Illness, anxiety, counselling, oh my.
February 16, 2019 3:10 PM Subscribe
This was us before Xmas. Things appeared to be settling down nicely until this last week, when Mr MMDP had something of a setback and I had something of a meltdown. I am a mess and can't help him until I help myself. But I don't know what sort of help I need. What does AskMefi suggest?
The back story is in the previous question, but my much-loved husband had a period of not making memories that resulted in a trip to hospital and a barrage of tests. They concluded that it was caused by a water infection. The situation resolved nicely and everything was fine until this last week, when following a casual conversation over dinner we realised he'd again had a complete failure to recall a fairly detailed conversation we'd had the night before and not only that, he'd forgotten the news story the conversation had been based on. While I was trying to get my mind round that, he also revealed he'd also discovered a "dent" in his skull about ten days previously that he'd not noticed before. Cue panic and freaking out (on his part too and he very rarely gets worried or scared).
So, more trips to doctors and hospital, more blood tests, another CT scan. Amazingly, no skull or bone anomalies showed up on this scan - there was no hole or dent or bone loss, even though everyone could feel this groove. Nothing underlying in the brain either. The doctor checked twice with the radiologist. Nothing. OK, good news. An A&E consultant also spoke to us - she concluded that it was transient global amnesia - but she wasn't very reassuring, as she talked about neurologists and the likelihood of Alzheimer's (she mentioned it as something unlikely but suggested I keep a log of times Mr MMDP has these episodes and if they increase in frequency then take it up with the GP. That made me both sad and anxious).
Now to the current situation. We are waiting for the results of blood tests on things like B12, Vitamin D, folate, lipids and other potential memory affecting biological chemicals. There is talk of a memory clinic, which terrifies me as he's only 54 and the thought of him with early-onset dementia is too much to stand. And this is the issue - I should be able to pull myself together and support him in the way he always does for me, but I'm a complete mess. I'm crying and nauseous and anxious and feel like I need to talk to someone about how to deal with what's going on. However I have no idea who I should be talking to - a counsellor (what sort?), a support group (for what?), friends (not many suitable candidates). I don't know what to do to help both him and me get through whatever is coming our way. I need to get things in proportion and I can't.
For what it's worth, I have tried CBT and it did nothing for me at all. Can anyone suggest a possible course of action in terms of where I might go for support and advice? Also, and I'm really sorry if this is triggering for anyone, have you had any experience with early onset dementia in a loved one and if so, what were the signs?
The back story is in the previous question, but my much-loved husband had a period of not making memories that resulted in a trip to hospital and a barrage of tests. They concluded that it was caused by a water infection. The situation resolved nicely and everything was fine until this last week, when following a casual conversation over dinner we realised he'd again had a complete failure to recall a fairly detailed conversation we'd had the night before and not only that, he'd forgotten the news story the conversation had been based on. While I was trying to get my mind round that, he also revealed he'd also discovered a "dent" in his skull about ten days previously that he'd not noticed before. Cue panic and freaking out (on his part too and he very rarely gets worried or scared).
So, more trips to doctors and hospital, more blood tests, another CT scan. Amazingly, no skull or bone anomalies showed up on this scan - there was no hole or dent or bone loss, even though everyone could feel this groove. Nothing underlying in the brain either. The doctor checked twice with the radiologist. Nothing. OK, good news. An A&E consultant also spoke to us - she concluded that it was transient global amnesia - but she wasn't very reassuring, as she talked about neurologists and the likelihood of Alzheimer's (she mentioned it as something unlikely but suggested I keep a log of times Mr MMDP has these episodes and if they increase in frequency then take it up with the GP. That made me both sad and anxious).
Now to the current situation. We are waiting for the results of blood tests on things like B12, Vitamin D, folate, lipids and other potential memory affecting biological chemicals. There is talk of a memory clinic, which terrifies me as he's only 54 and the thought of him with early-onset dementia is too much to stand. And this is the issue - I should be able to pull myself together and support him in the way he always does for me, but I'm a complete mess. I'm crying and nauseous and anxious and feel like I need to talk to someone about how to deal with what's going on. However I have no idea who I should be talking to - a counsellor (what sort?), a support group (for what?), friends (not many suitable candidates). I don't know what to do to help both him and me get through whatever is coming our way. I need to get things in proportion and I can't.
