How to deal with Mum

[Carolynlott]

Mum's been in a care home for four months now - the staff are great, it's small and homely and I know she's safe - so compared to how things were (and what a lot of you are going through) I know things could be worse. Trouble is she hasn't settled and every time I go and see her I seem to make things worse. She looks as if she has seen a ghost and dissolves into sobbing, telling me she loves me and everyone I'm her little girl.

I know there have been threads here before about Mums sobbing etc, but things are getting really bad and I don't know how to deal with it. I have tried being firm - as soon as the sobbing starts I tell her to stop or I won't come back. She asks to come and live with me, or with her sister, and I tell her she can't, I tell her I have to work and I need a life of my own. She asks to go back to her bungalow and I say she can't. Yesterday I really lost it with her, and now I feel so guilty - I know she picked up on it, she always does - she says sorry, she'll be good.

Yesterday I had taken her out to see her sister and she couldn't cope with it at all. She was moaning, panting, hyperventilating, and kept putting her head back on the sofa as if she was fainting. She is prone to TIAs and I was worried about the effect it was having on her.

I'm getting to the stage where I think I am doing more harm than good by visiting her, but the staff keep her going by promising I'll be there on Wednesdays and at weekends.

Should I lie to her and say yes, of course you can come and live with me - we'll do it next week, or say yes, of course you can go home - in a few days? I'm at my wits end.

I can understand her feelings 100% - it was so traumatic for her to go from living alone at home and being put in a CH with people she didnt't know - and seeing me, my kids and her sister brings back everything that used to be, the few memories she still has and makes her past real again. I just don't know how best to deal with it because I seem to be making things worse.

C

 

[Soup Runner]

Carolynlott

Hello.

I don't know how bad your Mum is but you obviously had reasons for moving her into a care home.

When she cries about coming to live with you could you not explain why the home is the best place for her.

If she is in a wheelchair as my mum is, then tell her the doors in your house are too narrow to get a wheelchair through.

When she was at home, was she neglecting herself? Tell her how pleased you are that she is well cared for in the home, fed properly, bathed regularly, her clothes are laundered for her, if she falls somebody will know about it as soon as it happens, whereas if she had stayed at home she could have laid on the floor for hours.

My Mum knows she could not cope on her own. Occasionally she still gets ideas of leaving the nursing home and buying a small cottage to live in. Rather than tell her she can't do that, I point out the benefits and practical reasons as to why she is better staying where she is and then she settles quite happy again.

I don't know if I have made any sense to you, but at least you know I am thinking of you and understand your problem.

Take care

Nina

 

[Grannie G]

How is your mother when you are not there Carolyn? What have the staff said ? I imagine even if she isn`t 100% happy she does not show the behaviour to the staff she shows to you. No one could keep that level of protest up 24 hours a day.

Perhaps now is the time to take a firm stance. Her behaviour is upsetting to you. She has to live in the home because you have to work. If she continues to make such a fuss you will have to reduce your visits.

 

[Val_B]

My Mum's been in a Nursing Home for about 5-6 weeks and her mood is very variable when I visit. Have you tried visiting at different times of day? Have you tried timing your departure to coincide with a meal or other activity?
Mum has a clear memory of moving house to be nearer to me (in early July) and believes that she will be able to live in her new home once her physical problems are solved, but I know this is not the case (she tumbled into dementia after the move). Even after four months the situation is so new for both of you ... I haven't managed to work out the optimum visiting schedule for me and Mum, but do keep in close touch with the staff at the home, as they will be able to give a clear picture of how your mum is coping when you're not there. This is your best guide - but not saying that you shouldn't visit ... It's so hard, isn't it?

 

[Carolynlott]

Hi,

Thanks for your advice. I will talk to the staff to see if these episodes are just for my benefit. At Mum's 6 week review (which I wasn't invited to)the SW reported Mum was "happy and expressed no concerns about going home and understands she is unable to go home". Which quite frankly is a load of tosh - SW-speak, just to sound good on a form. Mum can't express herself at all and will say yes or no to anything, because she doesn't understand the questions.

