Calling all FTD Caregivers!
It was suggested in JeanneC's last thread that maybe a new thread directed at FTD caregivers would be beneficial, so here goes.
I too am part of the Caregivers of FTD club. After my husband had his first MMSE 3 years ago (he scored a 17), none of his doctors saw any purpose in administering another. About 18 months ago, I administered my own, just to see how it went. I scored him around a 10, and that was being generous on time and instructions given. My DHs atrophy is mainly on his left side, (Just like Bruce Willis!!), so his language skills continue to decline, but other than that there is so much of him that is still functioning fairly well. I always tell people that I have to write down the various things that happen throughout the day so that I can go back and make note of the changes because they seem to come in waves. When I think of all the things he can still do, I have to remind myself of all of the things he cannot.
Jeanne, you talk about keeping the emotions in tact in front of your husband, that isn't an issue with me because my husband no longer recognizes feelings in others. I could cry all I want and the most I would get out of him would be a jumbled sentence to convey "why are you doing that"
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My husband's reactions to emotions are interesting. He definitely feeds off of my reaction, like he'll laugh because I think something is funny or get more stressed when I'm stressed. At times he goes out of his way to make me smile (like a little kid trying to get mommy's attention). He doesn't pick up on emotional cues from other people though. In fact he doesn't pay much attention to others outside of his group (me, a couple of close family) and any time he sees a kid (he will engage with any kid he sees but never notices the uncomfortable reaction of the parents).
@CStrope it's interesting that you keep a journal of changes. Others have mentioned the idea. I make notes before appointments and look back at the previous notes so I can identify changes. You're right. It does seem to come in waves. And it's hard to see when you're in the middle of it.
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This thread is a great idea, thank you both for thinking of it and starting it.
Peggy also has FTD, as well Alzheimer's and primary progressive aphasia (the logopenic variety). I've been told that's the rarest form of PPA.
About emotions - Peggy's more like @Jeanne C. 's husband. She'll mirror whatever my emotion is, so I try my best to keep things light.
She's now entering stage 7, and she's declined severely over the last month and a half.
She still knows who we all are, although she's pretty iffy on whether or not our parents are still alive (they aren't).
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I am brand new to this group, my husband was just diagnosed with FTD. It has been a very stressful week since we have learned what we are dealing with. He of course says all of the Drs are crazy and don't know what they are talking about. I haven't stopped crying since the Dr sit me down and told me there is nothing they can do for him, that I should get a lawyer, get all our affairs in order ASAP. This has all happened so fast.
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I'm so sorry. It's hard, but we will support you. I was in the same boat a year ago. I suggest you make a list and go this one item at a time. It helped me to compartmentalize. Focusing on one thing at a time helped me keep from melting down all the time. Yes, lawyer is critical. You will need a certified elder law attorney (CELA). Not only will they help you get your documents in order, they can be your best expert on long-term care medicaid. I was truly shocked by the services available to us. Learn what you can and try to find a good specialist for him. Medication management will be important. You really want a doc who specializes in dementia and memory care.
Also, learn about anosognosia. Basically, your husband isn't in denial- he literally cannot see that he's sick.
Please post questions and vent when you need to. The people on this forum are incredible and probably know more about dementia than many medical professionals.
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I didn't realize Peggy has FTD. Looks like we're in a club that no one wants to join.
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@hartmann1701 welcome to the forum. Sorry you are dealing with this now. But it's a great forum, and you will get a lot of help and support here.
"He of course says all of the Drs are crazy and don't know what they are talking about." This is likely anosognosia, and here is a link explaining it. Why your loved one doesn't believe they have dementia- It's NOT denial.
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One big issue with FTD is that there are several variants and these have sub variants. Particularly in the middle stages the PWD's symptoms and care needs are quite different in the various forms of FTD. And as has been mentioned on the forums many times, drugs that benefit Alzheimer's may be without any benefit for FTD and may even be contraindicated for FTD.
