just how exactly do you stay sane yourself..

[southwalesgirl]

Hi I'm a new member desperate for help support and sane conversation. My husband and I have been looking after my mother in law who was diagnosed with vascular dementia in 2008 and mild alzheimers in January 2014. He is one of four siblings, but the others don't help or support in any way at all. They don't even visit or call her.

She was asessed by social services and referred to the local mental health team who diagnosed her with moderate to severe depression, for which they prescribed a second anti depressant. A care package and meals on wheels and day centre was introduced in february. She has responded well to it much to everyones surprise.

She can be a lovely lady, happy and chatty. At the drop of a hat she can turn so nasty spiteful and vicious she might as well cut us with a knife. We have been accused of stealing all her money and leaving her with nothing; of taking items from the house; of neglecting her and leaving her to starve. She says things to our face and over the phone. It gets so bad we don't answer the phone and she leaves messages on the ansaphone which have made me cry they have been so nasty. When you tell her these are not acceptable, she denies all knowledge of them and calls us liars. There are times when she calls and never speaks you just get heavy breathing down the phone.
She is currently very secretive, hiding letters bills and her purse. She forgot where she had put her purse a few weeks ago. My husband and I turned the place upside down and could not find it. She blamed the carers for stealing it, then she said the gas man took it when he changed the radiators and valves - this hasn't been done. Then it was us who had taken it. We ended up phoning the bank and stopping the card and having a new one. The day it arrived we discovered her purse pushed in the back of her sock draw - somewhere we had already checked and found nothing.

She gets so bad we have stopped taking our 5 year old daughter to see her so often. She has noticed this and gives us even more abuse, if we try to say why we are liars and she shouts and screams at us. We try not to listen to ansaphone messages if our daughter is around as she gets upset and doesn't understand why nan is being so nasty.

We do everything for her and yet we are the bad guys - the other 3 siblings do nothing and they are angels. My husband and I are at the end of our tether. We are struggling to cope with her moods swings and spitful behaviour. We keep telling each other it is the disease, but it no longer helps. We are both hurting and wondering why on earth we keep supporting her. Please tell me just how you are supposed to stay sane yourself in this situation. If we don't go there she rings and gets abusive. We just can't win. It is getting us down BIG time and affecting our family life. With jobs and two kids and her its just too much for us both, even with the care package in place. We have tried to explain this to the family but it didn't get us anywhere, they just don't care and are not interested. That hurts as well.
How do keep going and remain calm? How do you keep yourself sane? How do you cope with your feelings of hurt, anger rejection and guilt?

I'm sorry this is so long, I really needed to get if off my chest. I'm going to go and have a good cry now

 

[dottyd]

Aw! Its easy to say 'try not to let it get you down' because it so easily can.

Does she wander? Is she still safe on her own. Can you disconnect the answer phone. If ishe is still safe at home I would get rid of the answer phone you don't need that abuse and after ascertain hour I would unplug the phone.

Do the other children live nearby. Even if they don't, make sure there is a list in the house of everyone's numbers in case of an emergency.

Has she got enough to occupy her? I told my mum that I couldn't be with her all the time so I was arranging for her to go to a senior citizen group ( it was daycare) and if she didn't go then she would be sat on her own all day. She went 1 afternoon a week and it gradually increased to four before she got too bad.

A friend would take her out and I would take care of the rest.

When you are at home with your family just make it as nice and relaxing as possible.

Last night we switched off the tv...we barely watch it anyway, played some meditation music, lit candles and burned nag champa. I mixed some lavender and frankincense oils in a carrier oil and gave OH a relaxing massage finished off with some hot stone therapy.

Then he played the Tibetan bowl for me and then massaged the oil into my back and shoulders.

Frankincense is a deeply relaxing oil and we both slept deeply for about seven hours.

You need to get a good source of oil.

 

[Noorza]

I am not proud to say, but when I was going through this stage, I phoned myself from my mobile, to my landline and filled up my answerphone so no more messages could come through. Dementia or not, and it is right it is dementia, they hurt.


The siblings: I have a similar situation, I was where you are now, probably worse. I had to learn the hard way, that I cannot change my siblings behaviour, I can only change my reaction to their behaviour. I don't even bother now letting them know what's happening, they don't care so what's the point. I was only wearing myself out and getting frustrated by their lack of support, so I've let it go and I feel better which is what is important.

See my siggy at the bottom, it's there because I live to that now as much as I can and it helps.

