Today I’ve just about had it. I’m physically and mentally wrecked from dealing with mom and her condition. Her behavior is so draining, it literally sucks the life out of me. And yet, I feel guilty for having these thoughts because she is the one with the illness. Though I don’t actively take care of her, I do think the fact that she has had this disease for such a long span of time, has worn me out. I do believe for the first time in my life I’m going to need counseling.
She has the frontal-lobe personality changes - that is absolutely the hardest thing to deal with. She is constantly telling me how she has to “whip up some tears” to get anyone to do anything. She harangs me endlessly on the phone at the slightest little inconvenience to her day, (and when I capitulate to her endless demands then she criticizes the results - like the electric chair I got her wasn’t right, so I got her a brand new one that is also not “right” - and really it’s the disease progression as to why things aren’t “right”), she has taken it upon herself to get involved with the other patients’ issues (and it’s not like she has made any friends with any of the aids that care for her day in and day out - she complains to them constantly about her care and then throws in the care issues with other residents for good measure).
I know I’m being vague, but to detail it more specifically would just be even more exhausting. She is incredibly manipulative and extremely self-centered at this point in her disease progression. She honestly believes if people just did everything exactly the way she demands - then she would get better. The aids have told me that her bitterness and nastiness have them avoiding her like the plague - even though they shouldn’t be telling me such things, I totally understand their feelings. Her stubborness to stay here on earth is just heartbreakingly miserable for all of us at this point.
She was the best mom ever until this disease took over and I keep trying to remind myself of all the good things she did for me over the years - but I’m starting to suffer greatly from the stress to the point I’m worried about my own longevity (my sister died in less than a year of caring for her). I wish she had some form of faith: in her daily living, in those that care for her, and for the transitions to her next state. I’ll probably delete this message after posting as I just need to vent - but seriously nobody has any idea what it’s like to deal with these issues, year after year - except for folks here.
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Ettavb
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I have not much to offer but both empathy and sympathy. I care for my husband . He does not speak, which is very hard for us, but maybe we are also a little bit lucky. Although I believe there are some personality changes, they are harder to see in him.
I also agree that as the years dealing with the disease go by, it can’t help but wear you down. It just has a way of making life so hard.
It sounds like you have an amazing mom. I hope you can find a way focus on that part of her. She’s still there, just harder to see. It must be so hard to want to love and support your sweet mom when you don’t see the mom you know and love. I hope better days are coming . Hang in there. 👊
Yes, mom was amazing... and the fall of who she was has been equally amazing... but thank you for the reply; I do need to remember to fight to still see that core person... I do see it sometimes. Thank you for your reply.
I also sympathize with you deeply. If there is one thing I wish we had more of from our physicians, it is how to deal with front-temporal lobe symptoms. Our friend Kevin, who understands psychiatric care will likely have some advice - it's one of the areas I "flounder" in. I am such a one for "logic" and reasoning...and that's just not going to work here, is it?
One thing my sister pushed me to do when I was struggling and exhausted caring for hubby (who really didn't have FTD symptoms - just the self-centredness and lack of communication..and no sleep) was to find a way to "separate" in my emotions from him. I was shocked she would suggest that, but she was dealing with a Mother in Law who did have such symptoms. She tried to create emotional distance from MIL but still act lovingly and responsibly. I could understand the logic - didn't know if it was possible for me to actually "do it", but she argued the same thing: do it, or you're going to get sick too.
Thank you for your reply Anne, you have a really good suggestion about the separation. You and I've shared previously our similar personalities in being logical in our way of dealing with the world... so this may be a challenge for me, but it at least gives me something I can sort of visualize that I can attempt.
I'm writing as a frontal lobe carer fail. There is a little humour in that statement. These sorts of behavioural issues take caring into another dimension.
First there is the practical care demands which are high.
Add the emotional trauma of someone you love being incessantly horrible to you.
Then add the constancy of demands which can be unreasonable and sometimes feel persecutory as well as exhausting.
We all have our limits and it would take someone with the skin of a Rhino and the heart of a saint to manage this sort of care endlessly.
You describe it so well in your post.
I found mentioning these issues to the professionals hopeless. It merely resulted in them looking at me as if there was something wrong with me! My wife was so sweet an well behaved in front of them.
My wife was more passive aggressive. As if thinking up reasonable things every five minutes to keep me on the go. I became very good at predicting events!
I tried every approach I knew. I started off with CBT based interventions and went all the way through to basic behavioural interventions of the kind: If you are hostile I will tell you and then withdraw for five minutes. (Only if it is safe to do so and it won't cause suffering). The last approach had some immediate effect, but given the limitations of learning little lasting improvement. Used gently and with expressed love it does protect you and can change the immediate interaction.