The diagnosis of the variants and sub variants can also be challenging because some are rather rare and PCP's in particular may have no experience with them. My DW's condition was not recognized by her long time PCP probably because her Semantic Dementia is exceedingly rare and the early and middle stage are not characterized by problems with memory or orientation. We had to leave our Medicare Advantage plan (just in the nick of time during the trial period) so that I could get her seen at a major university teaching hospital with a strong dementia department. Even they spent several long sessions with a professor of neurology and a professor of neuropsychology both specializing in dementia and they ordered both an MRI and a PET scan before formalizing DW's diagnosis
Another near hurdle we encountered was that in researching MCFs I found that some do not like to take patients with FTD, or will have a cap on the number they will allow. The major variant of FTD is of the behavioral type [bvFTD] and the poor PWD can be very difficult to care for. (My sympathies to those caring for someone with bvFTD.) Some MCFs seem to be afraid that even those with non behavioral FTD variants will nonetheless end up being a problem.
I can say my DW's care during the middle stages was somewhat different than what others described for Alzheimer's. However she is now well into Stage 7 and at that stage the care demanded of all dementias sound very similar.
Hope this continues something to the discussion.
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@Jeanne C. - yeah, sadly she has a lot going on, none of it good.
Isn't there a quote about not wanting to join a club that would have me as a member (or words to that effect)? Can't we just quit this club on those grounds? 😉
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Here is a very detailed link re the different types of FTD; well worth reading:
Even with the specific types of FTD, not everyone will develop all symptoms as described in most writings, and may well develop some changes not mentioned. That is the nature of most dementias. I know when I went to the assn. for FTD, it listed so much not on our radar screen and never mentioned much that was. Each person is unique unto themselves.
My LO had the behavioral variant of FTD (bvFTD). There was during earlier years, no semantic or swallowing difficulty; nor was there any difficulty with body movement until late stage - BUT there certainly was a huge change in behaviors which eventually became terribly delusion driven on a consistent basis. There was a breakdown in ability to use logic, judgment and reasoning, however; the ability to be connected to the here and now and to retain memory stayed until the very last months which occurred about eight years after diagnosis. I feel firmly convinced that there were changes for several years before the symptoms became significant enough to lead to assessment and diagnosis. Not florid, but nevertheless, behaviors we simply chalked up to her usual "in control" self but only moreso.
The first thing that caused an uh-oh and drove the need for an assessment was when I stopped to visit after work one day. She had a box filled with papers; bills, receipts, tons of it . . . and her checkbook registers which were a mess to say the least. She had always been excellent with finances so that was a bit stunning. I took the box home; oh my . . . . some bills never paid; homeowners insurance cancelled for non-payment; and the telephone bill and others paid multiple times, some items overpaid and never refunded etc., etc.
I recovered $8,000 in overpayments and errors. Had to re-order insurances, etc. Also, she had begun operating on irritability and not based on reality at intervals. She had two MRIs; they were unremarkable. Her primary MD - a Board Certified Geriatrician diagnosed her with Alzheimer's Disease and started her on medication. Within a day her symptoms far worsened. I also realized that her symptoms were atypical for Alz's; her doctor was not swayed, so I found a good Neurologist who routinely sees dementia patients as part of his practice. He discontinued the earlier prescribed meds which made a difference.
An exam and reassessment was done and a SPECT Scan was performed. There it was; as clear as could be - FTD. Onto the learning ladder I went - rung by rung slipping and sliding.
Memory and function were good. Ordering items from catalogs; furious about everything; centered her anger and delusions upon me; hated her sweet elderly husband. Tried to order a $10,000 golf cart; never golfed a day in her life nor could she had driven it. Threw a book at me that I gave her as a gift of an author she usually loved reading because I did not know how to even pick out a book. Later found out that she had issues with the written word, (I had her screened by an ophthalmologist.) Both her and her husband refused moving to an adult child's home or to an ALF. She began to try to control everything and accused me of stealing her bedspread; her purse; robbing their bank accounts; and on and on. Tried to control foodstuffs and refusing her husband food - tea and plain lettuce was a meal. Gave belongings away; rifled through important papers and gave or threw away old family photos.
