Feel so guilty for snapping at mum tonight

[annielou]

I know I've got another post somewhere but I didn't know if I should write this there or not and while trying to figure it out and looking for my other post from friday night/saturday morning I clicked on new thread while not concentrating and so here I am. My brain is mush tonight so sorry if I've made a boo boo.
I know I shouldn't have and I know it doesn't help mum at all but I snapped and shouted at mum tonight when she was upset and confused about where she was, I'd gone to her house to try and calm her and help her and ended up getting upset and frustrated and probably made things worse.
After spending the day at mums from 12 till 6 today hubby picked me up after he finished work and we'd gone home to have tea and then were visiting his parents for the evening. Mum knew we were going and had said this afternoon she would try not to have a crisis while we were there, bless her. I know she can't control that and I was dreading going out tonight as I was worried mum would ring and because we didn't answer she'd wonder where we were. She often rings mid evening to check we are home after visiting her as she tends to forget that I have already rung her as soon as we get in. She sometimes just rings cos she's bored and worryingly lately she sometimes rings because she has forgotten what she does with herself or where she is.
I was worried she'd ring our home and panic we weren't there but I had my mobile and she usually rings that if don't answer home phone after few times. I wasn't looking forward to that as hubbys parents weren't aware mums been having problems yet. But if she was worried I'd rather she rang than sit there wondering and thought I'd deal with that then.
I was on edge and kept checking phone in case it rang and just after nine the inlaws phone rang. It was mum asking if we were there. I rang her back on my mobile in another room hoping she'd just rung to check we were ok and wasn't confused or upset about anything else. She had fallen asleep on the sofa woke up and wondered where we were. Thought we had been there when she'd gone to sleep and wasn't sure if at our house or hers, the more she talked the more confusing her story got. She had rung our house and we hadnt answered so thought we might be at inlaws so looked in her address book and found their number and rung there. She kept saying she was sorry but couldnt understand where we were, why she was alone and why at my house on her own, (she wasn't at mine she was at her own home).
We quickly told inlaws mum has been having problems with her memory and tonight had been asleep and woke up and was confused so we were going to have to go and check on her. So that's that out there now.
When we got to mums she was drinking tea and seemed calmed but once we talked to her could tell she was still unsure whose house she was in and why we hadnt been there and had gone to inlaws.
I was worried she'd go to bed still not sure which house she was in and wake up confused in the night and then panic and either be alone and panicked or ring us in the night and we'd have to go back over so I thought might be better for her to come back to ours again. She'd been at ours for similar reasons on thursday through to saturday and had only been at home two nights. She didn't know if she would be ok there alone so said she'd come.
We went to get her some overnight things together n sort the house out to leave, I was trying to hurry up as by now it was quarter to ten and I wanted get home soon so we could get in and have bit of time to get settled before hubby went to bed for work in morning, but she kept focusing on daft things and undoing everything I did like the curtains, taking the clothes I'd packed back out of bag and looking for the same thing she'd just got. I asked her a couple of times to leave that, when she went to fetch her deodrant and took it and sat down to drink her tea in the room I said can we hurry up a bit mum as its getting late .
I know she couldn't help it and didn't realise what she was doing but at the time I didn't think that, I snapped and told her to stop it when she redid the blind a second time and then went to press the advance heating button again after i'd just told her that didn't need pressing,I'd turned the heating off already I shouted dont press that, just leave it mum! She said why not so i told her again that button doesnt turn it off properly, its a thing she keeps doing lately and then wonders why heating not on and off at right times, she said what does it matter. I said can we just get on with getting your stuff together and go. She said whats the rush I said its getting late and hubbys got work in morning. Then she started following me asking had I checked that, done this, I said I'm trying to concentrate mum to make sure I do everything can you just let me have a minute to do it. She said oh if its that much trouble just leave me here then so I said I cant because you dont know where here is and I dont want to go home for you to ring again and have to come back. She said theres no need to shout, which there wasnt, I said I was sorry. I felt so awful. I ended up locking up in tears and spent the ride home still crying. I don't think mum saw or heard me she was too busy asking if I locked this and that.
When we got to my house she came in and sat quiet staring into space while I had a few minutes trying to stop crying in the kitchen. We put the tele on and tried to chat a bit to calm things down before hubby went to bed and then after nodding a bit mum went up too. I showed her where sleeping because she couldn't remember which is the spare room, I gave her a hug told her I loved her and hoped she'd be ok and got some sleep. She hugged me back and said she hoped I did too.
I just feel so guilty for snapping.
I'm also really worried about her and what to do for best. I think it possibly would have been better if I had stayed at hers in case she woke up confused but its a 1 bed bungalow and I didnt have anything there but keep bringing her where she doesnt usually wake up is probably not great. She was confused and kept coming to look for us when she woke up last time she stayed here and I'm worried about her coming across landing to our room as it crosses top of stairs and if she wants to wander round or get a drink she'd have to go downstairs which she's not used to and is a bit unsteady on so I try to listen out for her getting up which means I don't get much sleep especially as I usually wear earplugs and darent while she's here. Hubbys a noisy sleeper bless him and I have a silly thing about breathing noises so without earplugs I don't sleep much, I end up most of the night just laying there in bed freaked out by his noises and listening for mum moving, and tonight laying there feeling guilty for being sharp with her.

