I feel so lost

Treading_water

Hello..I am new here. We’ve had a diagnosis for over a year of Frontal Temporal Dementia but we are 3 years into the process. It took 2 years to get a diagnosis and I thought I was handling things but as his symptoms continue, turns out I’m not doing as well as I thought. 

My best friend, the person I would turn to when I needed to work out any problem, the person who would tell me it’s going to be ok and let’s figure it out used to be my husband. But he’s not that person any more. So I feel very lost and alone. I’m grieving the loss of my husband with him right here…or someone who looks like him but is no longer him…if that makes sense. I miss him so much.

I feel like I am constantly tip toeing around him because he sees any kind of question as a threat to his autonomy. If I say “the reminder went off to take your pills…did you take them?” I am “nagging”. The very first time I ask.  I can’t let him manage his own meds or he doesn’t take them at all or he thinks he did take them but he’s thinking about the day before.  He fought me very hard about setting up a reminder with Alexa every day and for me to fill the pill container each week. 

  He is becoming progressively more belligerent if I question him in any way. Anything other than straight agreement to whatever he wants to do is met with anger and me being accused of being difficult or always thinking he’s wrong. This is not because I’m being oppositional at all…it’s literally me asking a question. So if he says I want to do X and I say “ I thought you said we were going to do Y…what made you decide on X?” He will become mad and say he never gets his way and he wants a divorce. Like 0-60 in nothing flat. 

I know this is disease. I get that logically. 

But it’s still frustrating to deal with this on a daily basis. In his own mind he often thinks he’s fine. Other times he’s aware he can no longer remember his own address.  He sometimes says I don’t think I have dementia at all…because he can’t see himself on the outside and see that he can’t think critically like he used to or follow cause and effect any more or even remember he’s asked me the same question 5 times. He can’t see how impaired he is and how much he’s changed in the last few years. 

I’m struggling with how to deal with all of this. 

Lorita

Hi,

 Welcome to the forum.  It's good you've found this place where there are so many people who have dealt or are dealing with the same things you are.  It isn't easy -  no one says it is.  You learn as you go, day by day.  Take things as they come - don't try to deal with more than one thing at a time (as if that's possible).  Go with the flow, pick your battles, don't argue, don't correct but redirect.

 I was caregiver for my husband for seven years.  I was lucky and was able to keep him at home until the very last.  He always took care of taking his medications until one day he told me he could no longer do it - I would have to take over.  Charles, for the most part, was easy going.  There were times when he became combative and aggressive and times when he just walked off.  My neighbor and/or I were able to get him back home. 

 I think, as they say, if you meet one person with dementia, you meet one person - meaning they're all different, yet the same in many ways.  Rest when you can, don't sweat the small stuff and just enjoy the good times you do have with him.  Read the questions and answers on the forum and learn what to expect.  When Charles was diagnosed I knew nothing much about the disease although my mother had alzheimers it still wasn't the same as dealing with your husband.  I started the thread that's still going - just needing to talk with my friends and learn from their experiences.

 If you have a question, no matter how small or insignificant you may think it is, ask and someone will always be there with the answer for you.  You're not alone in this - we've all been there and are here to try to help you. 

 Above all, at least to my way of thinking, is - enjoy the time you have with him, when he's agreeable and easy to deal with.  You'll be happy you did.  In a way, these times will help you through the less easy times.

 Again, welcome.

Rescue mom

Several of us here have talked about how hard it is when our LO is sitting here, but their personality is gone, or changed so much. The body is here, but what made him “him” is not. It’s like extended grieving. The person we loved is gone, but we still must provide care.  It’s hard, you have to find what helps you get through. Others say whatever gets you through, do it. We have lost our partner, and it’s lonely and hard. That’s the card we’ve been dealt. We have to play with it, only it’s not fun playing.

In my experience, best to stop asking those questions, especially questions like “why do you” or “why did you..” . They cannot explain, or be rational, and asking causes frustration and anger. Don’t ask, just tell them what they need to know. If what they’re doing is not dangerous, I tend to let it go, even if it doesn’t make sense. They can’t explain, and if no harm caused, why create upset? Don’t keep telling him he has dementia, he will not accept it, cannot understand it, and it make him angry. No point in trying to “convince” him that he is sick, or even wrong about much. He cannot comprehend that now.