Another approach which sometimes worked was to give my wife a hug and change the scenario completely. It sometimes worked.
The issue is the fixedness of the frontal lobe thinking /behaviour and the reduced ability to learn.
On a really good day I would recap, with her, the 'nasty' presentation that had just taken place. What she did how I responded, what happened next... deconstructing it for her and she would get it. Mostly she would look confused. The issue is that social perception can get knocked off too. So it was not so effective.
One day she reported to a carer that I had hit her (not true) I telephoned the social services myself and reported it as a Safeguarding issue. Quite a hard thing to do as I intended to get her placed in a nursing home. Worse I was trained as a Safeguarding Investigator! I was caring beyond my emotional limits and just could not handle not knowing when she would 'hit the red button' again. This was the fifth event over the years if I include her telephone calls to the police, one where she complained I wasn't meeting her care needs. i.e. I wouldn't get her up and dressed because she was a bomb waiting to go off and had asked her to have a lazy day in bed watching T.V.
For the sake of us both eventually I had to call 'game over' and seek a nursing home placement.
FWIW the investigation came up with "no safeguarding issue", but it had the desired effect that she had been placed in a nursing home and they agreed to continue the placement.
So... Things that enabled me to keep caring in the face of it? As much personal and extra care support as I could get.
Things I didn't do which would have helped:
Spending time with friends (I had none around we had moved house just before the diagnosis)
Time out of the home. I was too exhausted and if we had a carer sitting I would take time on my own to try and relax... but on the whole I was too distracted.
Make of this what you might. Your situation may well be different. FTD type issues seem to be largely avoided both by professionals and even the Associations.
It was along and painful road and it's not over yet.
The home manages her bad times very well. I see her almost daily and bring her home for three afternoons a week. If she is in one of her 'hostile spaces' I just don't bring her home, or I leave early. We are now enjoying much better times together.
I am not saying, 'put her in a home', but just that you should look after yourself and be aware that you have limits as we all do. Going beyond them for too long is not good for either of you.
Oh my gosh Kevin, what you detail nearly duplicates my experience. I didn't have mom directly accuse me of something... but she has told people (my sister actually, which set up a really odd family dynamic) that I wasn't to be trusted. My sister had her own mental health issues and was easily manipulated... there was collusion not to tell me important things. That ended with my sister's passing, but then mom didn't want a funeral for my sister because she didn't want to see any of her family members (she didn't want them "gloating" over her loss -- as she so oddly put it)... she made the statement that her older sister tried to kill her one time (news to all of us -- and something I didn't want to mention to my aunt who is very elderly herself at this time) and that she forbade her from coming to the funeral. In order to work around all the dynamics at play I came up with having a memorial (to avoid the funeral), and convinced my mother to at least let her siblings attend. I had to tell the greater family, cousins, etc. that they couldn't come... and since that time, I think my relationships with the extended family have soured as I believe they think I must be heartless (at the least, they are certainly confused about not being allowed to come and support us and grieve the loss of their cousin) -- I tried my best to tell them that these were mother's wishes -- unreasonable as they were and that it took all I had in me just to convince her to let her siblings come and grieve. I won't even mention how hard it was for me to grieve my sister without having the greater support of the family -- for my own grief process.
Mom is in a care facility (she left me a mess of a business that she wouldn't let go of in her advanced stages of this disease even though I begged her to "retire" the business, and I also had my sister's estate), I couldn't handle it all. I'm grateful that she has the financial resources for her facility -- that may be the only bright spot for me in all of this. I can at least walk away when I need to and know that she is still safe and basic needs are being cared for.
I love your suggestions... I have done the hug thing too (and am often met with a recoiling... ), and I have walked out on her when she has been particularly nasty and said -- I'm leaving now... I will be back in a bit. My husband says I'm a saint and that I've handled my mother and the situation beautifully and thoughtfully for many many years... but it leaves little time for me to have a life with my husband, my family (I have two young adult sons).
So I know your heartache Kevin, I wish I didn't. And I too live apprehensively for the day Mom will say something that isn't true that could be very damaging... she can be very sweet and believable to people who either don't know she has frontal lobe dementia, or who don't really understand what it is and it's expression. And I do get your humor... I used to be a rather funny person myself -- humor has gotten me through a lot, but this... not even.
Yes, as I read your post it was so close to my experience, excepting that Liz would have really warm loving days too.
Don't be too anxious about her making accusations. Just make sure those caring for her are aware of that history.