Your daughter: You do right to protect your daughter, forget MIL's dementia bile, you can't really help MIL's quality of life much now, she has dementia and there is no cure, this angry stage has to be got through but there is no reason a five year old has to deal with this. Protect the child, children first each and every time in my book. I have told my son not to answer the phone when we were at this stage I have no guilt about that.

Guilt: You are the ones doing it all, you don't deserve to feel guilty. Do the siblings who are doing nothing trouble themselves with guilt?

Seriously, this disease is so hard on the carers and especially those who do actually care, like you and your husband. Build in some time for you and consider if the package your MIL has now is sustainable without your help because no one can force you to carry on like this at the expense of your happiness and health.

 

[dottyd]

Wise words Noorza.

Liked your idea with answer phone.

No one should have to suffer abuse least of all your child. Far better for her to have lovely memories ocher grandma, than a nasty spiteful one.

My friends husband expects his wife to do far too much for his mother because of the la k of help from his siblings. She's not too well herself either.

When the straw that broke the camels back time came, he got in 22 hour care. It's costly. £800 per week but at least my friend has most of her life back.

 

[Chuggalug]

Hi I'm a new member desperate for help support and sane conversation. My husband and I have been looking after my mother in law who was diagnosed with vascular dementia in 2008 and mild alzheimers in January 2014. He is one of four siblings, but the others don't help or support in any way at all. They don't even visit or call her.

She was asessed by social services and referred to the local mental health team who diagnosed her with moderate to severe depression, for which they prescribed a second anti depressant. A care package and meals on wheels and day centre was introduced in february. She has responded well to it much to everyones surprise.

She can be a lovely lady, happy and chatty. At the drop of a hat she can turn so nasty spiteful and vicious she might as well cut us with a knife. We have been accused of stealing all her money and leaving her with nothing; of taking items from the house; of neglecting her and leaving her to starve. She says things to our face and over the phone. It gets so bad we don't answer the phone and she leaves messages on the ansaphone which have made me cry they have been so nasty. When you tell her these are not acceptable, she denies all knowledge of them and calls us liars. There are times when she calls and never speaks you just get heavy breathing down the phone.
She is currently very secretive, hiding letters bills and her purse. She forgot where she had put her purse a few weeks ago. My husband and I turned the place upside down and could not find it. She blamed the carers for stealing it, then she said the gas man took it when he changed the radiators and valves - this hasn't been done. Then it was us who had taken it. We ended up phoning the bank and stopping the card and having a new one. The day it arrived we discovered her purse pushed in the back of her sock draw - somewhere we had already checked and found nothing.

She gets so bad we have stopped taking our 5 year old daughter to see her so often. She has noticed this and gives us even more abuse, if we try to say why we are liars and she shouts and screams at us. We try not to listen to ansaphone messages if our daughter is around as she gets upset and doesn't understand why nan is being so nasty.

We do everything for her and yet we are the bad guys - the other 3 siblings do nothing and they are angels. My husband and I are at the end of our tether. We are struggling to cope with her moods swings and spitful behaviour. We keep telling each other it is the disease, but it no longer helps. We are both hurting and wondering why on earth we keep supporting her. Please tell me just how you are supposed to stay sane yourself in this situation. If we don't go there she rings and gets abusive. We just can't win. It is getting us down BIG time and affecting our family life. With jobs and two kids and her its just too much for us both, even with the care package in place. We have tried to explain this to the family but it didn't get us anywhere, they just don't care and are not interested. That hurts as well.
How do keep going and remain calm? How do you keep yourself sane? How do you cope with your feelings of hurt, anger rejection and guilt?

I'm sorry this is so long, I really needed to get if off my chest. I'm going to go and have a good cry now

southwalesgirl: This is so awful to read and almost mirrors what I've lived alone with; now in my fifth year

I honestly do not know how we stay sane. Most of the time, I'm angry. I used to be a happy, bubbly, silly person, but now, that's all gone. These days, I've just learned to take each day as it comes. With no support, we ourselves have to become the strong ones. That's what I've learned.

I armed myself with as much information as I could, once I understood hubby was suffering from far more than just memory loss. Books and the Internet have helped a lot.

I've had to accept having to stop working for a certain charity organisation I loved for 18 years. It became very, very precious to me, working there, but last year, I had to stop. Now, I go nowhere, except for the shops, and even that is taking a big risk as I'm leaving a very sick man in the home, alone.

Surprisingly enough, you do get used to this, in the end, and you learn to accept it as a normal part of life. As I've said a few times, by now -I wish you courage. Lots of it, and for those who don't want to, or feel they can't help, let it pass. If you let it pass, it's one less thing to cry over.