I was working and had hired day time help which turned into 24 hour help but aides kept leaving due to her behaviors. After work and on weekends my car knew how to get to her home all by itself! She even phoned police detectives to turn me in for stealing from her bank accounts - fortunately the bank manager knew me and when the officers did their investigation they found nothing amiss whatsoever. I also had been saving billings and receipts in files should there ever be any questions . . . . anything new coming into the house caused MAJOR meltdowns; out went the new crockpot; and when her vacuum died beyond repair; the new one caused such shouting and acting out, it had to be hidden in an outdoor storeroom and used when she was out of the house. Her poor aged husband; she kept him awake at night careening from one attack to another. No amount of striving to follow best practices helped. Later, could not find an agency willing to place due to behavioral issues.
She later eventually lost the ability to walk; could not read and lost the ability to watch TV - could not follow the action; even people walking past on a sidewalk or cars driving down the road caused upheaval as she could see movement but could not follow nor define as movement was too fast for her to process and it caused much upset.
It was a nightmare. POB was useful to keep finance papers and catalogs out of the house. I did credit checks with all three credit bureaus and found no less than sixteen open accounts - oh my! To close, each wanted a complete copy of their Trust and DPOAs and it would take a month or so to close the accts. So . . . . I did the best I could - I called each credit company and pretended to be my LO. I knew her mother's name, SSN; etc. and the accts. were closed on the spot.
It was an overwhelming, beyond difficult time and I tried so hard to make things as best as could be for her and tried to delight or even quietly please her which never succeeded. I would wake up in the wee hours of the morning; one or two a.m. thinking and thinking what was i missing or overlooking; what could I do better? Of course; nothing. It became necessary to place due to the 24 hour behaviors and aide issues; Neuro prescribed Risperdal which was a miracle in how it helped; but she was not at all comfortable at home and I realized later after one return home and resurgence of behaviors that it was that she was so used to running and tending to the house, that it triggered her angst and agitation. She was placed and amazingly as much as I went home and cried and worried myself silly, she did better. Triggers gone. I visited often after work and on weekends and kept touch with staff. At the latter stage, she could no longer swallow well at all; did not know who I was which I accepted and eventually at the very end lost even the ability to purposely use her arms. By that time she was on Hospice which gave extra eyes, ears and hands in the care facility which helped me a lot in knowing there was that oversight.
I will say one thing with certainty . . . if they are driving us to absolute distraction; imagine how horrible it must be to live inside their heads - not only believing all the delusions, etc.; but FEELING them. It is hellish; they must depend upon us to find relief for them. I would say one thing based on my experience; if the delusions and behaviors are affecting the quality of your LOs life and you do not want to use an antipsychotic; please sit down and think about it. Our LOs in such a condition are suffering horribly and we can help them. I delayed permitting Risperdal to be prescribed due to concerns about the black box warning - it was such a little miracle when prescribed that my only regret is, that it was not started sooner.
There is NO perfection in any of this - just the best we can do under the circumstances with the challenges at hand . . . . at the very, very end, all the dreadfuls passed from my LO leaving her calm and seemingly at peace. Just continued to love and regret.
Please do not feel guilt - you are doing the best you can and we all have our own meltdown points - we are human and exhaustion is not our friend - Regrets? Yes; but no guilt.
J.
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My husband was diagnosed with bvFTD/Alz but not many of the symptoms usually listed seem to fit the FTD. He has never been aggressive or violent, only very agitated before medications were prescribed, doing things over and over and over again, all day and in some cases, all night. When I tried to stop or redirect him it was like he didn’t hear me, looked right through me and kept doing whatever it was he was preoccupied with. He’s been through numerous CT scans, a PET scan and MRI. Results were inconclusive but PET pointed in the direction of FTD. He has also gone through hours of verbal tests. Like Jo C mentioned, Risperidone was the only medication that made a big difference. When Memantine was increased from 10mg to 20mg per day, that helped also. According to his neurologist’s office he is stage 6-7. I see only 6.
At one point he had problems swallowing many foods but now can swallow most things easily. He needs help with eating because he will get distracted. He needs help with showering, dressing and is urinary incontinent and when he had a UTI was bowl incontinent some of the time. He lost empathy at one point but with the meds, it came back. He is confused much of the time, but still shows concern when I am upset and still motions for me to come sit next to him when we’re watching tv at night. He whispers all the time, only talking out loud very occasionally when pressed. He doesn’t talk much but can still read out loud (whispering) although he can’t remember enough sentences in a row to read an article.