I felt reasonably safe with the Safeguarding and Police episodes because I know the process and law and also the lack of evidence. Liz would always be remorseful afterwards and say, "Why did I say that?" Gruelling though! Yet the authorities never really got on board with the FTD. So many medical folk often don't get the psychiatric stuff. The number of times I was called out to medical wards to sort out basic stuff was quite surprising (When I was working).
As long as those caring for her are aware of the situation I imagine you will be OK.
It does sound like you have a huge amount on your plate. I do hope you are getting as much support as possible.
Yes, I'm sorry to say it goes with the turf. Many in my family just don't get it or can't handle it. I have a very small family now. But that's easier than having folk around me who try to avoid subject or get uncomfortable about it.
Oh, and thanks for your feedback on the benefit of outside professional help... I'm afraid that if I don't find the right therapist (and really, who has time for this when so many other things are being left undone) who understands frontal lobe disease issues... they may not be able to help me... because it is all such a paradox. Yes, being around my mother is very toxic to me (sometimes I do better than others -- but it's the build up of years of it), but there is a reason for her toxicity... and she doesn't do it on purpose, it's the disease.... but how does one protect themselves in light of this knowledge anyway? It still effects me greatly. You nailed it with this statement: "The issue is the fixedness of the frontal lobe thinking /behaviour and the reduced ability to learn."
Your description of Liz’s behaviour strikes a sad familiarity with our situation and I am sure many others.
What I find so bizarre is that the medical profession - choose to ignore this. When I have tried to discreetly raise concerns at Neuro appts mindful my husband is present the Neurologist just nods and moves on!!! Not a physical symptom and not text book so often is not even mentioned in clinic letters wonder if they ever actually record in medical notes even !!
Tippy you have taken the words right out of my mouth. All I would have added is the 'knowing smile' with no advice from the medical people and the clinic letter to GP saying R remains stable - aargh!!!! So on we go, digging ourselves out of the depths of despair until the next episode. HilsandR
As ever Kevin you describe this particular issue so well.
This drives me crazy that I'm doing everything I can for Mum but she just throws it back in my face over and over again. I'm always the bad person.
I have no other family but she does have a long term partner who is a selfish bleep who swans in and out (lives abroad) who she thinks is totally amazing.
With everyone else she is sweetness and light and I think they think I make it up.
As you say it is an area that isn't really understood or wanted to get involved in by professionals. You just get a nod or "really she seems so lovely"
As you know, I got a lot of that sort of behaviour and I have said what it did to me emotionally too.
After a while I began to doubt my perceptions. Gradually I came to think there was something wrong with me. I lost confidence in myself and became somewhat of an emotional wreck. On bad days (which once seemed to last six months) I would wake up and my anxiety would rocket (facing another horrible day) and I would have to really motivate myself to do what was needed. Many years working in community mental health dealing with horrendous illnesses and life stories, going out into dangerous situations (facing knives and guns or just very big out of control violent people), none of that came even close to this level of stress and struggle.
TH double whammy of these illnesses is that the carer often has to adjust to a major life style change, a major relationship change as well as doing the care on top. It's a tall order.
Burn out is a real danger. I didn't reach dysfunctional burn out, but I came very close.
Things I could have done better?
Use the exercise bike we have. I am now gradually rebuilding a level of fitness which got wrecked doing caring.
For most outside family time would be good, but like you I don't have much easy access to that.
Time with others, for most folk, but I have always been a loner.
Walks in the countryside... That would have helped me a lot, but I got so ground down I would use my 1/2 day respite either gardening or sitting in my room trying to relaxabd thankfull for a space which does not get interrupted every 5-10 minutes.
I hope there is something of use here for you.
Gradually I am trying to rebuild myself... Its going to take some years.
I’m at the point where I’m facing this is well — just trying to pick up the pieces and put myself back together again. I seriously do not want to see anyone for many reasons including that there’s no way they would understand (though I’ve tried to convey it). I’ve had many people say to me that they too have lost a close loved one, but they really don’t understand the unique dynamics at play in this strange situation. (And nobody I know has been left all alone to deal with their sister’s estate (she was single but owned 3 houses), their mother’s estate and their mother’s fully active business, not to mention her health care issues for a strange, uncommon disease — and all at the same time.) I’ve moved the content of three households and sold four houses in the past year and a half. It has wrecked me physically and emotionally. I’ve put on way too much weight (of course this only adds to the struggle - takes me so much longer to do things I used to breeze through) and yet I’m not motivated to do what I need to do to turn it around. As a result, I really don’t want to see anyone because it just reinforces the negative view I have of my state of being at this point. And it’s not that the people I do know would ever judge me - it’s just that I want to bring my old self to the table and be the person I used to be, and when I can’t... it just reinforces the current sorry state of affairs. I don’t know what’s going to change it around except time and I’ve started to take the long view, inch by inch at this point - hoping that the gains will start to increase over time.