 

[Palerider]

I know I've got another post somewhere but I didn't know if I should write this there or not and while trying to figure it out and looking for my other post from friday night/saturday morning I clicked on new thread while not concentrating and so here I am. My brain is mush tonight so sorry if I've made a boo boo.
I know I shouldn't have and I know it doesn't help mum at all but I snapped and shouted at mum tonight when she was upset and confused about where she was, I'd gone to her house to try and calm her and help her and ended up getting upset and frustrated and probably made things worse.
After spending the day at mums from 12 till 6 today hubby picked me up after he finished work and we'd gone home to have tea and then were visiting his parents for the evening. Mum knew we were going and had said this afternoon she would try not to have a crisis while we were there, bless her. I know she can't control that and I was dreading going out tonight as I was worried mum would ring and because we didn't answer she'd wonder where we were. She often rings mid evening to check we are home after visiting her as she tends to forget that I have already rung her as soon as we get in. She sometimes just rings cos she's bored and worryingly lately she sometimes rings because she has forgotten what she does with herself or where she is.
I was worried she'd ring our home and panic we weren't there but I had my mobile and she usually rings that if don't answer home phone after few times. I wasn't looking forward to that as hubbys parents weren't aware mums been having problems yet. But if she was worried I'd rather she rang than sit there wondering and thought I'd deal with that then.
I was on edge and kept checking phone in case it rang and just after nine the inlaws phone rang. It was mum asking if we were there. I rang her back on my mobile in another room hoping she'd just rung to check we were ok and wasn't confused or upset about anything else. She had fallen asleep on the sofa woke up and wondered where we were. Thought we had been there when she'd gone to sleep and wasn't sure if at our house or hers, the more she talked the more confusing her story got. She had rung our house and we hadnt answered so thought we might be at inlaws so looked in her address book and found their number and rung there. She kept saying she was sorry but couldnt understand where we were, why she was alone and why at my house on her own, (she wasn't at mine she was at her own home).
We quickly told inlaws mum has been having problems with her memory and tonight had been asleep and woke up and was confused so we were going to have to go and check on her. So that's that out there now.
When we got to mums she was drinking tea and seemed calmed but once we talked to her could tell she was still unsure whose house she was in and why we hadnt been there and had gone to inlaws.
I was worried she'd go to bed still not sure which house she was in and wake up confused in the night and then panic and either be alone and panicked or ring us in the night and we'd have to go back over so I thought might be better for her to come back to ours again. She'd been at ours for similar reasons on thursday through to saturday and had only been at home two nights. She didn't know if she would be ok there alone so said she'd come.
We went to get her some overnight things together n sort the house out to leave, I was trying to hurry up as by now it was quarter to ten and I wanted get home soon so we could get in and have bit of time to get settled before hubby went to bed for work in morning, but she kept focusing on daft things and undoing everything I did like the curtains, taking the clothes I'd packed back out of bag and looking for the same thing she'd just got. I asked her a couple of times to leave that, when she went to fetch her deodrant and took it and sat down to drink her tea in the room I said can we hurry up a bit mum as its getting late .
I know she couldn't help it and didn't realise what she was doing but at the time I didn't think that, I snapped and told her to stop it when she redid the blind a second time and then went to press the advance heating button again after i'd just told her that didn't need pressing,I'd turned the heating off already I shouted dont press that, just leave it mum! She said why not so i told her again that button doesnt turn it off properly, its a thing she keeps doing lately and then wonders why heating not on and off at right times, she said what does it matter. I said can we just get on with getting your stuff together and go. She said whats the rush I said its getting late and hubbys got work in morning. Then she started following me asking had I checked that, done this, I said I'm trying to concentrate mum to make sure I do everything can you just let me have a minute to do it. She said oh if its that much trouble just leave me here then so I said I cant because you dont know where here is and I dont want to go home for you to ring again and have to come back. She said theres no need to shout, which there wasnt, I said I was sorry. I felt so awful. I ended up locking up in tears and spent the ride home still crying. I don't think mum saw or heard me she was too busy asking if I locked this and that.
When we got to my house she came in and sat quiet staring into space while I had a few minutes trying to stop crying in the kitchen. We put the tele on and tried to chat a bit to calm things down before hubby went to bed and then after nodding a bit mum went up too. I showed her where sleeping because she couldn't remember which is the spare room, I gave her a hug told her I loved her and hoped she'd be ok and got some sleep. She hugged me back and said she hoped I did too.
I just feel so guilty for snapping.
I'm also really worried about her and what to do for best. I think it possibly would have been better if I had stayed at hers in case she woke up confused but its a 1 bed bungalow and I didnt have anything there but keep bringing her where she doesnt usually wake up is probably not great. She was confused and kept coming to look for us when she woke up last time she stayed here and I'm worried about her coming across landing to our room as it crosses top of stairs and if she wants to wander round or get a drink she'd have to go downstairs which she's not used to and is a bit unsteady on so I try to listen out for her getting up which means I don't get much sleep especially as I usually wear earplugs and darent while she's here. Hubbys a noisy sleeper bless him and I have a silly thing about breathing noises so without earplugs I don't sleep much, I end up most of the night just laying there in bed freaked out by his noises and listening for mum moving, and tonight laying there feeling guilty for being sharp with her.