In all of this time, at least, when my husband was recently unwell, the people I called did take notice and he was given the help he needed. In that one week, I was able to get a bit of rest, and was thankful for it.

I never imagined I'd come to a site like this. But here I am. I just hope nobody minds. Sometimes, I just have to talk! And nobody offers platitudes. That's a big bonus.

 

[Lady Phoenix]

Wow

I came on this forum today looking for advice on a problem that Im having with my lovely lady and I see so many people asking practically the same thing. Also there are so many wonderful replies.

Just this week or so Ive been suffering quite a bit, and to top it off my lady isnt eating at all. Now, Im long enough in the tooth to know that Im dealing with Dementia and not the person, so to speak. i.e. its nothing personal, yet despite knowning that it can really hurt sometimes.

Now, to answer the question how to keep sane, I cant really answer that other than to say to find a channel.
Now, I personally get 3 hours off a day and I live in a village that has a library open 3 afternoons a week and, erm, thats about it.
So, here is what I do. It may not work for you.

- I go for a run at least 3 days a week. Well, I say run, its more of a 2 mile brisk walk with my mobile phone and a set of headphones playing the latest chart rubbish at full volume.
- Once a week I go horse riding. Its something Ive never tried before and Ive now crossed it off my bucket list. O love it so much that I now go every week. Its not cheap at £40 a lesson but well worth it.
- Library when its open. The people there are great and we have a coffee and talk about totally insignificant things like the funny accents they have in Birmingham, or your favourite colour in shoes. Anything really.
- I also volunteer at the local church. They need a piece of land clearing of brambles ready to expand the graveyard. So once a week or fortnight I pop down with my ugly boot and a fork and I dig probably 1 or 2 feet across. The brambles fight back, but its something else to think about
Lastly I read forums. Not always posting. Now, this may come across wrong but sometimes knowing you are not the only person in the world in that scenario helps.

I dont know if any of that helps, but at least realise that you are able to call on help.

Have you spoken to any of the help that is provided for your Mother In Law? They are there for you as well as your MIL

Sorry if this doesnt help

 

[marionq]

I have thrown myself at the various groups provided by Alz Scotland with a vengeance. It gives John company and gives me conversation. He loves his two football groups, we also go to a singing group and today we started a weekly allotment group. We came back frozen to the bone but with rosy cheeks and a good appetite.

At all these groups, and I plan more, there is always someone I can chat to and it is a focal point in the day. Some people come to them with outside carers rather than family.

 

[Mango]

Coping, my 2c worth

How do you keep yourself sane? How do you cope with your feelings of hurt, anger rejection and guilt?

From my experiences so far (with my father-in-law and now my mum):

- I get up a bit earlier in the morning than I really need to. I potter around, do general tidying, play with our dog etc. before I go to work. It means that the day at least starts off in an orderly fashion.

- Exercise - a quick lunchtime walk and an evening walk with the dog on weekdays. Longer walks in the weekend.

- For at least 15 mins at night, reading before I go to sleep. I find if I don't end the day in the different world, the worries of the current one keep me awake!

- When problems arise, I try to deal with them as I would any issue in my job. I work in IT, and people's behaviour is never at its best when they feel that technology has let them down. I find now that I go into "work mode" when faced with a stressed and irrational parent. Of course, I don't do all that well if the work day has been particularly horrid.

- After each "crisis" take a deep breath and move on. Treat your "failures" at coping or saying or doing the right thing as a learning experience to try to do something different (and hopefully better) next time.

I find it also helps to read and research as much as I can (which is why this site is so great) about other people's experiences.

Finally, never underestimate the restorative power (for your or your loved one!) of a nice cup of tea or a glass of wine

Hope that some of that helps,
M

 

[byrnedjp]

The longer this goes on the more im beginning to believe you wont know how much damage is done until, sadly its over.
Its like a tornado, once the wind dies down you assess the damgage.

 

[Lindy50]

The longer this goes on the more im beginning to believe you wont know how much damage is done until, sadly its over.
Its like a tornado, once the wind dies down you assess the damgage.

Oh, how that rings bells for me......

 

[clareglen]

Sounds normal as far as this disease is concerned. To stay sane? Come on this forum. There's always someone worse off, particularly those with spouses. At least, in theory, those of us who look after parents should see an end to it eventually.

