease:
“Mania in the elderly occurs in three forms: (1) Bipolar patients who get older (2) elderly patients with pre-existing depression who develop manic symptoms and (3) elderly patients who first present with mania. Late life onset mania is relatively uncommon and may signal underlying neurological diseases, e.g., stroke, brain tumor etc…”

From the handout “Comprehensive Management of the Elderly Patient with Mania”
alzbrain.org/pdf/handouts/9001.%20COMPREHENSIVE%20MANAGEMENT%20OF%20MANIA%20IN%20THE%20ELDERLY.pdf

Yeah, it looks more and more as if she needs to get a real work-up for this. I think you’re doing her a huge favor by keeping her at home for as long as possible, though, even though there are alternatives that would be easier on you. Bless your heart for looking out for her, and God bless you as you go through figuring this out and addressing her issues. I hope it is something that will ultimately result in a “treat and release”!