My husband is 59 and 18 mths ago he retired after 30 years (police.) He's now a School Resource Officer. He's a forgetful type of guy, but it was never an issue and he was always one of the hardest working, most dependable, valued employees. In July our daughter (an RN) told me that she was concerned about his memory. Her prime example was that she spoke with him on his birthday, and then he insisted that they had not spoken. She lives across the country.
I’ve got my own examples that I’d been trying to rationalize - forgetting about a side job and not showing up (NEVER happened in his 30 year police career); forgetting the name of his barber of 20 years are just 2. Also insisting he had not seen a movie we watched together a few years ago. And while that might not sound serious, music, movies and tv shows are something he’s always had a perfect memory for. Down to little details.
I really started to think about the reason for his personality changes. Our marriage has been like crap for about a year, and during that time I’ve consistently been telling him that he has changed. I’ve used the words that “he is not the man I married.” As his behavior has become more of what I think is “strange,” I’ve become more worried.
He's always had a long fuse - I know how to light that fuse, but our marriage has always been strong. Even through difficult times. Now he has absolutely no fuse. I walk on eggshells trying to NEVER ignite it - but the slightest disagreement will set him off.
He’s a “nice guy.” It sounds generic, but it’s true. He’s a people person, sometimes to a fault. It’s what made him a great cop for 30 years. Now, I find myself worrying that he’s going to be mean to someone. During a visit with his family this summer, he was so mean to his brother’s gf that his brother is not speaking to him. During that same visit he argued with our daughter, and when she wanted to talk, he stormed out, slamming doors as he went. This was in front of a few people. He’s never behaved this way.
He has sleep apnea, which messes with his sleep patterns, but this summer (while not working because of the school calendar) he’s been sleeping until 11:00 a.m. That’s late even for him. He took a 3 hour nap the other day. He zones out in front of the tv or listening to music much more than he’s ever done in the past.
He’s had some situations where he’s exhibited poor judgement and/or inappropriate behavior. Nothing horrible, just embarrassing. I don’t want to go in to detail because even though we are anonymous, it still feels disloyal.
We went to our GP today. I arranged the visit, telling my husband that it was strictly about his memory, which again, even he has mentioned concerns about. I didn’t think bringing up his behavior/personality changes would help my cause in getting him there, so I didn't. Once in the exam room, however, I told the dr everything. I should mention that he seemed confused about why we were even there. He started telling the dr that we were there for some type of cardiac testing that he had discussed 6 months ago. Ultimately he didn’t argue the fact that it was memory concerns that brought us there, but I’m pretty sure it would have never come up from him had I not been there in the room. When he and I discussed making the appointment, it was very clear why.
I gave the dr info, none of which my husband argued against. He gave him what he called a “crude” test. Basic questions - date, President’s name, identify what his watch was called, spell a word backward, he had him remember 3 words, and had him count backward from 100 by 7’s. I thought he did well and was either “tricking” the dr, or my worrying had been for naught. The dr saw it differently. He pointed out that my husband took multiple times to spell the word “world” backward. And he said his backward counting was concerning. In the end, the dr said that he felt something was definitely not right. He’s said that my husband was much more “uninhibited” than ever before as well.
He ordered complete bloodwork and ordered an MRI. He’s working to rule out conditions. He said the when/if that happens, my husband will need a complete neurological workup.
If he told me that nothing was wrong with my husband, would I have believed him? That’s not what my gut is saying. I didn’t get a diagnosis and wasn’t expecting one. But the fact that the dr has very real concerns is scaring me. As I said in my title, I don’t know if I’m being a realist or a pessimist. These situations are complex. There are a million more things I could say, but I’ll hold on to them for now, as I’m sure I’ll have need for venting in the future. To anyone who has invested the time to read this, thank you. I’m not sure what type of responses I’m looking for, if any. I truly think it did me good to write it.
Suze - you are doing the right thing and so is the doctor. Since he recently retired it could be severe depression. There are so many conditions that are reversible that mimic dementia or have dementia symptoms. I hope included in those test is for Lyme Disease. The MRI should show if there is a unusual changes in the brain - otherwise shrinkage beyond what is normal for his age. But, there can be normal age related shrinkage and still be AD.
The test is called the MMSE. It can be an indicator but there are some who are advanced dementia can still get a good score on it, it all depends on the area of the brain affected. Try to keep him positive, if your husband decides he doesn't want to go do whatever it takes to get him to the next test. Probably if it comes to it, the neuropsych testing will be the hardest on him. Many of our spouses never finished it. If nothing treatable shows up in the test - which I pray does - if there are any good memory care clinics nearby go there. Otherwise make sure you get a neurologist that is experienced in treating Alzheimer's and dementia (not all are).
Keep us up to date and feel free to vent if you need to.
Suze, Welcome. I agree with Charlotte. You are doing everything right and so is his GP. Your story reminds me of our first days with this process and all the dread and fear that came with it. I don't know whether you are being a pessimist or not - the tests will tell and you still have a way to go. Just take it one step at a time.
Thank you both, simply for your time and words. At this point I'm trying very hard to respect my husband's privacy. I tend to be a true open book and I work very hard against all judgements and stigmas in life. The daughter I mentioned above suffered with an eating disorder for many years when she was younger. Since she was always very open, I took that as my cue and was alway advocating as her parent and talking to people about not being secretive or embarrassed about the condition. As a side note, that was one of the most difficult times in our married life - as you might imagine. But during all of the years of her struggles, and honestly all the years of our marriage, my husband and I were always a united force, 100% on the same page. This history together is what truly makes me concerned about his personality now.