One of the hardest things for me was learning to live without my partner. We always discussed everything, I asked him about almost everything. That doesn’t happen now. He cannot understand it. I finally realized I had to save that energy for other things, discussing with him is pointless (unless I want to talk to myself), and that time and energy can be used better elsewhere.

If meds are a regular problem, maybe find ways to get them in him without him knowing. Perhaps combine with food. Many can be ground up so they’re not noticeable, but be sure that’s ok for the particular med. Or try bribery? “Take your pills and then we get ice cream.” Don’t ask if he took them, you probably have to keep up with that now. 

With such belligerence, I hope you have removed all weapons such as guns from the house. Keep your cell phone near, and have a plan and a safe room you can go in and lock, or leave immediately, if needed. Do not hesitate to call 9-1-1. Spouses here have been injured by a LO in a fit of anger. They don’t mean to, but that does happen. Keep yourself safe.

M1

You have come to the right place to find some understanding and sympathy.  It's so hard to have to look for it elsewhere when you "lose" your spouse or partner who used to give you those things.  FTD is an especially brutal variant.  I hope you have good medical support, for what it's worth.

My partner used to be furious when I first started supervising her medications (there are multiple--twelve or thirteen I think).  What finally worked was for me to just remove the pill containers and weekly pill organizer from her space altogether.   Written and aural reminders, etc. do not work after a while because they become meaningless to the PWD, just as time becomes meaningless.  I keep all the meds and pill organizer separately (we have separate bathrooms), and just physically hand her the pills when it's time to take them and make sure I see her take them.  Nothing else worked.  I keep up with the refills and do the communicating with the docs.  This worked in part because I pulled "professional rank" (I'm an internist).  It hasn't worked in other areas where she still resents loss of autonomy--driving being the main one we still have conflict about.  Finances is another, but I have found workarounds there, which includes tearing up checks when she writes thousands of dollars to animal charities.  I haven't found a way to take the checkbook away altogether yet.

Do read lots of threads and come back a lot.  It's safe to vent here when it might not be at home.  

There is a good editorial in the Washington Post today about how wives generally have to do more of the invisible "mental work" to make sure households run smoothly.  When your spouse has dementia, that mental work becomes exclusively the job of the caregiver spouse, regardless of gender, and it's very hard.  

ButterflyWings

Treading_water,  same here. My sentiments exactly.

I literally could have written your post. Thank you for naming what it is like to lose your sounding board and life partner while they are sitting right next to you, and can't help even sympathize much less problem solve together. It sucks and it hurts. Yes, you've said it all.

My DH now has full blown anosognosia, so he has no concept that he is impaired. That is a blessing I feel, since he doesn't have to be sad, mad, or afraid about what's happening to him. But boy has it made it harder on this end, with me having to bar him from things he still feels completely capable of doing. I took the anonymous approach to disappearing car, weapons, etc...but this is not the role I ever expected to have in our fairytale gone south with AD.

In addition to everything else that dementia takes from us, I have had to shut down his business, pack up and close the office, etc. a decade early (our now irrelevant retirement timeline) and there was no way to pretend, divert, or distract from any of that. He still was aware then, but upon diagnosis, Drs said shut it down like yesterday, so I did. (Looking back, I still don't even know how I got so much done) but that was a really hard time because in addition to wanting to have my best friend and love of my life work through this together as we always had done, he felt disgusted, angry, betrayed -- by me. 

So very sorry you have to be here, but welcome to a very strong support team. Feeling lost many days, yes, but at least we've found our "tribe". Everyone here gets it and can help think through pretty much whatever dementia throws at us. And it will.  I'm still treading water too. We will stay afloat together.

Treading_water

Good advice. Thank you so much. 

The only time I try to convince him he has dementia is when he starts talking about how he’s fine snd he can drive. I’ve hidden the keys and I’m selling his vehicle so that he cannot follow through on this…but you are absolutely right. There’s no point trying to have a logical discussion with someone who can’t follow logic anymore. 

I need to switch to more passive ways of redirecting him. 

Treading_water

Thank you so much. My friends have been very understanding but I don’t want to be that one friend that is always such a downer. When they ask about how things are going I tend to say fine because I don’t want to get into it with them. It’s left me feeling very isolated. 

