Tearing my hair out

[Weasell]

First let me say how sorry I am to hear about your health, to care for someone else when you are in pain must be terrible.
Dementia sufferers are sometimes compared to children, but their care is so different, a child is on a learning curve, so being firm with them is a beginning of teaching them boundary’s, and is an investment of your time.
I find being firm, cross or trying to ‘educate’ a dementia sufferer a complete waste of time. So the challenge is to be upbeat, calm and say things like ‘ that’s not a problem’ or don’t worry we can sort that out in a jiffy! Surely the measure of success is to create happiness if you can?
How I achieve this and keep sane is slightly unconventional. I have an invisible parrot on my shoulder. While I am saying out loud ‘ you can’t make an omelette without breaking eggs, so let’s not worry’! the parrot has plenty to say on the subject, it can be very funny and has a foul mouth on occasion! it is very fortunate it can only be heard by me!
Does this sound crazy? I really think it helps me?

 

[Roseleigh]

And now I am waiting for a hip replacement and am in a lot of pain and only comfortable when in bed, but I am trying to be kind and cheerful always.

I don't think in your condition you should be 'caring' for someone else at all. As a carer you should be moved right up the waiting list for surgery, which it would be worth speaking to your GP about. Also how about arranging respite care for your husband in a CH, both now and post surgery as it will take some time for you to return to full mobility post op? You may even benefit from some respite care yourself! Have you had a needs assessment for your husband and self?

 

[Donkeyshere]

First let me say how sorry I am to hear about your health, to care for someone else when you are in pain must be terrible.
Dementia sufferers are sometimes compared to children, but their care is so different, a child is on a learning curve, so being firm with them is a beginning of teaching them boundary’s, and is an investment of your time.
I find being firm, cross or trying to ‘educate’ a dementia sufferer a complete waste of time. So the challenge is to be upbeat, calm and say things like ‘ that’s not a problem’ or don’t worry we can sort that out in a jiffy! Surely the measure of success is to create happiness if you can?
How I achieve this and keep sane is slightly unconventional. I have an invisible parrot on my shoulder. While I am saying out loud ‘ you can’t make an omelette without breaking eggs, so let’s not worry’! the parrot has plenty to say on the subject, it can be very funny and has a foul mouth on occasion! it is very fortunate it can only be heard by me!
Does this sound crazy? I really think it helps me?

I'm loving the parrot on the shoulder - I think I may adopt him/her as well if thats ok!!! I found it hard to become "bossy" as its my MIL I look after so I had to step over the line of respect and just get on with it. I see others using the "flappy thing" as a distraction I've used that myself - especially viable at the moment with the wind and leaves!

 

[PalSal]

I have only been a member here for a couple of years but have read many posts like this. The carer doesn't ever want to mention the 'D' word and doesn't want to be bossy. A post is then made when the forum member is struggling with a truculent partner/parent/grandparent. My following comment won't sit easy with many/most of the membership.

Your post states that you don't want to be bossy but that you want to manage the situation. I think that managing a situation means being the boss. When my wife was diagnosed the diagnosis was delivered in a cold and blunt fashion and she was shocked by the manner of the delivery. I take my cue from my wife's Consultant and am not afraid to mention the 'D' word or discuss the implications of that diagnosis when my wife asks questions.

A couple of years back my wife, in a fit of pique, announced that she could manage h@er own medication. I let her get on with it but within 24hrs she had missed doses and then double dosed. I pointed this out and took back control. She has never mentioned medication again. I take the same attitude with all aspects of life and let my wife try things, with me stepping in if life, limb or property are put at risk. I always point out why I'm taking control and let her know that I will let her assist me to the level that I deem safe for both of us and our home.

I am bossy and I discuss dementia with my wife(although I'm as positive as I can be on that score).

My attitude doesn't stop the progression of dementia and nor does it make life easy for me. As many of you know, I quit as a volunteer host here several months ago because I was at crisis point and had to concentrate on my caring role. What my attitude does do is make it easier for me to call upon Social Services and get them and my wife on board with assistance for me. Things are still difficult but I do have help.

My basic thought is why should anyone be surprised if their loved one thinks there is nothing wrong and that they still do everything for themselves if they have never been told any different or controlled to the extent that is required for their own safety and the safety of others.

This is how I operate and I know that it may not work for everyone but I just thought I'd put it out there as I noticed that your post had been read a few dozen times but had not received any replies.

I wish you the strength you will need for the future - it's very hard.

@karaokePete I am with Pete on this. We have always discussed the disease openly and called it by its name. As the disease progresses more and more is required of the carer....no cure and only systematic meds. Like Pete, I have taken over more and more tasks over my 17 years as a carer. I have survived by getting outside help and support ....and being bossy. (and sometimes demanding I spend a significant portion of time managing our life together, and trying to be one step ahead of his requirements...The disease is not going to get better so one must continue to take on responsibility for AD patient or relinquish their care to an institution, .Relinquishing the care of my husband is something I am planning for at some point in time....I accept that eventually I will no longer be able to keep him at home...for today it still works.