I have tried explaining to her that she can't look after herself and I can't look after her either and that's why she has to be in the CH but I might as well talk to a brick wall. She is beyond reasoning and understanding. Which is why I was wondering if I should stop trying to reason with her and just say anything to keep her happy - which she will probably forget after a few seconds anyway. It's just like a dripping tap, and I know I should be more understanding but eventually I snap.

Her sister used to share the visiting with me but she isn't well enough to go on her own any more and finds it all too distressing - they are twins and have been inseparable until now, and her sister is having her own "memory" and other physical problems. My family will sometimes come with me and that used to distract Mum at first from her sobbing, but it doesn't work any more, and I know none of them want to come either. There is nothing to do when we do visit - Mum doesn't want the TV on, she can't read or understand things in books, she can't play games, there is just nothing to distract her from her "mission" of complaining about where she is and getting out.

I am sounding very cynical and this is how I feel - resentful and cynical, and I hate myself because my Mum can't help it. I just need to learn to deal with it better.

 

[Grannie G]

Which is why I was wondering if I should stop trying to reason with her and just say anything to keep her happy - which she will probably forget after a few seconds anyway.

Yes. Yes. Yes.

Tell her you`ll try to arrange it.
Tell her tomorrow.
Tell her when the decorators have finished.
Anything which makes her happier is justified.

 

[parmit]

Hi
Don't know if it will be any comfort to you, but when my mum goes in respite(I know it's not quite the same) she is always in tears when we leave and this makes me wonder if she is happy there. The other day when the transport came to collect her for the day centre the escort said to she had seen her in the respite home and she recognised her,smiled, waved and chatted to her when she was collecting another lady from the home. This made me realise that she was not unhappy there only when I left her, rather like a child starting nursery school.
I now just tell her I will be back on whatever day and leave her in the care of the staff who are making her a cup of tea at the time.

 

[Tarika]

My mumhas been in a NH for 16 months now. She did settle for about 6 months then in september she seemed to revert back to how she was before. She constantly asks to go 'home' and says she's ready to walk out (she's virtually immobile but - ' I can go on the tube'. It breaks my heart to hear this every time I visit her but I now say "not yet" and try to distract her. At least she's able to express herself even if it is so painful to hear.
Love Tarika

 

[kia]

weve had to te11 a few sma11 white 1ies to dad cos he sti11 thinks hes capab1e of coming home depsite having 1oads of fa11s at home and in the care home so we say to him yes dad next week your coming home and repeat this about 20 times cos he forgets as soon as u to1d him but it seems to pacify him how can we te11 him your never gonna be we11 enough to come home again but however much we know its the right thing the gui1ts sti11 bad xxxkia

 

[Nels]

It is good to read how other people cope but some advice for our situation would be useful. I can see MIL having to go back into a NH, see long post somewhere else on the board (sorry I'm losing it too!). Hubby was calling in every day on his way home from work and sometimes on his way to work..... when she was in and she often got the staff to call him to find out where he was, apparently they could not settle her. How can I persuade him not to do this when she goes back in, which will be soon I can see. He maintains that if he does not go she gets upset but he is going to be ill soon, since she has been back home he is staying round there as she wakes several times in the night and wanders, despite hospital and NH saying she did not do this.

 

[Helen33]

Morning Carolyn

It does sound like a good idea to stop trying to make your mum understand the reasons because this is an impossible task Therefore finding something to say that has a possibility of enabling her to settle for that moment in time seems definitely worth trying. I would personally avoid using 'tomorrow' unless I was completely sure that this concept has gone otherwise it could cause additional stress and confusion. Things like 'I'm arranging it once the decorators have finished' etc. etc. something that your mum is likely to understand. It may work, it may not but you wont know until you try.