I am glad I found this community. 

Treading_water

Hello and thank you so much for the kind reply. I’m really hoping to be able to care for my husband as long as possible too. 

One of the things I’m struggling with is that it seems like there are a lot of things that I won’t know are a problem until it IS a problem. For example…I won’t know he’s no longer safe with knives until he cuts himself. I want to give him as much control as I can while being safe at the same time. I’m not sure of how to sit and wait for problems to pop up if that makes sense. 

Treading_water

Thank you so much. Just knowing someone else knows and understand what I’m feeling is HUGE. I’ve felt so isolated afraid to even express these thoughts.

hvhartman

First, the previous posts have great advice - practical and effective.

Second, you have taken an important step by acknowledging your situation, talking it out and asking for help.  Please continue to post whether with questions or just to vent.  After having a spouse as a companion for so long it is jarring and lonely to find you no longer have them to turn to.  That was probably the hardest single thing for me to cope with.  We are all here to help and mutually gather strength in sharing.

Third, reach out to as many other potential sources of help as you can find.  Local support groups, senior services, legal advisors, church or other sources of counseling, or anyone who can advise, support and assist.  I found it helpful to engage with a caregiver agency to provide in home assistance before I fully needed them and got part time housekeeping assistance as well.  Just made life easier for both of us and become more necessary as the disease progressed.  

And finally, have faith in yourself.  You have gotten this far in life and have strengths you may not recoginze today but which will emerge as you continue to care for your spouse and yourself.

Jo C.

Hello Treading and a very warm welcome to you.   I am sorry for what you are experiencing.  FTD brings special challenges and as one person shared; having a Loved One (LO) with FTD is like having Alzheimer's on steroids.  I can speak of this as my LO had FTD.

In FTD, unlike Alzheimer's Disease, most persons will retain their memory until the final stage of disease.  This coupled with hugely compromised logic, reasoning and judgment and lack of even an iota of recognizing they have any issue at all, and being very much in the state of being uber impulsive and the "I want it and I want it yesterday," mind set as well as need for control in the moment that is all over the board and also having mood swings and changes in what they want to have or do in a split second of whim, seems to be part of it all for many with FTD.

The impulsivive thoughts, heightened irritability, wants and behaviors are rife and much mischief can be done.  Absolutely no helpfulness in arguing, asking questions, trying to educate or point out; that makes no difference as that will not be processed and will cause the person with FTD to dig their feet in even harder.  In FTD because of the "michief," it is crucial that you move to protect your finances early on.  If you can do that without his knowledge, all the better.  Also, the computer can become a huge issue, so do watch his use of that as much as you can.  We have had spouses who find their LO has done very harmful financial mischief online as well as donating hugely to causes and even seeking out pornography. 

If you have not done so, I think it would be a big positive for you to seek the advice of a certified Elder Law Attorney asap.  That specialty is necessary. This will help you to protect yourself, and your spouse and get things put into place to anticipate and prevent problems.  I learned that the hard way.

Removing those things or interactions that caue the LO to feel irritable or agitated is a good thing.  Routine and structure  in their home setting and daily life suits them best despite their own ongoing changes and impulsivity.  Asking him "why," and trying to reason is counterproductive.  I had to learn to use therapeutic fibs when necessary to get things done and to meet challenges; for some reason, it worked and saved much agitation.

There is the association for FTD that can be found at: https://www.theaftd.org/

The University of San Francisco has a multidisciplinary unit that works with FTD and they are very informative; do Google, UCSF FTD; a lot of information will come up some of it as to how to live with the challenges.  I also found that when I called them, even though I do not live in their area at all, the staff was wonderful in speaking with me.

It would be helpful for you to build a good support team as early as possible.  This would include your primary care MD for ONLY health issues not related to the dementia; and a good dementia specialist as well as family, friends and others.   If you have a church community they too can be of support. Our primary care MDs are awesome at so much but they are not on the cutting edge of dementia management and that can make a difference. especially in such a dementia as FTD which is so complex.