Hi @annielou if its any help I just got woken up by mum who had wandered downstairs and made such a loud noise it woke me from deep sleep. As I came downstairs she passed me in the hall way with a load of tea towels and said she was going back to bed. I asked what was wrong and she said she didn't know but was tired and off to sleep. So consequently I am sat here now wide awake with a coffee writing this to you. I am up at 6am for work.

Its very hard not to snap at someone with dementia when they have their wobbly moments and I don't know what the answer is. I have reached the point where the behaviour passes over my head and it doesn't push the buttons it used to. I know some people find it hard to do that, but I don't. When I have snapped in the past I have felt terrible and afterwards realised it wasn't useful for mums sake or also for mine. Try not to get too upset by it, atleast you have insight in how their behaviour affects you at times, which is better than no insight. She will have forgotten about it by tomorrow and you will have a another chance to start over.

Might as well iron something while I'm up ...not much else to do

 

[goldfinger70]

I am new to this I guess but it must be the day for it...…….. My Mum lives with us after being diagnosed about 12 months ago. She is 73 and was an allied health professional during her life and is now a shadow of herself.
Mum lived on her own until we realised that there was something wrong. She is an insulin dependent Diabetic, has heart trouble, sleep apnea, overweight etc etc. When we realised something was wrong she had told the DR that she had driven around "for hours" trying to get home we knew that her forgetfulness or repeated questions were something more than age.
She lived with my Aunty for a period of 3 - 4 months and during that time Mum's diet improved a little. She doesn't get the concept of Carbohydrates for diabetes so her BGL were anywhere between 5 and 20 on a daily basis and she was taking massive amounts of insulin.
Move forward 9 months, she lives with my husband and I and we have her diabetes under control. She sits around an 8 or 9 most of the day she eats well, has lost 25kg, has a carer that takes her on outings up to 4 times a week.

Our house is not huge so when Mum moved in we gladly moved from the main bedroom to a smaller bedroom as the toilet and bathroom would be closer for her. She was incontinent and slept all day when she first arrived. Mum has slowly take over the lounge and front of our house and my Husband and I are in a small room at the other end of the house. This would be fine if I thought Mum understood.

Mum is an obsessive shopper. I am not sure if this is related to the Dementia but she has 100prs of undies (im not joking) 60 pairs of jeans or pants, 100's of shirts, tops etc. She has 4 pairs of swimmers...………….. When she moved in with us we told her that she would have to reduce her closes. Many of them don't fit now she has lost weight and then she can buy more.