For what it's worth, I have tried CBT and it did nothing for me at all. Can anyone suggest a possible course of action in terms of where I might go for support and advice? Also, and I'm really sorry if this is triggering for anyone, have you had any experience with early onset dementia in a loved one and if so, what were the signs?
Any old regular non-CBT talk therapist would be a good thing; even if you don't like the person, just getting your story off your chest in the consultation to another human being is helpful. If you find a good one they can help you find the right support group and so on. I know how you feel having a husband who's not well and the consequences of him not being well (Like never knowing what parts of him acting weird mean he's getting sick again!) weigh on you really hard. It REALLY helps to have someone to talk to. I think human beings are tough and we can get through a lot but there is very little we can do without someone to talk to about it. It's a requirement of being able to function.
posted by bleep at 3:40 PM on February 16, 2019 [3 favorites]
posted by bleep at 3:40 PM on February 16, 2019 [3 favorites]
Best answer: Someone in my family had an early-onset dementing disorder and I've read a reasonable amount of serious papers (for a layperson) on the subject. Obviously I'm not a doctor, but this kind of episode is very much not characteristic of early-onset dementias. It was not characteristic of my family member and I have never read a paper which described episodes of transient global amnesia as an onset symptom - or indeed a symptom at all. I'm not a neurologist so I can't say "this could never happen", but it doesn't match up to anything I know about.
Both from experience and from reading, I would expect onset symptoms to be insidious and unremitting, although perhaps with slight variation day-to-day. I would expect language changes, behavior changes, changes in empathy or maybe changes in vision, being disoriented as to place but in an "I don't recognize my street" way, not in an "I forgot everything" way.
The signs with my relative were language changes and executive function changes that started very trivially and were easy to confuse with depression but became worse and did not remit. After diagnosis, I remember one particular incident where we were in a relatively easy to navigate city familiar to both of us and my relative couldn't orientate themselves. They knew where they were generally, where they were going and what had happened, but could not figure out the specifics.
As far as I know, the deep confusion and memory loss that we associate with dementias tends to be quite late stage and when it comes it stays. People have good days and good hours and flashes of memory, but they do not have episodes of total amnesia in the midst of otherwise normal function.
Early onset dementias are rare disorders. Even the doctors who specialize in one or two of them may not really know too much about all of them, as I've discovered. They do not map perfectly to normal-onset Alzheimer's, either, so sometimes people know about one and not the other. It is far, far more likely that your emergency doctor really was speaking without any real knowledge of dementing disorders except acute episodes in late-stage patients which she'd encounter in her work. She has probably seen late-stage patients with infections who have confusion like your husband, but because dementias are not themselves emergency conditions, she doesn't have the diagnostic experience.
They are horrible and cruel diseases, some of the worst, but when someone says "my otherwise healthy fifty-ish partner had two acute episodes of total amnesia" my mind does not leap to a disease which is insidious and gradual in onset.
I am a very anxious person, especially about health stuff. The only thing I've found to help me at all is the discovery that medical information is biased toward Big Scaries where as medical reality is that there are lots of Little Awfuls that cause many of the same symptoms. I had a bunch of symptoms, for instance, of a serious neurological problem which I truly believed that I had. I had a lot of testing, and it turned out to be a nuisancey but not terrible problem which was not discussed nearly as much as the serious problem because it wasn't scary or unmanageable. Since then, I remind myself that very, very often even extremely scary symptoms have manageable causes.
posted by Frowner at 3:41 PM on February 16, 2019 [17 favorites]
Both from experience and from reading, I would expect onset symptoms to be insidious and unremitting, although perhaps with slight variation day-to-day. I would expect language changes, behavior changes, changes in empathy or maybe changes in vision, being disoriented as to place but in an "I don't recognize my street" way, not in an "I forgot everything" way.