After the last UTI, his walking is affected. He is back to shuffling around again but I have to watch him all the time because of balance issues. A little over 2 years ago he was walking over an hour every other day. Now he only wants to sit and watch tv, although I get him up periodically to walk around the house. This disease is so horrible and confusing.
I am his primary caregiver and my sister who lives here helps watch him. He lives at home and I will hopefully be able to care for him here for the duration. Dementia or not, it is hard to imagine life without him.
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Thanks everyone for sharing your stories. And @Jo C. I hadn't seen that page before. Very informative - really pulls together informative I've seen in bits and pieces nicely. Thanks for pointing us toward it.
Does anyone else feel like it was harder to accept the diagnosis because it doesn't seem like what we typically think of as dementia? For a couple of years prior to diagnosis, I thought my husband was becoming a jerk - I never thought dementia or any kind of cognitive impairment. It wasn't until I started seeing more typical symptoms like confusion and forgetfulness that I saw a red flag. And how guilty do I feel for being angry at him, not realizing he was sick?
His first major incident was just over a year ago (someday I'll tell that story, but it's still too upsetting). Like some others mentioned, Risperdal was a lifesaver. It has toned down many of the behaviors (paranoia, anger, aggressiveness). He still has delusions, but it's more manageable for me and less anxiety-causing for him. That's truly the important thing to me. I don't want him upset. I can't even imagine how awful it is to be confused and anxious all the time.
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@Jeanne C. I can't actually say that the diagnosis was hard to accept because of any thoughts I had about what dementia is like. I've never known anyone with any kind of dementia, so I didn't know anything about anything. So when Peggy's doctor said Alzheimer's, FTD, and Primary Progressive Aphasia, I was overwhelmed. It was all just too much, all at once.
The doctor briefly explained each of them, and then kind of sent us on our way (Peggy wanted me and our cousin in the room with her when she got her diagnosis - which is very Peggy). I wasn't sure what to do next, so I just started reading and trying to understand what this all meant. Of course, the more I read, the worse it all got, but I had to know.
I'd seen little things in the couple of years prior to Peggy's diagnosis, but the big red flag for me (as I've written before, sorry to those who have heard this before) came in Feb. 2018. She wasn't diagnosed until Aug. 2018.
Peggy drove up to see me and my S.O. in San Francisco. She'd been to our apartment a million times over the previous 20+ years. On this day, instead of driving to our apartment, she drove to a lot over by the ball park, which is nowhere near where we lived. Then when it was time to for her to leave, she couldn't find her car. At one point, after about two hours of looking, we sat down to regroup. Peggy said, "oh well, I guess it's gone. I'll have to get another car." My internal response was "what??? No one does that." Instead, I told her the car is in a lot, no one is going to tow it for at least 24 hours - we'll find it. And we did - after about three more hours. But her extreme apathy and resignation about her car really surprised me. To this day it still kind of surprises me that that happened, even though I know now that I seeing the FTD. Also, her word finding issues (the PPA) showed up too. When I asked how the cars were parked in the lot, she said that some of them were parked linearly against the wall. It took me a few minutes to realize that she meant they were parallel parked. She just couldn't remember the word "parallel."
@Jo C. thank you for that link. Really, really useful.
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Thank you Jeanne C for this thread. My husband has some type of FTD. His primary is aware and initially did the memory test which, of course, he did pretty good on. He refused any further testing. It is now 2 years later and he is still upset she did a "brain test" on him. I see so many symptoms of his in these comments. And yes, because his memory was so good I was very confused. How could it be dementia when he had no memory problems? His first 2 years were definitely the anger phase. It was awful and he is thankfully past that now. I am going to start another thread re telling others to get more responses. And, Jo C, I read the link and it was very helpful.
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Maggie may thank you for sharing about the swallowing issue. This is something that has went on with my mom and was a little hard for me to figure out. Now at least I know I’m not the only one seeing something like this.
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Best to get a swallow test. Usually performed by Registered Dietician in Outpatient Radiology Dept.
Person need not undress; nothing touches the patient; simply sits on a guerney with a small scale fluoroscope in front of the patient - no noise, nothing touches.
The Dietician gives the person small bits of different items to swallow - bit of applesauce, bit of cracker, some water, etc. The fluoroscope follows the mouth and tongue with chewing and then follows the swallowing in real time. Fascinating to watch.