Being 73 she is also no good with technology. She asks me at least once a week if we can buy her a mobile phone. She has one. Doesn't know how to use it. We bought a large digital TV for her, but cant work out how to play a movie.
And Mum cant budget, She has to spend money where its to buy presents for family or just buy more stuff and clothes.
Oh and she doesn't sleep through at night. Getting up most nights several times to go to the toilet. I have to get up at 0430 - 0500 each day and I am now so tired I can hardly think.

So her and the carer go to town last week and come home with a TV and were setting it up in her bedroom when my husband came home. My husband stays at home with her during the day as we have acerage and she has a carer who comes to the house.

She cannot understand why we got upset that she bought a TV with no consultation. She only has to ask to have a DVD put on. She cant use the DVD Player in the living room and reckons that she can work the new one...………….. We don't want her sitting up watching TV all night and th4en sleeping during the day.

She has a couple of jobs - folding and washing up. On a daily basis you have to rewash the dishes as she cant be using hot enough water and there are marks on some on the plates etc. and HAS to fold the minute you bring in a basket of washing...….

My question is - Can our LO's have selective memories. I would ask Mum on a daily basis to NOT washup until my Husband and I have had dinner. We make sure that she eats around 1830 - 1930 and as I work an hour away from home I don't get home each day until 1800 so we eat between 1930 - 2030. Last night she poured the grease we use to cook chips into the washing up water and it left a thick layer of grease on all of the dishes and she wanted to argue that she didn't when she asked my husband why he was pouring Caustic down the sink.........It just funny how she can remember that she loaned her brother some money last week and that her new lift chair arrived this week but cant remember what I ask her to do or not do on a daily basis...……...

My husband lost it and let her have it. She had upset me on Sunday, again over the washing up and cant remember that conversation which got a little heated. She says things like "you know I love you?" so she knows that she upset me.

I guess we need a break. My brother comes to visit every 3 - 4 months however it has been 4 months and he is not due another 4 weeks. Mum is due to have a weeks respite in a Care Home and I think we can all benefit from a break...…….

I know mum is forgetful but I do wonder if it is selective. How can she know what days the carer is coming, when she is going to the movies or that her new chair arrives today but cant remember that the washing up can be done in the morning??

 

[Pete1]

Hi @annielou, I feel for you all, it is one of the most frustrating and saddest things when your loved one doesn't know where they are. I went through the same as you, Mum would call saying she was at her mothers (who died decades before) and could I please pick her up....I used to try and reason with her and explain she was in her own bungalow (often getting annoyed at her refusal to accept that it was) in the end I used to say 'OK no problem I'll be round in a bit, what's the weather like there....' - as at this stage I was going round twice a day (with carers visiting 3 times a day). Often too when I arrived Mum had packed stuff which hung from her walking frame to take with her, it was very sad to witness. At first often the root cause for the increased confusion was infection (UTI) - so it might be worth you getting that checked out - I became very attuned to spotting infections (which become more frequent). However, the reason that eventually Mum went into residential care was her fear and anxiety of not knowing where she was or even recognising her own bungalow - she suffered from sun-downing so it was generally worse late afternoon early evening. In my experience if it is not an infection based confusion, it does increase in frequency. When Mum went into residential care she improved significantly (by this time the confusion was greater and she had taken to leaving the bungalow - although I'm still perplexed as to how she did being very frail and on a frame) and although she still had confusion the staff could reassure her and she was genuinely much happier in herself - and as I used to visit her during the day (late morning though to mid afternoon) I had, on the whole, less exposure to it and it made life much happier for all, as dealing with those situations is absolutely heart-breaking.

Please don't feel bad at all at snapping, in those trying circumstances most of us do. We always feel guilty afterwards, although generally our loved ones with dementia don't remember. Unfortunately in a state of confusion they often take quite a while to do even the simple things - and patience isn't easy when you are tired and worn out through the stress of the situation and have to get up early in the morning. Do take care of yourself.

 

[Rosalind297]

@annielou you are doing a great job in extremely difficult circumstances. Cut yourself some slack.

Yesterday, after a full six hours of care in the morning, I lugged a petrol mower (which I bought) around my mother’s lawns despite being 64 with arthritis in my shoulders, then made her tea with cake and milk I had bought only to hear her say to her friend who, on seeing I had mowed the lawns commented that his son was going to mow his on Wednesday, “you are SO lucky to have people to do these things for you. I wish we were all as lucky as you”. To which her friend said “you have Ros to do things for you. She does a lot more for you than Mike does for me”. To which the incredulous reply was “Ha! Does she?” followed by laughter. I could have shouted then - but absented myself.