The signs with my relative were language changes and executive function changes that started very trivially and were easy to confuse with depression but became worse and did not remit. After diagnosis, I remember one particular incident where we were in a relatively easy to navigate city familiar to both of us and my relative couldn't orientate themselves. They knew where they were generally, where they were going and what had happened, but could not figure out the specifics.
As far as I know, the deep confusion and memory loss that we associate with dementias tends to be quite late stage and when it comes it stays. People have good days and good hours and flashes of memory, but they do not have episodes of total amnesia in the midst of otherwise normal function.
Early onset dementias are rare disorders. Even the doctors who specialize in one or two of them may not really know too much about all of them, as I've discovered. They do not map perfectly to normal-onset Alzheimer's, either, so sometimes people know about one and not the other. It is far, far more likely that your emergency doctor really was speaking without any real knowledge of dementing disorders except acute episodes in late-stage patients which she'd encounter in her work. She has probably seen late-stage patients with infections who have confusion like your husband, but because dementias are not themselves emergency conditions, she doesn't have the diagnostic experience.
They are horrible and cruel diseases, some of the worst, but when someone says "my otherwise healthy fifty-ish partner had two acute episodes of total amnesia" my mind does not leap to a disease which is insidious and gradual in onset.
I am a very anxious person, especially about health stuff. The only thing I've found to help me at all is the discovery that medical information is biased toward Big Scaries where as medical reality is that there are lots of Little Awfuls that cause many of the same symptoms. I had a bunch of symptoms, for instance, of a serious neurological problem which I truly believed that I had. I had a lot of testing, and it turned out to be a nuisancey but not terrible problem which was not discussed nearly as much as the serious problem because it wasn't scary or unmanageable. Since then, I remind myself that very, very often even extremely scary symptoms have manageable causes.
posted by Frowner at 3:41 PM on February 16, 2019 [17 favorites]
Though not dementia, I have had experience with a sudden and very serious illness in a loved one, and needing to keep my shit together to get them through it. The most helpful things for me were a therapist, anti-anxiety medication, and a support group for family members of people with severe illnesses. (No one in an even halfway decent support group is going to gatekeep this; it doesn't have to be diagnosed, you don't have to guess what "severe" is - if you feel like such a group would be useful for you, you can go, once or twice or every week for ten years.) Although we did a little bit of CBT stuff, honestly what I most needed from therapy was just an hour every other week where I could go and talk to someone sympathetic about all the kind of awful painful feelings I had locked up inside and didn't have another outlet for; the specific modality mattered much less than some basic rapport and empathy and ability to tell me "yes, this is a normal thing you're feeling in your situation."
If you want to try any of these things, I would start with a therapist, and also start looking for a psychiatrist at the same time to talk to about meds because in some places, psychiatrists have significant wait times for new patients. You may as well get on someone's appointment list now in case it takes three months. If the appointment time comes and you don't need it because everything's turned out completely fine at home and/or your therapist has helped you find some other ways to cope and meds seem unnecessary, you can cancel, but get things in motion so future you has that option. A therapist and psychiatrist may also be able to point you to support groups in your area; sometimes they're sort of off the grid and hard to find.
It's okay for you to be feeling all the things you are feeling, and to seek out safe places to let those feelings out. Doing that isn't selfish or a waste of anyone's time; taking care of yourself is part of how you're going to be able to take care of your spouse.
For me, it was also very useful to take up a new hobby/skill that was different enough from what I usually did that it really occupied my brain and kept me from sinking too far into anxiety/panic spirals. I learned to knit, and spent some time coloring, because having something that coordinated both my brain and my body really helped keep my calm. YMMV, but as frivolous as "take up a new craft!" may sound right now, maybe something new to keep your brain occupied would be helpful.