This way, the Dietician can assess if there are swallow issues and just what and where they are. She/he can then prescribe assistance and diet.
Must say; I did not have 24 hour care responsibility of my LO, nor was my LO a spouse; very different dynamics from those who are at home caring for a spouse or other LO 24/7; but still very, very, very hard and stressful.
Hugs to all who strive and care.
J.
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My DW in Stage 7, is "pocketing" food and liquids, i.e., not swallowing what's in her mouth. She has had two swallowing tests. The conclusion was that she did not have any physical problems swallowing. She just doesn't think or remember to swallow what is in her mouth. This has significantly complicated feeding her.
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Just got the Ftd/behavioral diagnosis today for my DW. It’s moving from frying pan to the fire. Basically there is nothing to treat the disease as opposed to alz where there is now some hope. Reading what to expect coming up is incredibly difficult to wrap my brain around. I know it is incredibly hard on the DW but the limitations now on our everyday living is traumatic for both of us. She is just starting the lack of filters stage to go along with a cheating husband delusion Honestly the 2 together make me want to not leave the house and the lack of trust that is appearing is demoralizing. Up to this point I have been feeling like I’ve got this and can deal with it but now it’s like the whole world crashed
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Thank you @CStrope for starting this thread, @Jeanne C. for alerting me to it, and everyone who has contributed to the discussion!
My husband, 64, was diagnosed with FTD in May 2023 and I have been voraciously seeking and consuming any information I can find on the subject since I first suspected he had this horrible disease. He seems to have a somewhat rare presentation of FTD. His appears to have started primarily in his right temporal lobe and has progressed to his left temporal lobe and bi-lateral parietal lobes. Imaging doesn't show frontal lobe progression yet, but his dementia specialist feels certain it's there. My research indicates that the right temporal lobe is responsible for social behaviors and emotions. The left is language. He scored a 16/30 on his last Montreal Cognitive screening in August.
It's absolutely unbelievable to me he is still functioning as a CPA at work. In June I informed his employer of his diagnosis. They had noticed odd social behaviors, but said he is still performing well with his analysis and written work. I am grateful they have agreed to keep him on for the time being. My husband is and has always been a workaholic. Working makes him happy. I cannot imagine the day when he has to give it up. He has anosognosia and other than his perceived occasional memory issues, doesn't think anything is wrong with him.
@leasdad I remember vividly the initial shock of suspecting my husband had FTD. None of it is easy, but the immense grief I felt in during that period was unbelievably painful and something I doubt I will ever forget. Educating myself and working through the necessary to-do list helped me. Oh, and this amazing support forum. We are all here for you.
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Thank you and yes this forum helps so much. The hardest for me is that she can self function but the personality change is so opposite of who I married. There is a tremendous lack of trust on DWs part. I have to prove everything i do is in her interest. Every medication is now questioned even though she has been taking them for months. Every phone call every text any time I move out of the room. Like being in a lock down
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I’m having basically same issues other then meds issue. Question everything I do who. My wife functions fine just repeats same ???
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hopefully she is not questioning your fidelity like mine is. It just cuts my heart out every time and it seems to be happening more and more
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She doesn’t at times but with other matters
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I’m so sorry We get to the point in life we have been looking forward to and it gets bashed.
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I used always use expression “ it could be worse” but think forgetting your life can is it
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This is what really gets me down. I just turned 61, and DH is 69. 3 years ago when we had his first MRI and started his diagnosis, they initially said Alzheimer's. Then, 2 years ago his dr. put in the after visit notes that he suspected it was FTD more than Alz. Then a little over a year ago, his newest after visit notes stated that the dr. was now convinced that it was FTD rather than ALZ. The possibility of FTD never once was discussed in any of our appointments, and I questioned the efficacy of his Aricept and Memantine, and also questioned his first notation of FTD. He continually just stated it was Alzheimer's/logopenic variety.