I have raised my voice in the past but have now managed to turn my bad times into a quiet sulk, which doesn’t get noticed. 10 minutes later I snap out of it and remember it’s the disease not Mum. If my real Mum, the one before dementia, could see us now she would be utterly mortified. It’s difficult to keep this uppermost in one’s mind but with practice you train yourself to react to the disease not the person.

Your love for your mother and your kindness towards her in difficult circumstances shines out in your post. It’s easier said than done but try to be kind to yourself as well. There are going to be plenty more times when it feels overwhelming but I’m sure you will find the coping mechanisms needed to support your dear Mum.

 

[annielou]

Hi @annielou if its any help I just got woken up by mum who had wandered downstairs and made such a loud noise it woke me from deep sleep. As I came downstairs she passed me in the hall way with a load of tea towels and said she was going back to bed. I asked what was wrong and she said she didn't know but was tired and off to sleep. So consequently I am sat here now wide awake with a coffee writing this to you. I am up at 6am for work.

Its very hard not to snap at someone with dementia when they have their wobbly moments and I don't know what the answer is. I have reached the point where the behaviour passes over my head and it doesn't push the buttons it used to. I know some people find it hard to do that, but I don't. When I have snapped in the past I have felt terrible and afterwards realised it wasn't useful for mums sake or also for mine. Try not to get too upset by it, atleast you have insight in how their behaviour affects you at times, which is better than no insight. She will have forgotten about it by tomorrow and you will have a another chance to start over.

Might as well iron something while I'm up ...not much else to do

Thanks palerider x Hope you got some sleep before work x
I hope I can get to a stage where I don't get upset and agitated as much as it feels so bad to have snapped. She doesn't seem to remember it this morning though thankfully seems ok with me.
Did you do much ironing? I hate ironing but usually do it every tuesday for about four hours but the last few weeks I have been only doing a couple of hours before going over to mums and was wondering if I would get time to do any today as yesterday she asked me to over at lunchtime. Now she's ended up here again maybe I might get some done at home today but then again maybe not, will see how it goes and try to remain calm x
Hope you have a better night tonight x

 

[canary]

Hi @annielou . I think we have all snapped at out PWD at some stage. We are none of us saints and when we are tired it is much harder.
I have a feeling that keep swapping between your house and her home is adding to her confusion. I think that you and your OH are going to have to think about a permanent solution to this - it may be that she is never going to settle back into being on her own during the night.

Hello @goldfinger70 and welcome to DTP

My question is - Can our LO's have selective memories.

The answer to this is yes. When they start losing memories it isnt that there is an overall loss - it is more like removing bits of a jigsaw puzzle, so some bits are entirely lost, but other bits remain intact.

 

[annielou]

Thanks for the replies, mum doesn't seem upset about me shouting yesterday and hasn't mentioned it. She seems quite happy with me so thats a relief but I still know i shouldn't have done it.

@pete 1 I read a bit about sundowning the other day and I think mum maybe suffering that, she does get worse as the day wears on and most of her really confused not knowing where she is, what she does happens on an evening.

@Rosalind297 That must be so upsetting x. Sometimes I get frustrated with mum who although often says I am lovely and do so much for her she does expect more and more and if I can't do something for her or don't go as often as she wants she can get annoyed at me for it and I do find myself thinking, what about everything else I do for you.

@goldfinger Your mum seems to have lots of health concerns as well as memory problems that must be such a lot for you to monitor.

Mum is a terrible eater always has been fussy, as am I, but doesn't like to cook for herself and has been getting worse lately and now barely eats even if she's with us. She has had problems with constipatition and diarohea all her life and gets quite a few upset tummy aches from constipation which can then turn into diarohea, sometimes quite violent, the bouts of those and the fear of a violent bout of diarohea coming on while she's out has put her off going out much for quite a while. She used to go out with us shopping or for a walk most weekends but over the past few months that has dropped away.
She also has something wrong with the veins in her leg, peripheral arterial disease I think it is. It makes her leg ache and feel heavy and slows her down walking but hasn't really been too bad previously. She was told about it a good few years ago but it didn't seem to be getting any worse after a year and so they discharged her from hospital. Now with doing very little lately she is very slow and gets tired easy and says her legs feel like jelly so doesn't like my stairs.
She just went up to the loo and back and then ten minutes later went back up to have a shower and now is back downstairs with a cuppa and this morning on feeling shattered with legs like jelly.
This morning she says she still doesn't know about her house, she's not sure wants to go back to it but doesn't want to go in a home. She says she thinks she can remember my house more. She got up twice in the night last night and went back to bed no fuss or wondering where she was but when she stayed on thursday friday last week she came looking for us and wasnt always sure where was when woke up.
Will have to see what today brings.