I say all of that above as a prelude to the fact that my husband has a father recently diagnoses with Parkinsons/Dementia with Lewey Bodies, and he (husband) is having difficulty with that diagnosis. I can't count the times he's expressed to me his horror of ever being in a situation like that and how sorry he feels for his dad. It's part of the reason I've not even uttered the word "dementia" in our conversation when discussing making the appointment or even during the appointment. It's hard for me to judge what's going around in his head about the situation obviously. I know him well enough to know that he doesn't want to talk about it, and he knows me well enough (hopefully) to know that if he wants to talk, I'm there.
So I just want to say that I appreciate this community as a place to come and "talk" and vent. I have one very close friend who I've confided in, and she's great at listening. For me, it's helpful to come here for sage advice and informative reading of other people's circumstances. Thank you.
Welcome Suze, to a warm and caring place where yes, you can vent, and ask questions, and find caring support for others who know what you are going through. I found this page a year and a half ago and it has been a true life support for me where I have never felt judged.. My partner and I are now on the very last part of this journey. But I want to tell you that early on my partner and I used "memory issues" and 'short term memory issues" to describe what was going on. It alleviated fear. In fact when we would shop she used that term to help cashiers to be patient with her. I see nothing wrong with doing what you are doing if it works. I know some people get cards to pass to explain to others what is going on without having to verbalize it. Getting dementia is a very scary thing and that with losses of impulse control can impact the behavior you are seeing. It is good you are getting him the medical work up. Prayers and good thought going to you now.
Hi Suze--I agree with the others that you and the GP are doing exactly the right things. Take it one step at a time and see what transpires. Keep us updated if you get a chance--and feel free to vent, rant, ask questions...whatever. This group "gets it" when few others do. I received far more practical help and emotional support on this website than from anywhere else. (And I'm a nurse!) So welcome to our merry band here in Happy Hollow. : D
I am glad that your doctor agrees that something is wrong.
Sounds like it might be Frontotemporal Dementia (FTD) since your emphasis is on personality change. I recommend reading "What if it's not Alzheimer's". Most doctors, including neurologists, are ignorant of FTD.
Scans, including MRI and PET, often show no damage in the early to mid stages. You want the scans read by a neurologist who is an expert in dementia, radiologists are going to miss subtle signs of dementia. But if the scans do show damage that will be a significant item.
His doctor conducted a MMSE exam. It is quick but a poor exam for any sort of dementia, especially FTD (my wife scored perfect on her last MMSE a few years ago). Talk to you doctor about having complete neuropsychological testing (6-8 hours). This is the gold standard for diagnosing FTD and should reveal any cognitive issues.
If you think FTD might fit your husband's case check out http://ftdsupportforum.com.
Welcome Suze. I echo the above comments you and the dr. Are doing the right things. One day at a time and try not to get Head of yourself. I know for us it seemed to take a long time to get a diagnosis of Alzheimer's. When you are young, my wife was mid fifties, nobody wanted to us a diagnosis of Alzheimer's they want to make sure everything else is ruled out first. Understandably. If and when a diagnosis comes, and I hope it doesn't, it can be devastating but then at least you know what you are dealing with. Prior to the diagnosis I was a wreck not knowing, not always responding The way I should after the diagnosis and getting over the initial shock then it was ok now let's move forward. Lisa is now 61 and has been in care for over a year but we managed after diagnosis to have many good years together, not easy times, but many good times and good memores. Getting a diagnosis does not mean life is over. So again one day at a time get the testing done try not to get ahead of yourself there can be many causes for the symptoms you are describing it is a process. Finally enjoy the time you have.
This site has been a lifeline for most of us. No judgements but lots of support and advice. Good luck.
Suze, I second Paul's recommendation of http://ftdsupportforum.com as another source of support. Diagnosis is hard to come by, and there are many varieties of dementia.
I also thought of FTD because of the personality changes, but I hope it is not that. We had the opposite experience as paulc did with an FTD diagnosis. My husband was misdiagnosed with FTD by his neurologist, who stuck with that dx even after the results of the all-day neuropsychological testing showed otherwise. (I found out later that this neurologist diagnoses almost all of his dementia patients with FTD.) If it does appear to be FTD, then by all means look at those forums but I would recommend not jumping the gun here, as I did. I already knew a lot about Alzheimer's, since my father had it, but I read up on FTD as soon as we got home from our first visit to the neurologist and it was too much for me. I just went into a downward spiral emotionally. So I suggest you take this one step at a time.
I second on not getting too far ahead. While waiting for the testing, if not already done work on getting legal paperwork done including power of attorney including financial and medical. Another is any retirement accounts he has, check to see what is needed if he becomes unable to deal with finances. This can all be done jointly, not just for him. So many of us wait until we have to thinking we have plenty of time.
Welcome Suze. I disagree with taking it slowly especially if your husband's father already has that diagnosis. By ruling out everything else first your Dr will be taking you on a very slow road and not knowing is far worse. All the symptoms that you mention resonate with me as my husband had ALS/FTD and that is very similar to what your husbands' father has. All the best.
Suze, thanks for sharing. After a long close marriage you can feel so alone. My wife started with memory issues when she was about 66 years old. She also started off with TIA, then simple partial seizures. She had those ever 5 weeks or so. Each time more memory loss. She has had Nemenda from beginning and activia last 3 years. She has had personality changes but, she still thinks it is just a little Memory problem. Seems all these cases are a little different from each other. Be prepared, one day he might ask who you are. When you are with your loved one 24/7-365 it is going to be hard. No way around it. Take care and hang on for the rest of your life.