I can so relate to what you are saying about people not getting it. I too prefer my own company rather than dealing with others difficulties in either graping it or ther efforts to ignore the heard of elephants in the room.
Inch by inch is progress.
Wishing you the best with it...No easy, but doable.
I got that last week from one of the aids (saying that my mom was so sweet) - ironically one of the ones mom was complaining about to me just moments prior. It’s no wonder that you start to doubt your sanity when you hear two completely different takes on the same situation - makes you wonder if it’s even the same story!
Dealing with a “you don’t meet my needs” type of personality is a no win situation. I’ve know several people like that. What ever you do it won’t be right or acceptable. It’s a great way to control people who try to accommodate you.
You are doing what you can do. She isn’t going to change. Time to make yourself a priority.
It sounds like you're doing the best you can in a bad situation. You definitely need a break from the grind though. Maybe a small "white lie" that you are leaving town for a few days and won't be reachable by phone would help you get some downtime and rest. If you live at the same residence book a hotel room someplace nice for a few days or possibly a Bed & Breakfast place. Just let the carers know you'll answer any calls they have but ignore the ones from you mom. I know it may sound a bit cold-hearted but you need to look after yourself as much as your mom needs looking after.....
Honestly I don't think I've ever considered that... and the truth is... she'd be OK if I didn't come running at her every beck and call. The emergencies last week included getting replacement tweezers, more pants and to call and harass the people taking a look at her electric chair (they've said nothing is wrong with it). None of that was an emergency or even remotely affected her ability to get through the week - she has a back up wheelchair, she has pants, and though personal grooming is nice -- it's not a necessity (I should know, I haven't worn make-up or jewelry or even anything other than a t-shirt in over a year -- I haven't had time. She at least goes to the salon twice a week in her facility -- I haven't been to one in 5 years.) So thank you, if nothing else allowing me the possibility to step away a bit.
Oh this sounds familiar, please can you come round now, it sounds so urgent & then when you get there it is nothing important & in my Mum's case she may even have forgotten what it was. I have got better at questioning & establishing whether it is a health & safety issue before dashing over but I find it hard & feel mean about it.
If you can get a break, if it means paying for extra care, I am sure you will feel the benefit. I had had one day off in 18 months (that was for Mum's brother's funeral) and was really struggling, so much so I couldn't see how to take time off. One of Mum's carers persuaded me to book some time & also told Mum I needed it. My husband & I had 4 nights away in May, extra care was arranged, the manager of the sheltered housing where Mum lives knew & popped in to see Mum everyday, I think she actually enjoyed the break, maybe things had got too intense for her as well. I certainly felt so much better and continue to do so.
Hang in there Etta! These conditions are enough to test the patience of a Saint!
Can you arrange a respite break for yourself, go spend time where she can't phone you, where you will be totally distracted from thinking about her and worrying if she is upset that she can't get hold of you! Go see your doctor and ask for something to reduce the effects of your stress! You sound like you need it! Talk to a friend, or come back here and rant again. We understand and know how stressful the carer's job is!
Thank you for the support, I really need it now and it's hard to find since my family is pretty much reduced now to just my husband (who thankfully does understand what's going on - but he has his limits too).
Wow, just wow... I logged on this morning to delete my post and I'm so glad now that I didn't last night... as there was so much support and some really good ideas for me to try - I can't thank you all enough.
I am so glad you didn’t delete your post! So many of us can relate to your challenges and it is helpful to hear how others manage these challenges so hopefully a cathartic off load for you but the chance for all of us to learn from each and look at the strategies we implement again.
I'm pleased you didn't delete your post too. It seems a bit wrong to be glad to hear others are going through a similar situation (if you know what I mean. Not glad. Just reassured). It's so tough - I know what you're going through. And draining. With mixed emotions on a daily basis.
Stay strong and look after yourself. Take time for yourself - and your husband.
Incorporating all the really great advice given here, and really thinking about that metaphorical separation that raincitygirl suggested -- I've come up with a mantra that I think will help me.
There have been many times when I've felt that my mother thinks if she's going down, then I'm going down too... almost to the point where I believe that (again, happened to my sister). Just last week she demanded I stay while they changed her briefs (I was getting ready to leave after a long visit). She told me and everyone in the room that she wanted me to see the humiliation she went through. I told her I've seen it many a times in the past 3 years, including the fact that I've changed her briefs myself. It was the look in her eye, like a scolded kid in total disagreement with the authoritarianism of it all.