 

[RosettaT]

My mum often confounded me with what she would remember and what she couldn't. I don't think she had the capacity towards the end to pick and choose what would wind me up so wasn't deliberate. She would ring 7 times in 25 minutes to ask what colour bin to put out and yet she she never forgot she had a hospital appointment or doctors appointment. She was always washed dressed and ready to go when I got to hers.

 

[Moggymad]

Hi @annielou if you haven't already got one it might help to use a night light upstairs so at night your mum can see where she's going without putting the main light on. Also if staying with you becomes a regular thing you might want to consider a stair gate at the top to allay your fears of her falling down the stairs. Beware though as some determined folks may try to climb over it!
As canary says you & hubbie need to have a good talk about your mums living arrangements as the more she stays with you I feel the more anxious she will be on her own back home & it may become impossible to reverse. It was the dreadful anxiety & putting herself at risk that made it impossible for my mum to live alone & once in respite/carehome she lost all anxiety although she did keep saying she wanted to go home for a while & still does occasionally even after 2 years!

 

[annielou]

Thanks for replies, yes I think I agree that bringing mum to ours when she has a panic isn't helping her confusion about her own house and where she lives and it does seem to be making her more reluctant to be on her own in her own home. She was already wanting to see me most of the time before this past week when she had been struggling to remember where lives anyway but even more so now.
I keep thinking I should probably have stayed with her at her house and let hubby come home last night and last week when we brought her over for a couple of nights. That way she would be at her home and on one level and wouldn't have to struggle with going up and down my stairs and I wouldn't be worryin she might fall down them in the night.
But I fear she still won't want me to leave her alone there after that period of confusion passes and even if she does let me leave when she is feeling bit clearer about her house for a while, when she gets confused again I will need to go back again and will be on tenterhooks in the meantime waiting.
I thought of packing a bag with night things, toiletries, clothes, phone charger etc and leaving it in hubbys car and then if I got called over at any time at least I'd have some things ready. But it doesn't solve the problem of no spare bed at mums and the bigger problem of when I can leave her alone.
I suppose really I feel she cant be on her own but I am not sure hubby and I are ready to have her live here. I thought I would be more willing to do that and feel really bad at delaying it. The thought of never being alone, always having mum to think about when deciding what to watch as she only follows certain programmes and won't watch much of what hubby and I like, having to think of what she'll eat and won't, which isn't the same as us, I can't put my earplugs in for listening out for her getting up so cant sleep with hubby snoring. He slept on the sofa last night bless him so I could nod and still be upstairs to hear mum but thats not a long term idea. Having her here she follows me around asking what I'm doing whenever I leave the room for ten minutes. Mind you when she was at home shes asking me to go over or pick her up all the time and when not there she's on the phone. So I don't get much time on my own or chance to do things even housework anyway.
Besides my selfish reasons there is practical things, like the big worry about her managing our stairs, she is really wobbly on them lately. I could get a stair gate for nighttime but she still has to get up n down and I don't think it would be suitable for a stair lift as the steps end at our bedroom door so nowhere for it to rest. Her bathroom is a wet room with shower but we have a shower with a big step in and out that I have to constantly remind her about it.
It's overwhelming all the decisions and things to consider isn't it and we haven't even got her to the gps yet (appointment on friday if can get mum to go) so no diagnosis or anything.
Wish I could rewind a couple of years and have my old mum and life back

 

[canary]

These are hard decisions to make. Mum wanted me to leave my job and husband and go and live with her so that I could look after her. Im afraid that was never going to happen. There comes a time when you have to start to think about what they need and what you can cope with, rather than what they want.