 

[Lyd]

I care for my MIL. I think what works depends on where they are up to in relation to dementia. I am bossy about medication (she gets a weekly dosset box and can make it work as long as she always starts monday and never has overlapping weeks, if she does she takes both with the same day). We had a discussion about expired food not being expired (the month had changed so the 27th was ages away) which went nowhere but when I just replaced them she didnt even notice (this wouldnt have been possible a month or two ago though she would have gone balistic! but then the conversation might have). Other things which are not dangerous we led her lead.
Ideas:
I am a big fan of having some space/exiting to calm down. The beautiful thing about her having dementia is that she forgets and you can start again (she used to hold a gruge forever!).
Also writing down self care teachiques that work for you and using them when your feeling stressed, I know someone who bakes to feel better but everyone is different.
Finally which no one has mentioned I use, mindfulness and acceptance techniques which are all about managing your thoughts and feelings about situations (its quite faddy at the moment so theres loads online) and great for situations in which you have limited control. Mindfulness is about being present focused so you can practice it in the company of someone with dementia and they benefit too.
Hope this is helpful... best of luck x

 

[Vic10]

I’m following this thread with interest, knowing much advise is the right thing.
I have always considered myself a strong person, I held a senior role in business all my working life, I had to be decisive and tough.
However, since my OH went through the stage of argument / verbal abuse/ hyper sexuality I find that I actively avoid confrontation.
I recognise the need to be bossy and I have to take control. Medication has calmed my OH now so I need to get a grip.
Thank you for your thoughts on being bossy it’s made me rethink my role and what I need to do. Now I need to be braver.

 

[jaymor]

Like everyone else who becomes a Carer I morphed into the one who did everything. I tried as hard as I could to let my husband do everything he thought he could do though I knew he couldn’t. As long as no one could be harmed I was fine with it. Washing up with hand wash and cold water was easily sorted by putting into the dish washer when he left the kitchen. When he tried to cook and it was getting a bit dangerous I’d flick the switch and say we had a power cut. A quick telephone call (without dealing the number) to the electricity company to report the ‘ power cut ‘ and making sure-he heard my conversation dealt with that. As soon as we had moved on to something and the cooking was forgotten a quick flick of the switch and it was sorted.

Trying to keep us equal as a couple was hard and times when I wanted to scream, and I did, always out of hearing and sometimes a few rude gestures were used behind a closed door. I knew I was in charge I just hope he never felt I was ‘ The Boss ‘.

 

[Grahamstown]

I have to agree with many of the posts here. I have to instruct my husband in everything he does because otherwise he would do nothing. He would sit in his pyjamas, never wash, shave or eat so I have help three times a week for that. The only thing he does spontaneously is to make a cup of tea if I am not there, otherwise he expects me to get it. He would survive on tea alone and even then would not drink it unless I prompt him. Today for example, I got up after him, a rare occurrence, and he was sitting in his chair in his pyjamas with a cup of tea, looking at his iPad. Yesterday he did not get up until late morning, wouldn’t get dressed until 4pm which is when he‘wakes up’. He wouldn’t eat anything if I didn’t put it in front of him and even then it’s difficult. Every day is different but from yesterday and the dietician’s visit, I only offer him the foods he will eat and little and often. I won’t be putting a normal meal in front of him now.

 

[Bunpoots]

First let me say how sorry I am to hear about your health, to care for someone else when you are in pain must be terrible.
Dementia sufferers are sometimes compared to children, but their care is so different, a child is on a learning curve, so being firm with them is a beginning of teaching them boundary’s, and is an investment of your time.
I find being firm, cross or trying to ‘educate’ a dementia sufferer a complete waste of time. So the challenge is to be upbeat, calm and say things like ‘ that’s not a problem’ or don’t worry we can sort that out in a jiffy! Surely the measure of success is to create happiness if you can?
How I achieve this and keep sane is slightly unconventional. I have an invisible parrot on my shoulder. While I am saying out loud ‘ you can’t make an omelette without breaking eggs, so let’s not worry’! the parrot has plenty to say on the subject, it can be very funny and has a foul mouth on occasion! it is very fortunate it can only be heard by me!
Does this sound crazy? I really think it helps me?

I like your style

 

[Roseleigh]

Medication has calmed my OH now so I need to get a grip.

May I ask what meds he's on as my OH is being very difficult and having frequent psychotic and abusive episodes?

 

[DesperateofDevon]

First let me say how sorry I am to hear about your health, to care for someone else when you are in pain must be terrible.
Dementia sufferers are sometimes compared to children, but their care is so different, a child is on a learning curve, so being firm with them is a beginning of teaching them boundary’s, and is an investment of your time.
I find being firm, cross or trying to ‘educate’ a dementia sufferer a complete waste of time. So the challenge is to be upbeat, calm and say things like ‘ that’s not a problem’ or don’t worry we can sort that out in a jiffy! Surely the measure of success is to create happiness if you can?
How I achieve this and keep sane is slightly unconventional. I have an invisible parrot on my shoulder. While I am saying out loud ‘ you can’t make an omelette without breaking eggs, so let’s not worry’! the parrot has plenty to say on the subject, it can be very funny and has a foul mouth on occasion! it is very fortunate it can only be heard by me!
Does this sound crazy? I really think it helps me?

I love the idea of your invisible parrot! not crazy but it did make me smile & giggle!
x