And since I've expressed I wish she had some sort of faith to rely on to carry her to find self-solace in -- I've decided to express to her, when relevant, that I'm not going on (can't go on) this journey with her. Even if she doesn't absorb it, or even respond to it - at least it's a way of space placing for me... a reminder to me. I feel that this is a new tool, it helps affirm the separation needed for me to survive this - both figuratively and literally, and without being hurtful (hopefully) or untruthful to her. Even if I don't say it to her, I can say the affirmation to myself silently when I find myself in the next trying circumstance with her.
Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
From my experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are advisable.
Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Yes to all you stated about the dynamics of being a caregiver - and the fact that we are aging ourselves while trying to live our life and assume the life (in terms of responsibilities) of our loved one.
Hi Etta, your phrasing of 'draining and sucks the life out of you' just about sums it up for most of us on this site. Your lovely mum has not changed, it's the enemy within that is making her behave the way she is. My husband was the kindest, gentlest, funniest, caring man ever but I don't know him now, which is heartbreaking. I do so sympathise but for all of us in the same boat, when we reach the end of our the tether it's a warning sign to take a break. Putting your mum's needs before your own is the sign of a very loving daughter but time now to balance your needs with those of your mum. Time now to take the energy out of a stressful situation and put it into finding a break. Your mum is being cared for so go away for a bit and take care of yourself and recharge your batteries. I hope you come back soon and tell us you have had some time for you and that you are feeling more on top of things. We've all been there, believe me, but once you are able to accept the situation, many find they can strike a balance without too much guilt. Very best wishes to you, it's a hell of a journey. Hils.
Good Morning, I can sympathize with you, as will most others on this site. I took care of my hubby, Leon, for over 8 years, before finally having to put him into care, where I went up to 8 hours daily to still care for him as the nursing homes are so under staffed. It was truly exhausting, I did not see it until some of the carers that came to help me shower Leon put in a report that I had Carers Fatique, he was in care for 4 months before passing to a better world on 16.6.2018. He too had horrid outbursts, he was continually accusing me of having affairs, although I knew it was the illness and not him, it was emotionally draining. I just had to remind myself constantly that it was this wretched P.S.P. and not Leon. Hang in there, massive hugs and thoughts to you and your family at this terrible time in your life. xxxooo
As tough as it gets, you need to always remind yourself that she has PSP. That said, you need time for yourself as well. My mum passed this year from PSP. I was her full time caregiver for 6 years. When things became too much for me I had a regular daily schedule M-F with private pay caregivers to assist (two people needed to some of the chores), and siblings who came weekends. Yes, it was exhausting and affected my own health. But my mum was humble, never complained. However trite this may sound, my blessed mother was a saint. She reaped what she sowed in her life, which was being a loving mother and person. It made caring for her a natural return of the love she gave us. I could not put myself to consider a nursing home with the mere thought of her alone for even one hour, or in need of simply getting a toilet change! Now that she is gone months later I'm still in deep grief, despair. But I'm calm in knowing that I did my duty.
Counseling is not a bad idea but can be expensive - and there good and bad counselors.
I have walked that path and I think I should have saved my money. I watched my counselor fall apart when she was dealing with far less trauma drama than I was.
I found more comfort in good educational Brain books. The Brain is a marvelous part of each of us. And what I learned is when the brain is damaged the mouth can become HORRID.
Please try not to take the mean words to heart.
I used to make many short visits to the nursing home to visit my mom and if she was having a good day I would stay longer. This worked for me.
Truth is no one knows how to deal with every situation - we just do the best we can at the time with the knowledge we have. This is a good learning place - I am so glad you found it. Sending you and your mom BIG HUGS - Granni B
Well I left you a long reply but I don’t see it / it must’ve disappeared into the Internet thin air! A nyway, I totally agree with you and I’ve come to the conclusion that a counselor is probably not going to work for me at this time.
Personally I have gotten more useful information on this site - I guess because folks on this site have a true understanding of the frustrations of dealing with PSP. Plus they share what has worked or not worked for them.
Isn't there an old saying about walk a mile in my shoes . . .
Ettavb, I am sorry for the loss of your sister . . . You have had a lot to deal with!
When my world was swimming in dodo . . . I made a list of 20 things I enjoyed doing (I was such a mess at the time it took me awhile to come up with 20). Mine were simple and cheap - walk the dog - play with a kitten - fly a kite - coffee with a friend - Then I made myself a promise to do one of the item each day. I also made myself eat healthy and exercise . . .
Please take care of yourself - Sending you hugs - Granni B
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why don't people understand a carer can be tired? 
Just having a word with myself
Any idea what’s going on? 