Wish I could rewind a couple of years and have my old mum and life back

Oh, yes

 

[Moggymad]

Yes I remember those calls wanting me to go to my mum as she felt all muddled & didn't know what she was doing. Because eating & taking meds became such a problem as well as personal hygiene I had to get carers involved against her wishes. Trying to deal with it all without outside support just wasn't working. None of it was without its problems even then but it did help for quite a while & having other pairs of eyes letting me know how things were mean't I didn't need to dash off to every phone call. It is a long road but take a step at a time.

 

[annielou]

I think mum would like to live with me because she doesn't want to be on her own.
She's always spent a lot of time with us as my sister lives 3 and 1/2 hours away, her brothers call about once a year and to be honest those aren't in good health now, one has dementia and the other parkinsons. She hasn't any friends around her either. She used to have a friend who she lived near her but they moved to different areas and although the friend stayed in touch for quite a few years the visits dwindled and last year the friend stopped ringing too. I have a feeling mum may have upset her because at the time she was starting to forget things and also being quite argumentative and forthright in her opinions. We've always spent lots of time with mum but recently its increased more and more and as shes got worse with her memory and lower in her mood its got more and more.
I think she'd like it to be constant and live with us because she wouldn't need to have to try work things out and do things herself because she's terrible at choices and decisions now. When I'm with her she tends to just ask me what we're doing, watching, eating etc. Mind you she often says 'oh no am not bothered about that'. But I'm sure it is tempting for her to think if she lives with me she won't have to think about those things anymore.
She also wouldn't have to worry about remembering to lock up, turn things off and when to do jobs round the house which would be a relief for her as she constantly worties about them.
I know going back home alone is playimg on her mind most of the afternoon she's been asking can she stay for tea, has she got food in, what does she do at home, will i make sure shes locked up before i go. And also am i sleeping here tonight or am i going to my house, where is my house.

 

[goldfinger70]

Hi @annielou . I think we have all snapped at out PWD at some stage. We are none of us saints and when we are tired it is much harder.
I have a feeling that keep swapping between your house and her home is adding to her confusion. I think that you and your OH are going to have to think about a permanent solution to this - it may be that she is never going to settle back into being on her own during the night.

Hello @goldfinger70 and welcome to DTP

The answer to this is yes. When they start losing memories it isnt that there is an overall loss - it is more like removing bits of a jigsaw puzzle, so some bits are entirely lost, but other bits remain intact.

Thanks - I think we just need a break. It is really hard, as everyone knows to have a parent with Dementia in your home 24hrs a day. My husband is the one who does everything for her and its like having a defiant teenager sometimes. She "seems" to refuse to follow some basic requests for peace in the home and then it gets to the point where my husband cant do it anymore...…………. In our situation we have both had kids since we were early 20's (~30yrs) and our youngest has just left home and just when you think that we can go and have adventures as a couple again my Mum becomes unwell with Dementia and has to come and live with us. We could put her in a home but I wanted to try to spend some time with her before that was our only option.
Some days are diamonds, some are stones. Tomorrow is always a new day and we will get through this.

 

[Palerider]

Hi @annielou . I think we have all snapped at out PWD at some stage. We are none of us saints and when we are tired it is much harder.
I have a feeling that keep swapping between your house and her home is adding to her confusion. I think that you and your OH are going to have to think about a permanent solution to this - it may be that she is never going to settle back into being on her own during the night.

Hello @goldfinger70 and welcome to DTP

The answer to this is yes. When they start losing memories it isnt that there is an overall loss - it is more like removing bits of a jigsaw puzzle, so some bits are entirely lost, but other bits remain intact.

Remember the book case analogy @canary ? Another way of looking at dementia is the book case analogy, this film by the Alzheimer's Society is useful

 

[annielou]

I've never seen that film before, it was a good way of explaining it.
One of my big worries is that as more of mums memories fade and feelings are what she has left to go on each time I upset mum I'll leave her with sad feelings and as we have more boring days where she's not up to doing much, days when she is confused and I cant make the confusion stop and we have less fun times together eventually when she sees me those sad bored and upset feelings will be what she feels and equates with me.

 

[Palerider]

I've never seen that film before, it was a good way of explaining it.
One of my big worries is that as more of mums memories fade and feelings are what she has left to go on each time I upset mum I'll leave her with sad feelings and as we have more boring days where she's not up to doing much, days when she is confused and I cant make the confusion stop and we have less fun times together eventually when she sees me those sad bored and upset feelings will be what she feels and equates with me.