It is hard t o find ways to get respite for ourselves, but I found that if I could only get a short time away it was very helpful.   I would drive to the ocean and just sit and listen to the waves, smell the sea, feel the breeze on my face and watch the gulls play on the air currents; before long, I could feel my shoulders coming down from where they had been up around my ears to their correct anatomical position once again.  Even an hour or two to catch one's breath can be helpful.

Do not think you are not doing enough; you ARE doing all you can. There is no perfection in any of this; just the best you can do under the circumstances with the challenges at hand.

The Alzheimer's Assn. has a 24 Hour Helpline 365 days a year; they can be reached at (800)  272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are good support for the caregiver; have much information and can often assist us with our problem solving.

One day at a time, and read, read, everything you can; get good legal adviee to put things into place, and come here to talk; we truly do understand; we "get it" from personal experience. It was the lovely people here who kept my head above water during the most difficult times.

Do let us know how you are doing, we will be thinking of you and we truly do care,

J.

HSW

Hi Sorry you have to be here.

 I was lucky with the medicine. I basically took over. I bring a drink, open the section he needs to take and when he is done I take it away and say thank you. Maybe you could just take over without asking. If he has a problem, tell him take them and tell him to say yes Mom to try to turn it into a mothering joke. Or say suck it up, yes I am mothering you because I love you.

Yes, you can't question or disagree or say they have forgotten. Doing so will build up their frustration. I only did it before diagnosis to get him to go to the doctor. After diagnosis there was a rough period before the medicine kicked in and he had pain he could not remember the cause of, where I did  confront him to stop dangerous behavior.  Make sure to tell his doctor of the changes in his behavior.

 The tricky part is to lower your expectations and to make sure family and friends do the same. For instance, DH was a mechanic and there came a point in time when when working at a dealership became too stressful, 2010, and again home auto repair and maintenance was too much 2018. He was diagnosed in 2017. DH loved being outside and doing yard work. When he drove over a stump and ruined the rider I took over mowing. When he could no longer weedwack on his own we started taking turns. When he could no longer see that the garbage needed to be taken out, I would ask him to do it because it was collecting on the counter.

Treading_water

Hello Jo! Yes!! It sounds like you know exactly what I’m dealing with and the challenges of FTD. All of that.

Luckily, even before the dementia I handled the finances…he never could remember passwords even before all this. He can’t remember how to log on to the computer any more so he never uses it. He doesn’t have credit cards in his wallet anymore because we had some close scares with losing wallets that even be recognized was of concern. We already have a signed power of attorney and medical POA. I feel like I have the basics covered there. 

One question I’d love to ask is about a care team. I’m really in the dark there. Other than the FTD my DH is very healthy. We see the neurologist every 6 months to get his prescription updated and the psychologist every six months same thing. There isn’t anything to treat at this point but I feel confident if an issue came up I could discuss it with them.

Our primary care we don’t see any more because he was useless when we kept saying something was wrong. He said oh it’s just stress and blew off my concerns. 

Should I look for a primary care who specializes in dementia? Do I need something else? 

Jo C.

Though I fear putting you to sleep and having you fall off your chair, here is a link to a deeper writing I did re FTD back in 2013.  I entered two Posts on that Thread, the second Post has more information.  Link:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147498601

I also forgot to mention, when communicating; another thing I learned the hard way was not to address my LOs words; but instead, to address and validatethe feelings behind the words; and sometimes, even if I had not done anything, to take the blame anyway.  Validation of feelings sometimes stopped the irritation or issue quickly.

"I am so sorry that happened, I would be angry too; let me help you with that . . .   I am so sorry I caused that, I will do better next time . . . How upsetting to have that happen; I would be upset too . . . ."

BUT . . . after validating feelings, next move is to refocus whether on another topic, or "Hey; look out the windown there is a hummingbird!", or some such things, OR "let's go get some coffee and cookies" . . . you get the idea.  Sometimes I had to remove myself from proximity.  I would pretend I was going to the bathroom . . . I would wait five or ten minutes and then re-enter the room speaking briskly with a change in topic . . ."Hey; guess what, Cindy is going to have a baby,"  or; "Guess what, the church is going to have a special activity," or anything else that a, "Hey guess what"  can do.

See you soon,

J.

 

Jo C.

Whoops!  I was Posting same time you were.

Regarding physcians; our primary care MDs as said above, are awesome at so much; but they ar not on the cutting edge of dementia dynamics and treatment; that is not their mileau.