Good luck to you and your husband - I hope everything resolves soon and well for you both.
posted by Stacey at 3:44 PM on February 16, 2019 [4 favorites]
If you want to try any of these things, I would start with a therapist, and also start looking for a psychiatrist at the same time to talk to about meds because in some places, psychiatrists have significant wait times for new patients. You may as well get on someone's appointment list now in case it takes three months. If the appointment time comes and you don't need it because everything's turned out completely fine at home and/or your therapist has helped you find some other ways to cope and meds seem unnecessary, you can cancel, but get things in motion so future you has that option. A therapist and psychiatrist may also be able to point you to support groups in your area; sometimes they're sort of off the grid and hard to find.
It's okay for you to be feeling all the things you are feeling, and to seek out safe places to let those feelings out. Doing that isn't selfish or a waste of anyone's time; taking care of yourself is part of how you're going to be able to take care of your spouse.
For me, it was also very useful to take up a new hobby/skill that was different enough from what I usually did that it really occupied my brain and kept me from sinking too far into anxiety/panic spirals. I learned to knit, and spent some time coloring, because having something that coordinated both my brain and my body really helped keep my calm. YMMV, but as frivolous as "take up a new craft!" may sound right now, maybe something new to keep your brain occupied would be helpful.
Good luck to you and your husband - I hope everything resolves soon and well for you both.
posted by Stacey at 3:44 PM on February 16, 2019 [4 favorites]
My husband had some fairly similar issues and he had both B12 and Vitamin D deficiency at the same time. He was a mess, and this happened twice (both times in February, the worst time of year for Vit D lack, and as you get older B12 is an issue as well). He had to get prescription D for 20,000 units a week plus 5,000 per day for 8 weeks, and B12 also. He was definitely not himself (and the 2nd time they thought he was depressed and wanted to put him on Prozac and I was like hell you will, test his blood, and I was right).
Does your hospital system have a social worker? Or your state have a peer support group? We have both in Maine, we can call a number and talk to someone and they will both listen and give referrals to support.
It's normal to be distressed in these situations, it's a shock, and to figure out what to do is difficult, I have generalized anxiety disorder and I sometimes have a meltdown before I can figure out the right course of action, it can be paralyzing. Try not to think the worst before you have all the answers. My husband also has a dent in his skull, but he's always been absent minded as well, so he might be looking for answers and think that's the cause, when it could have been there all along (many people have dents, including me).
It's all right to feel overwhelmed. I have to do something else, like splash water on my face and rage away from him and the world for 15 minutes, and then maybe have a good cry, and then splash more water and pull myself together, before I can begin to function again.
In his case, it really WAS low D and B12. I had to push for it and be his advocate. Whatever it is, you might have to be his, and ask the doctor, nurses (nurses know a lot), and your area hospital for support referrals. You're not alone, feel free to MeMail me if you want to talk. {{{{Hugs}}}}
posted by Marie Mon Dieu at 3:50 PM on February 16, 2019 [5 favorites]
Does your hospital system have a social worker? Or your state have a peer support group? We have both in Maine, we can call a number and talk to someone and they will both listen and give referrals to support.
It's normal to be distressed in these situations, it's a shock, and to figure out what to do is difficult, I have generalized anxiety disorder and I sometimes have a meltdown before I can figure out the right course of action, it can be paralyzing. Try not to think the worst before you have all the answers. My husband also has a dent in his skull, but he's always been absent minded as well, so he might be looking for answers and think that's the cause, when it could have been there all along (many people have dents, including me).
It's all right to feel overwhelmed. I have to do something else, like splash water on my face and rage away from him and the world for 15 minutes, and then maybe have a good cry, and then splash more water and pull myself together, before I can begin to function again.
In his case, it really WAS low D and B12. I had to push for it and be his advocate. Whatever it is, you might have to be his, and ask the doctor, nurses (nurses know a lot), and your area hospital for support referrals. You're not alone, feel free to MeMail me if you want to talk. {{{{Hugs}}}}
posted by Marie Mon Dieu at 3:50 PM on February 16, 2019 [5 favorites]
Don't be too hard on yourself for being a mess. This is lots to deal with. If you're both getting, ahem, mature you may be having hormonal changes that are throwing you for a loop above and beyond this stress. Lots of interweb good vibes...
posted by PistachioRoux at 6:55 PM on February 16, 2019 [1 favorite]
posted by PistachioRoux at 6:55 PM on February 16, 2019 [1 favorite]
Go to your physician. Print this out, or write a bulletpoint version, to discuss with them.