Bob has very little language comprehensive. He talks, it just either doesn't make sense, or the sentence has no context to anything. He retired from over 25 years of HS teaching 5 years prior to diagnosis and was able to use his retirement as an excuse for all of the "issues" we were noticing. Bob taught science, and specifically anatomy/physiology, so watching him go through these changes is especially heartbreaking. Throughout our 37 years of marriage, he has never taken care of household things, yard things, or financial things. He was a teacher 24/7 and 365 days a year, he was completely committed to his students, so there were no deficiencies to trigger me to know anything was wrong. It wasn't until his short term memory started getting bad, and his sentence structures changed that the light really went on for me. His MRI showed significant atrophy on the left side of his brain, and like Jeanne C, our marriage was struggling greatly for several years before diagnosis because he had become such a jerk. My daughter repeatedly recommended I file for divorce. One time I asked him to go to counseling and he told me he'd divorce me rather than do counseling!
So, here we are. He seldom sits down and paces around our relatively small home the majority of the day. He snacks continually and will often binge on snack foods if I don't limit his access, but he has no ability to even pour a glass of milk or make a cup of coffee. Showers are a major issue, and can only be accomplished once every week or more. He tries to read, but struggles and reads at about a 2nd grade level. He struggles to put on clothes, and will only agree to change when absolutely necessary, wearing the same thing for several days. As of now, we have not had too many issues with incontinence, though he does use a variety of non-toilet locations around the house during the middle of the night. As for bowel movements, he seems to not understand the feeling of needing to go, and will resist the urge for several days before going. He has no concept of cleaning himself afterwards, so poopy underpants are common. We had a period of about 6 months where he was extremely combative, and punches were definitely thrown. Thankfully that has not been an issue any more.
In public, he can manage to greet people and appear almost normal, though he has no idea who he is talking to. It makes it difficult, because other people are left with the illusion that he's doing pretty good.
I am an extremely analytical person who still works full time from home while taking care of Bob. I struggle not knowing how this horrible disease will progress. I often say I wish there was a detailed model of the brain that someone could take out the pieces that are no longer working, and show me what is left that is still functioning.
I started therapy yesterday, and spent my first hour appointment crying........that's where I am at
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No where at that point with wife but I’m dreading it,
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i am so sorry to hear what you are dealing with. My DW is a bit earlier along the path but we are struggling too.
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DH is on anti-depressants so I usually don't have to many problems with him being "down", but this past week it seems like he's been crying a lot. He can't ever find the right words to express himself in any situation, so asking why he is sad is even more difficult. The other day I was working and he came in and was crying, mumbling all sorts of things that I couldn't understand. Then he finally looked at me and said, "When I go it will be okay". He repeated that a couple of times. I couldn't figure out if he meant memory care, or death, or whether he was talking about something altogether different and I was just reading into the words that he was using. Then yesterday, he was crying again, and I tried so many different ways of asking him how he was feeling and why he was sad, his responses seemed even more jibberish than usual, until he finally said "I'm gonna go up there" (pointing to the ceiling), making me wonder if he was talking about heaven or was I once again trying to put logic to otherwise illogical ramblings.
My biggest fear is when/if I place him in MC that he will feel like I have abandoned him. So many people keep saying that he won't know the difference, but situations like these keep making me think he will. Sometimes I feel like there are distinct differences between FTD and ALZ, and having an understanding about what is happening seem like it could be one of those differences.
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@CStrope - I definitely think he'll know the difference, but I also think that in time he will accept it. That's what happened when I placed my sister. At first there were a lot of meltdowns, but once she realized that all of the caregivers actually care about her, and that I was still very much in the picture, she calmed down. She even told me she thought she should have moved there sooner - which was a shock to me, but a happy one.
Of course, everyone is different.
A thought about what might be causing the tears ... maybe he's having trouble navigating his living space and is really stressed out about it. I know this was a thing for Peggy, although I didn't see it in the moment, I saw it in hindsight. She just didn't know what to do around the house - and this was the house she grew up in. Memory care tends to be uncomplicated in the physical layout, which really helps. So, I don't know, but it's just a thought.
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@CStrope that must be so hard. It's heartbreaking when they struggle. We went through something similar a few months ago. There were a lot of crying episodes and talk of death along with increased confusion. After ruling out a UTI, his doc made some med adjustments that really helped with anxiety and sleeping.
I have the same fear you do about MC. I'm in the process of setting up home care for him, but I'm trying to be realistic about our future.
Hang in there.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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