It is best to have the primary only for physicial illness and to have an excellent dementia spccialist for all things dementia.   To not have the specialist can lead to very poor medication management which can cause all sorts of unintended negative consequences.

That would be the best approach.  For us; we had an excellent Neurologist who sees dementia patients as a routine part of his practice and he is excellent; that put us in much better stead especially when the disease progressed.

J.

Buggsroo

Hi Treading Water,

My husband has dementia but I don’t know what kind. 

I handle his pills, just hand them to him, telling to take the round pill (arricept) first, he usually waits to take both his iron pill and multi vitamin. I suppose what I have learned is the day consists of both victories and defeats. I try to go along with him when it doesn’t matter, but do insist on what does.

He gets aggressive at times, calls me a f@#king idiot etc, then next moment is as nice as ever.

I have gotten mental whiplash dealing with his various moods. I am learning to just let things go.

Good luck, I hope things become calmer for you. You are in a safe place. I am so grateful for this forum.

Cynbar

I think the loneliness has been the hardest thing for me to get used to, and that is saying something because there have been so many losses. I have more and more difficulty relating to old friends ---- they just can't get what this caregiving is like unless they have been there, and it's hard to hear about all the fun things they are doing in their early retirement. We had so many plans, saved to be able to enjoy retirement, and now here we are where no one is enjoying anything. I guess I just feel like there is a wall up between me and everyone else in my life, I know they're there but I can't get too close to them. What has saved me has been coming here to these message boards, for the last year or so. Everyone here gets it ---- our struggles are similar in some ways, different in others, but it seems that we are all on the same journey. Some people have great luck with support groups, I haven't yet found a good one for me for a lot of reasons But my advice is to come here often, read the posts even if they don't seem relevant at the moment, get to know the posters through their words and problems ----I think it will make you feel much less alone.

Ed1937

Treading, I just wanted to add my "welcome". Sorry you're going through this, but by now you know you've found a good place to be. No judgments here - only support, which we all need.

Treading_water wrote:

One of the things I’m struggling with is that it seems like there are a lot of things that I won’t know are a problem until it IS a problem. For example…I won’t know he’s no longer safe with knives until he cuts himself. I want to give him as much control as I can while being safe at the same time. I’m not sure of how to sit and wait for problems to pop up if that makes sense. 

You will read about all kinds of problems here, but don't dwell on what might happen. Whatever problem it is, it is not a problem for you until it happens. Don't struggle with it until it actually becomes a problem. If a problem arises, come here for suggestion on dealing with it. In other words, don't go looking for trouble. Many of the things you read about will never happen in your case. One day at a time.

 

Iris L.

Treading_water wrote:

. I’m not sure of how to sit and wait for problems to pop up if that makes sense. 

Read the Safety section on alz.org and in Solutions and read all the safety related threads on both caregiver boards.  It is a good idea to anticipate safety concerns. PWDs lose the ability to think, if "x" then "y."  If the smoke alarm goes off, then what do I do?  They have no idea.  If I cut myself and blood is gushing, then what do I do?  You have to anticipate for things like this.  Don't wait for problems to pop up, dementia-proof your home now. 

 Iris L.

loveskitties

I have noticed on a number of posts where folks have mentioned issues with LO writing checks.  

I was just wondering if it might be possible to "order" checks with an account and routing number of all zeros on them.  Kind of like "play money" for kids.  I know you can order real checks from places other than banks, so maybe they would let an all zeros check be ordered.

Rescue mom

About waiting for problems to pop up….think of it as child-proofing a home. You do all you can to prevent problems or injuries ahead of time, almost always easier than dealing with crisis. There still may be something you did not think about, but you do what you can.

aod326

Hi Treading_Water. You've had some great input already and I only have a couple of small things to add. I had to respond, though, because your profile pic caught me way off guard! You may not be able to tell in my profile pic, because DH's appearance had changed due to dementia, but your husband looks so much like him! Honestly, I had to do a double take. DH was an attorney and wore a suit to work everyday so it was a familiar look.