Accept medical intervention.
Because trauma - which you have already been through once and are now both experiencing post-trauma reactions along with experiencing new trauma right now as these minutes go by - does things to your neurofunctioning, and intervention during the trauma can prevent some (some! there's no cure-all yet!) post-trauma consequences.
But also the stress and the trauma are taking a toll on your body, cumulatively, right now. Every hour of accumulated sleep deprivation from stress, reduced nutrient absorption in the gut, sustained high cortisol levels, all this stuff can put YOU in the hospital, which is both undesirable on a general level and specifically would be extra stressful right now. It is okay to mitigate that just so you can function and manage this situation.
You could try a therapist that specializes in trauma (this will involve some CBT probably, but as part of a mix) too, but please please talk to your doctor, or a doctor if you don't have one already. Talk about rescue meds (probably benzos), talk about whether there is an ongoing medication routine they feel is a useful form of support right now, talk about sleep. It could also take months, if you're in the US, to actually get started with a therapist you have a good groove with, so it doesn't really help you today. Support groups might help too, but it can be hard to feel comfortable at one when you don't entirely know what's going on yet.
posted by Lyn Never at 9:13 PM on February 16, 2019 [4 favorites]
Accept medical intervention.
Because trauma - which you have already been through once and are now both experiencing post-trauma reactions along with experiencing new trauma right now as these minutes go by - does things to your neurofunctioning, and intervention during the trauma can prevent some (some! there's no cure-all yet!) post-trauma consequences.
But also the stress and the trauma are taking a toll on your body, cumulatively, right now. Every hour of accumulated sleep deprivation from stress, reduced nutrient absorption in the gut, sustained high cortisol levels, all this stuff can put YOU in the hospital, which is both undesirable on a general level and specifically would be extra stressful right now. It is okay to mitigate that just so you can function and manage this situation.
You could try a therapist that specializes in trauma (this will involve some CBT probably, but as part of a mix) too, but please please talk to your doctor, or a doctor if you don't have one already. Talk about rescue meds (probably benzos), talk about whether there is an ongoing medication routine they feel is a useful form of support right now, talk about sleep. It could also take months, if you're in the US, to actually get started with a therapist you have a good groove with, so it doesn't really help you today. Support groups might help too, but it can be hard to feel comfortable at one when you don't entirely know what's going on yet.
posted by Lyn Never at 9:13 PM on February 16, 2019 [4 favorites]
DBT (dialectical behavior therapy) is a modified form of CBT includes things like mindfulness, acceptance, and distress tolerance. Sometimes people who don't find CBT useful will find a modified version of it more useful (see also acceptance and commitment therapy (ACT) and mindfulness based cognitive therapy (MBCT)). This is the workbook my therapist recommended: Dialectical Behavior Therapy Skills Workbook.
posted by carrioncomfort at 6:50 AM on February 18, 2019 [1 favorite]
posted by carrioncomfort at 6:50 AM on February 18, 2019 [1 favorite]
This thread is closed to new comments.
The thing that immediately popped out at me in your question was the line “I should be able to pull myself together and support him...”.
Please know that there are no “shoulds” in this situation—especially since this latest info is less than a week old. You’re going through a tough, uncertain time along with someone you love. It’s ok and totally normal to feel the way you’re feeling. You’ve figured out you need help dealing with it and are reaching out for help. That’s huge—lots of folks never get to that point.
Please be kind to yourself and allow yourself to feel All The Things. Sending a big hug your way if you want it.
(I can say that B12 deficiency is a pretty common cause of short term memory issues and in many cases is remedied by a series of shots. It doesn’t improve overnight, but it does help. IANAMD)
posted by bookmammal at 3:37 PM on February 16, 2019 [8 favorites]