 

[Kevinl]

Southwalesgirl, just copy and paste what you've put on here and e-mail it to her children, she's not even your Mother anyway. If you lie on the floor you'll get treated as a doormat. You could suggest putting her in a home see if watching their inheritance disappear at £800 a week focuses some minds.
It sounds like she's past the stage of being herself anymore the demons of dementia are in charge so you can't blame her for what she says and does but as a daughter in law to someone with 4 kids it should all land at your door. Funny they'll all be there for the reading of the will, it happened to me and I still don't know why I fell for it.
K

 

[Motherorchild]

Keep your chin up

Hi , I am new to this forum also .I am retired and am in Australia , brought my mum out eight years ago, one year after my opa passed . I felt very angry at my sister who was "going to help me care for mum ", it didn't happen. Mum has Alzheimers , I am the carer, I was so overwhelmed in the first year. Reading your comments ,as well as a few others , I realise I am lucky... I have mum in respite three days a week, this gives me the time to go to the shops and amble around, or meet a friend I went to school with (56 yrs ago) who is also in the Sydney area. I go to a "wellness centre" with mum , where I meet with and chat to other carers in a similar situation while mum is looked after . All this I found from the aged care in Australia. I don't know what the reciprocal is in the Uk, but there must be help out there for you along the same lines.The thing I find most helpful is being able to talk and laugh about what would otherwise be mortifying with someone who does not understand.I would also keep a 5yr old away from experiencing seeing her nana like that. It is not her Nana , it is the rotten disease she will be seeing, definitely not the memory she needs to keep. Good luck , keep talking to people who wont judge you , but understand what you are going through , let off steam to them (us). :

 

[southwalesgirl]

Southwalesgirl, just copy and paste what you've put on here and e-mail it to her children, she's not even your Mother anyway. If you lie on the floor you'll get treated as a doormat. You could suggest putting her in a home see if watching their inheritance disappear at £800 a week focuses some minds.
It sounds like she's past the stage of being herself anymore the demons of dementia are in charge so you can't blame her for what she says and does but as a daughter in law to someone with 4 kids it should all land at your door. Funny they'll all be there for the reading of the will, it happened to me and I still don't know why I fell for it.
K

I actually had a weekend where I was just so tired and mentally exhausted I did tell them. I didn't mince my words at all. I said that they would be there quick enough when she had died. I just got a torrent of abuse back off one and silence off the rest. It hasn't got us anywhere at all.

Marionq - I looked up my local alz support group. Had some great feed back and a referral form for befriending service which we thought was a really good idea. Giving her someone else to talk to and interact with apart from us will be good for her and it means we get more time to ourselves.

Lady Phoenix - I spent hours last night reading thru the forums on here. It was comforting to know we are not the only people going thru this however lonely we may feel at times. It was good to know her beheviour is "normal" as far as this disease is concerned. I did mange to have a good chat with her social worker as well, as the carers had reported her aggressive behaviour this week. It is good to know that others are witnessing the same as us.

Dottyd - she did wander twice late at night over christmas, but hasn't done that since. She is safe at home at the moment. We did discuss with SW whether to have the gas disconnected on the hob, but the carers were against it incase they needed to cook her something for her tea. So far there hasn't been a problem with it. I'm not sure if she could remember what to do to be honest.

Your responses and reading thru other peoples postings have helped alot. Our daughter is now not going to be taken to see her,as much as it sadden us to decide that. Our phone will now be put onto silent at 7pm every night. My family have been told to text before they call so we can answer. We are going to limit the number of times we react to her calls during the day. She will be getting one visit a day, and if she gets abussive and nasty we shall just walk out and not respond to her outburst. We have accepted that whilst we are alone as far as family help is concerned, we are now aware that there is a host of people out there who can help and support us thru this forum. And for that we thank you all very much. i hope to speak to all again as you have managed to lift the dark clouds that were looming over us, for that we are very grateful. XXX

 

[kingmidas1962]

I just came across this and wanted to say how sorry I was to hear of the lack of support you get from other family members. In addition to the measures youre putting in place as far as visiting / phone calls go etc I would try to document difficult behaviour if you have the resolve to do so - the only reason I say this is if she should wander again, or be violent or nasty to the extent that you need any help from emergency services or the out of hours SS team it does help to have things written down.

And lastly - its often said on here that no adult can be forced to care for another. If things get SO bad that you cannot cope with seeing her then I would suggest you tell SS that you are stepping back and her care is now in their hands....sometime a crisis has to be forced before anything happens - and by 'anything' I mean the possibility of residential care for her when she needs it. I'm sorry I dont know enough about your history to know if this is anything thats ever been thought about ...