One thing I discovered that made life easier was to remind myself that he isn't (and sadly never will be), the amazing partner I'd married. If he says he's going to do Y, but you know he'd planned to do X, it would have been normal to be surprised and mention it to him. Now, just accept that he's going to do Y (as long as it's safe), without reference to X. If you question him - out of the most benign of intentions - the only thing that will happen is that frustration will ensue.

Also, in terms of thinking ahead about possible dangers, in my experience it was a delicate balance. What others have said makes total sense, but I did it a little differently. I needed to wait for the right time to, for example, put alarms on the doors, hide the cooking knives, put tape over the locks on internal doors. If I'd done it pre-emptively, he would have gone crazy, because of course he thought he was fine. So I gradually implemented those things, keeping a close eye on his progress. As soon as you see the first instance of a specific issue*, such as the kitchen knives, you act. Don't think he's just having an off day.  (* Except driving - you can't wait for the first issue, because that could be, literally, fatal.)

As you've seen already, there's tons of experience, tips and tricks, and support here - I'm not sure how we would have fared without it. 

3collies

I share this same feeling of loneliness and, for me, a disconnect from friends. I try so hard not to resent hearing about the wonderful trips, pictures and shows.

CStrope

Treading_Water I agree with you, and 3collies also said something I agree with:

I share this same feeling of loneliness and, for me, a disconnect from friends. I try so hard not to resent hearing about the wonderful trips, pictures and shows.

When I tell friends about my DH's Alzheimer's diagnosis, you get a lot of, "we're here for you call any time".  But do they really want you to call?  Seems like it's all a bit hard for them to understand and deal with, they don't seem to reach out like you thought they would.

I deal with the mood swings and attitude all the time too.  In fact, I've been dealing with it for about 4 years.  He was just diagnosed 10/2020.  So for over 3 years, we did not have a diagnosis, he continually said nothing was wrong, and I existed with a man that treated me horribly because of a disease we didn't know he had.  

Traveling down the middle of the road in order to avoid any outbursts or problems is a stressful way to live.  When they say something you don't understand, you have to fake it.  When they're not being nice, you have to ignore it.  When they want you to do something, you have to be one step ahead and figure out what it is they want.  I don't know if anyone that hasn't lived this nightmare can understand what it's like.

Hang in there....reach out on the message board.....and know that we're all in this together, just separately!

Treading_water

I often get kind friends asking how DH is doing but it’s so clear they only want to hear “fine” and move on. If I answer that question with anything close to honestly the whole conversation gets uncomfortable and awkward. I’ve gotten to the point I just say fine or one day at a time and keep to myself. I think the intent to ask is a kind and loving one but the reality of hearing the real answer is just too much. 

Treading_water

Thank you so much for the really good advice. 

You make a good point and I hadn’t thought of it that way before. He isn’t the same person and Ive been interacting with him as if he were. He looks the same but he’s not him. (Wow I hate admitting that) It’s lead to frustration for both of us. I think one thing I’ve been doing is trying to use logic where none exists and yes…expecting him to be him. When he really isn’t any more.

Jude4037

I’m lost. You are not alone. I’m lost too.  My husband has disappeared and I miss him. There is a man here but he is like your husband and meets every questions with anger. At first it was just repeat repeat repeat and I thought I can handle this. It’s sooooo annoying but he still had much of his personality so it was fine. But after seven years only on rare occasions does he make comments or jokes that shows he is still in there. I never tell him to take his pills or he won’t. I tell him that his pills are in the ramekin on the counter. He almost always takes them within a few minutes. If he doesn’t I say are these your pills. It works for us for now. My husband was daily packing to leave because he did not recognize our home so I printed up signs and put them various places in the house and it has slowed that down for now. I guess we all learn little tricks to avoid the anger and sometimes it comes anyway. Most know ,”not remembering “ is the Hallmark sign of dementia but as we learn it’s the easy part. It’s the personality changes that really hurt. Not everyone experiences the anger and how I envy them. I’ve been told to leave , he wants a divorce , shoved out and locked out. Often  I do leave for a while and come back and ask if I can come in. The answer is sometimes yes, not always. I never go far , generally park where I can see the house. And I’m fortunate I have a son close by who will come over and often that seems to break the spell. AD manifests in different ways and none of them are welcomed. 