I wondered whether the time of day that you visit means that you experience your mum at the most difficult times for her. If anyone were to visit Alan in the late afternoon or evening then they would surely see a different aspect of him because he is more likely to be sundowning then and no amount of reasoning works whether it is the truth or a fib.

Love and wishing you well

 

[kia]

It is good to read how other people cope but some advice for our situation would be useful. I can see MIL having to go back into a NH, see long post somewhere else on the board (sorry I'm losing it too!). Hubby was calling in every day on his way home from work and sometimes on his way to work..... when she was in and she often got the staff to call him to find out where he was, apparently they could not settle her. How can I persuade him not to do this when she goes back in, which will be soon I can see. He maintains that if he does not go she gets upset but he is going to be ill soon, since she has been back home he is staying round there as she wakes several times in the night and wanders, despite hospital and NH saying she did not do this.

if this was me i wou1d be te11ing the staff that u wi11 visit on a regu1ar basis but to on1y phone u in emergencys and to be honest the home my dads in they dont 1et him use the phone god cou1d imagine him phoning our 1oca1 mp, the docs and basica11y anyone that wou1d 1isten and it wou1d a11 be rubbish they need to say to your mi1 that they wi11 make any ca11s that are needing done cos dare say they are getting paid a1ot to 1ook after her and this disease been what it is they arent in their right minds most of the time 1et them earn their money i wou1d and just keep to regu1ar visits cos u need time out for yourse1ves too hope this he1ps xxxkia

 

[Christinec]

Hi Carolynott,
Mum has been in a Care Home for over 2 years and she still asks to come home. Sometimes she is on the verge of tears and it must be so hard to deal with watching your Mum sob. Staff tell me Mum seems quite content most days although she has good and bad days. Staff also say and I try to remember that off course visits from family set off feelings for a previous life where they were happier and not ill but even if our Mums were home nothing would take away the illness. I cannot give Mum back "home". I try to change the subject to something more upbeat. My daughter is a good one although I often have to show Mum a picture and remind her who she is.Sometimes I have to remind her who I am although she is always pleased to see me when I arrive.

I have to go in the evenings and I suspect this is a bad time as she is tired and would agree timing of visits is important.

At one point I wanted to stop visiting because I felt it only upset both of us and achieved nothing. Mum thinks I never visit her anyway because she has no real long or short term memory although her language and social skills are still good. I talked to the manager at the home and she gave me several good reasons why it was better to keep going. One was that she believes that although the visit may seem bad the person being visited may benefit in ways that are not obvious. Again this is a thought I try to hold when I wonder why it is worth makng the 60 mile round trip after work on a cold, dark evening.

Some visits are better than others and I have got better at accepting this. Realistic expectations help me to deal with distressing visits.

A final thought that helps me cope and again I veryy kind member of the Care staff spoke to me this week about this. There are no better alternatives for Mum now. The home is good and she is well cared for and safe. She cannot be happy anywhere now. Some people would consider that she is lucky to be getting the care and attention I know she is getting. It is not perfect but there is no perfect with this illness.

I really do not mean to be negative just to say visiting can be really hard and these are the things that help me.



Final thought - I often take a flask to make us a hot drink. Something to do and the photo album in my "visiting bag"is always a good distraction. I also put nail polish on sometimes. Activity helps me and her although do not go out anymore as she is getting quite shaky.

XX

 

[Nels]

Thanks kia, hopefully when she does go back to a NH it will not be the same one, but there are not many that will take dementia patients nearby with places available. The staff did not let her use the phone herself but phoned hubby then gave the phone to MIL.... Have tried talking to him today about when she goes back in and he is just leaving now to go to stay overnight again, looking very tired already. Nels

 

[kia]

Thanks kia, hopefully when she does go back to a NH it will not be the same one, but there are not many that will take dementia patients nearby with places available. The staff did not let her use the phone herself but phoned hubby then gave the phone to MIL.... Have tried talking to him today about when she goes back in and he is just leaving now to go to stay overnight again, looking very tired already. Nels

u mean he stays over nite in the nh think your right new home might be better idea your poor other ha1f he must be knackered poor guy must be hard on u too cos trying to ta1K to him cant be easy but i wou1d perserve cos he needs to get rest too xxxxkia