As far as keeping my sanity goes, I have had to distance myself from my mum - I used to see her every day, and I now have it down to every other day. I have rekindled some hobbies - nothing dramatic, mainly knitting and crochet! I also take my teenage daughter out every weekend for lunch - she doesnt say much but I know felt neglected and confused over the couple of years I've been trying to balance my life with the care of my parents (dad in care - he has dementia, mum had a breakdown just after he went into care and has been in psychiatric care, has remaining mental health issues)

I also had counselling - it was really this that enabled me to give myself permission to take some of my life back and to ditch a lot of the guilt and anger I felt xxxxx

 

[Boredhousewife]

I'm sorry

I do not know how you keep yourself sane and carry on dealing with them. I have just made the decision to bail on my Mum and leave her to social services because it's the only way I will keep my sanity. I feel so numb. So awful. But I have exhausted every option and am sick of being told that any solution I offer isn't good enough because it either isn't quite what someone else wants and doesn't suit them so they wont support me in getting it done, or from social services: "we have to respect the patients wishes" because despite the fact she is begging me daily for hours to save her from her abusive partner and threatening suicide or murder, she wont follow that through and tell the *police* she wants him to leave her alone. She can't decide which way round her knickers go, and yet they have to assume she is 100% sane when she tells them he has bugged her living room so she can't say anything bad about him, when they ask if he is abusing her.
I give up. I feel like I am in a nightmare where this has all been set up just to drive me mad.
Which is just what she used to say when she first started to go funny. Great.

 

[Boldredrosie]

Come to this forum and share your feelings; you'll find so many of us on here feel exactly the same way. And try what Kevin says. Personally, I'm all for sharing the love, I never keep a compliment to myself but I think in your case you need to share the worry and responsibility with these siblings. Good luck

 

[Rosie56]

I'm very humbled by people's experiences and their resourcefulness and compassion on these forums. In some ways I have it comparatively easy (I don't live with Mum, who is in the early stages). Even so, it has really impacted on my life. I am self employed (no partner, no other source of income whatsoever) and if I don't work, I don't eat. I am now living on my paltry savings. Carrying out 'distance care', dealing with all the various bodies involved, plus some problems (not connected) here at home, eats up a lot of my mental energy and disrupts my sleep and I find I can't work effectively any more. I've done my best to set up various kinds of care for her, which has been pretty time-consuming in itself and the process is still ongoing, still some things to be put in place. Despite everything I can do she still has regular crises - just this week we had a 'lost money' crisis (no money for the carer to do her shopping and over £600 vanished - now found, thank god) and a 'no meds' crisis when the carer couldn't get access to her locked meds box. There's something like this just about every 2 days.

I fear that if I went back to live with Mum I'd have a breakdown, not only because of the usual strains and stresses of caring but also because I always hated living there when I was younger, in fact I was depressed. This feeling about the place hasn't changed over many years, though Mum loves living there.

I have a brother, younger, who lives quite a lot nearer but only goes to Mum's about once every 4 years, when he wants something. He's recently begun to ask if he can 'do something' and I've given him some tasks to do, only to find he drags his feet and behaves as though we had all the time in the world. His great idea is to bung her into a home. What's currently 'eating me' is that Mum's neighbours ring me and sometimes come round when I'm at her house. One of them keeps insisting Mum should go in a home (she doesn't want to, and her Social Worker doesn't think it's appropriate at this stage). I am told, 'This is neglect,' and 'Your name is mud with everyone round here.' This woman doesn't actually understand what's going on - she comes storming round to tell me things I already know - or that the doctor declared that Mum was still capable of making her own decisions. What really infuriates me, though, is that not a word is said of my brother! The last time I got this treatment I said, 'Well, you can tell all these people gossiping about me that how Mum and I work things out between us is none of their business' and I don't think that made me very popular, but too bad. I get some comfort from the Social Worker telling me that actually I'm doing very well, and have achieved a lot in getting various things in place to help Mum. But the unfairness of it, and the willingness of these people to clack their evil tongues, gets me down. I've come to understand that everything I do is maliciously interpreted, eg I get a carer to cook Mum breakfast and administer her meds, and the word goes round, 'She's so negligent that the council had to step in and send someone to help her mother.' Does anyone else get this ignorant criticism?

 

[marionq]

Rosie56 -anyone capable of saying mean things without understanding what is really going on is not worthy of notice. It must be maddening but a decent person would take the trouble to think the situation through,

 

[2jays]

In some ways I have it comparatively easy

Three rules to keep in mind

Rule 1) Stop thinking others on TP have it worse than you

Rule 2) Remember everyone who is a part of TP has it hard.

Rule 3) Remember someone's easy.... Is another someone's hard

To me, your "comparatively easy" would be my nightmare...

Nothing constructive to say. Just loads of hugs xx