Hang in there and know all you can do is the best you can at that moment. And if you fail and snap back he’ll not remember it in a few minutes. I used to feel really bad if I reacted negatively thinking “he deserves better” and he does but so do I. We’re both doing our best and some days it’s not pretty. 

DrinaJGB

I read a few years back that the sort of grief when caring for a loved one with dementia is referred to as frozen. That is, you cannot move forward toward any sort of resolution because the source of your grief is sitting right there in the same house with you. You as a caregiver need to awaken daily and get on with the tasks that include daily maintenance of house and home and finances and giving care to your loved one who may or may not know you any longer. It is a constant reminder of what has been lost, and yet you feel there is nobody who understands what you are feeling. I get that. I no longer express myself to anyone about my feelings because it is just too painful and I realized years ago that people cannot relate.

I have been sole caregiver to my DH for 11 years since he had a near-fatal and rare form of encephalitis in the form of a viral invasion of his once-brilliant brain. He was in ICU on life support for a month and in hospitals for four. He came home a totally different person; a complete stranger, and through all these years I have come to realize that I am no longer the person I used to be either.

For the first four years I was also caregiver to my beloved father who was in heart failure, so I was running myself ragged between two cities caring for both my DH and my father. Right before my DH lapsed into a coma and was placed in ICU on life support my brother was lying in a coma on life support in another ICU. He did not survive, and that broke my father's heart as well as mine. He was my only sibling. And then as fate would deem it I found myself once again in another ICU with my DH on life support only weeks after my brother died. There was no time to grieve my brother as my life had been completely turned upside down.

It's the loneliness that creeps in from time to time that wears you down. I try so hard to distract myself and thanks to my two dogs and love of gardening that is how I cope. Distraction is a big help.

What I miss the most is having the conversations we used to have. It's that one thing that brings up that grief the most. I miss that person on my life who got me; who knew me more than anyone else; who always had my back no matter what; who told the jokes, and could figure out a solution to any problem. That's what continues to remind me of what's really been lost forever.

storycrafter

Oh! Perfect title! Thank you for your post and sharing your feelings/thoughts. It helps everyone, especially me, to read it in your words. It helps in processing and accepting the reality of it and somehow eases the burden to know I'm not alone.

I relate completely with all you've said. My husband was diagnosed with FTD (behavioral) in 2015. It took many, many painful years to reach that point of diagnosis. I knew something was wrong in the mid 2000's, subtle changes in his thinking and behavior that were obvious alarm bells to me. His testing with multiple specialists began in 2007. He has a slow-progression version of Fronto Tempororal Degeneration.

So I have some experience living with the unknowns, the uncertainties, the myriad puzzles along this baffling road of neurological illness. One thing to know is ... it's impossible to reconcile, just like it's a futile battle to attempt to reason with someone who has Alzheimer's. We've run into a brick wall and must turn and go a different direction, or be crushed where we stand.

It's an ever evolving journey and is a continuous work of integration and recalibration every day. No one can sustain the energy and effort this requires for very long on their own. Thus, the gift of support groups like this one is a saving grace. Like others have said, the wisdom, insight, and experience found here provides priceless strength and courage that is found nowhere else.

(Please bear with me if what I say sounds cheesy. I must beg your pardon because I'm currently going through a time of intensified losses and challenges and my feelings are on my sleeve.) Hang in there with us. You may not find the answers you want, but you can find what you need. Keep looking and reaching out and it will come. You now have a lot of fellow pilgrims walking beside you cheering you on through thick and thin. We are all so lost. At the same time, together we're now "found."

jfkoc

We do know how you feel. It is like standing on quicksand. 

There are some general tip to pay attention to;

no questions, limit choices, no reasoning, no arguing and simplify every thing. You have a husband who has a brain that has changed. He is not coming back. He is not going to be on your page. You must be on his.

Those tips will make the road easier but they will not help with the grief. They will, however, stand a chance of helping with the lonliness.

There is nothing likable about losing a spouse which is exactly what  is happening. However you may find as I and others here have, that your new relationship is very deep. It is a different bond.

Please come here and share with us and we willin return share our journey with you.

Treading_water

This made me cry. Yes. So much that. The person who knew me better than anyone..the one person I could say anything to no matter what..who understood. That person..my person…is gone. I’m having a hard time dealing with that especially since this new person looks just like him.