 

[HelenMG]

Hi Carolyn and everyone on the thread.
I too am feeling down today about Dad in his nursing home, also about 4 months. Sometimes dad is just blank, no eye contact, not much conversation, just walking up and down the coridors. It is depressing and heartbreaking. I couldn't cheer him today. He does want to get out and go "home" sometimes and most times we can distract him from that by going for a walk or looking at some pictures of his family. But other days he can be cheery and responsive and give big smiles and hold my hand. He does have some good times too with the care staff but he will also just pace up and down, no eye contact and not talking to anyone, until he is literally exhausted.

I am trying to decide if this is the best place for my dad, or is this just how it is from now on? I cling to the good moments but the bad days do weigh heavy on the spirit.
Helen xx

 

[Grannie G]

It`s hard visiting on bad days Helen but what`s the alternative. I think everyone has doubts on bad days.
Visiting in itself is tiring especially when it`s long term and you get little feedback. I used to hate visiting my mother and have her staring blankly at me. I only went really to keep an eye on the home and let everyone know she had someone to watch over her.
I hope you don`t stay too long on bad days.
Love xx

 

[Margaret W]

Hi Carolyn,

It is so easy for me now that I don't have a mum to worry about, but your post takes me back to when I did, and I posted on here in much the same way as you have done. And the advice I had was always the same - run with it. Yes mum, we will think about you going back home when you are better, or yes mum, you might be able to go back soon. I tried to be logical with my mum "You can't manage on your own" but her response was always "Oh, yes I can, don't try and stop me". It was heartbreaking, HEARTBREAKING!!!!!!!, to hear my little mum so much wanting to be back in her own home. I shed buckets of tears when I left her in the home. You start to doubt whether your mum/dad needs to be where she is, and whether there is an alternative. If there was an alterative I would have gone for it pronto. But there wasn't, cos mum would have been unsafe on her own. There was no choice.

So I would say keep visiting as you are doing, and keep saying "yes, we are looking into it" when he/she asks about going home.

Love

Margaret

 

[kia]

Hi Carolyn,

It is so easy for me now that I don't have a mum to worry about, but your post takes me back to when I did, and I posted on here in much the same way as you have done. And the advice I had was always the same - run with it. Yes mum, we will think about you going back home when you are better, or yes mum, you might be able to go back soon. I tried to be logical with my mum "You can't manage on your own" but her response was always "Oh, yes I can, don't try and stop me". It was heartbreaking, HEARTBREAKING!!!!!!!, to hear my little mum so much wanting to be back in her own home. I shed buckets of tears when I left her in the home. You start to doubt whether your mum/dad needs to be where she is, and whether there is an alternative. If there was an alterative I would have gone for it pronto. But there wasn't, cos mum would have been unsafe on her own. There was no choice.

So I would say keep visiting as you are doing, and keep saying "yes, we are looking into it" when he/she asks about going home.

Love

Margaret

yep tota11y agree with a11 of the above was the same with dad thanks margaret for showing me others go through the same thing xxxxkia

 

[Nels]

Hi Kia,

No he did not stay overnight at the NH although he did spend a long time each evening with her, as well as calling in on his way to work for a little while, she used to create etc if he did not, but since she has been home he has been staying with her, which as you say is not doing him any good at all. He has stayed home from work today and I actually managed to get away from school by 1.30pm (only supposed to work mornings) so have tried to talk to him. Have also spoken to SW and got in touch with the Admiral Nurse for the area, she is trying to arrange to bring forward MILs appt with the Mem Clinic. Oh also found out today that the GP has taken her off his list as he was told she was in a NH out of the area, yes she was but it was an interim measure....... so now have to reregister her etc, hubby has now gone off down there to kick up a fuss, both SW and the Admiral Nurse have both said that should not have happened Nels