Thats one one way of looking at it, but something your not seeing is that you obviously make your mum feel safe and loved 99% of the time and that is a big positive. Learning how to manage this is hard, because she will make demands on you that you can't always meet.

I got carers to come in the end because I couldn't carry on as I was. Mum is quite happy at home in her bubble when I have left for work, but sometimes she would be up and wanting to come with me, which isn't possible. This is where the carers come in and even though on some days she won't let them in the house, they can check to see she is ok even if at the door and talk to her, other days she lets them in and they chat for the visit and she makes them a cuppa (which should be the other way round), but I'm not bothered because its a way of manageing the situation where I don't feel guilty about it and mum is able to cope on her own. I confess that mum is lucky in the respect that she was often on her own in her married life as dad was away for long periods in the navy, and even now she thinks that -so she potters quite happily until I come home.

 

[annielou]

Thanks @Palerider hubby just said the same thing when I told him about the video and my fears today. x
I tried to keep the idea of how I was reacting could make her feel while I was over there today though just in case I added to sad upset feelings she might associate with me, but it was quite a trying day.
I managed ok to start with. I rang this morning to check she was ok and straight away she asked if i was going to see her today so I told her yes I'd be there about 12. She rang at 11 just before I left the house to ask if I was going to see her today so I said yes love I'm just about to leave I'll be there in an hour, OH lovely you are good she said. Then she rang my mobile before 12 hello love I was just wondering if you're coming to see me today?so I told her I'd just got off the bus and be there in a few minutes, I didn't say anything about having already told her this twice on two other calls, she obviously didn't remember and why risk upsetting her I thought.
When I'd rung the first time she'd said was going to change her bed before I got there but when I got there I could see she hadn't so I asked if she wanted to do it now and I'd give her a hand. She said oh yeah I meant to do it after putting my washing out. I'll do it now but you don't need to help me I can manage. She seemed ok with the reminder and doing it but then just after she started she seemed to become annoyed about it saying she could do it on her own, didn't want me to help, then a few minutes later well you aren't helping me and when I did, telling me she didn't need me to do it. She did let me help finding bedding and making it up as she was struggling to find things. Then we started sorting out her bedding cupboard and airing cupboard as she said it she kept meaning to do it but didn't get round to it and I said we can do it now together if you like which went ok, but that lead onto her asking me to sort a kitchen drawer which I couldn't do properly without doing the other one so I took that out too and then again she switched back and forth between encouraging me to do it and saying you always have to be sorting something don't you I don't come into your house and go through your drawers. She kept adding other jobs for me to do while I was doing one thing and then saying she could do it herself but apart from saying at times I'm doing it because you asked me to, and shall I carry on? I kept quite calm and didn't say much.
Unfortunately after I'd finished the jobs mum kept talking about why I was doing her jobs and why she wasn't and how long it had been since she'd done things as she's not really doing things around the house now unless I remind her and even then at times it takes a few days of me mentioning it. She was shocked she's not been cleaning as much lately as she's always been a BIG cleaner. She was talking about how could she be so different and keep forgetting things and asking for ways of trying to remember when to do things. I've made lots of suggestions to try help remind her in the past like diaries, noticeboards, notepads, making a routine but she usually decided against them without even trying them. She was asking about how often I went and was sad at how much she was asking of me by ringing me and asking me to go over so much and didn't realise she was doing it. She said maybe she should be in a home but didn't want to and again talked about how bad homes are even though she doesn't know anyone in a home. So what else could she do, she didn't want carers or people coming in her house either.
I was trying to answer her but not to go on too much, and kept trying to move the conversation onto other things as to be honest we have had this conversation quite a few times before and although at times during it she seems to be understanding and seems like she wants to do something about things, she doesn't really retain it or follow it that well. It just seems to upsets her and me without getting us anywhere, but she just wouldn't let it go today and kept going back to talking about it.
After about an hour and half of it my mind was whirring, I felt like it was going to explode and I was on the verge of tears when she went back to asking about whether to write herself a note to remind her to wash her hair in the morning for about the twelfth time and I said yes why don't you do it now then its done, but mum can we talk about something else and just give this conversation a rest for a bit now please. She said why what do you mean I've only just asked haven't I?, I said no you've kept asking, I know you can't help it but I just need a bit of a break for a bit mum I'm sorry. She said oh sorry love, but then started again about writing things down and not remembering things so I ended up saying I needed the loo and hid in the bathroom for ten minutes to have a cry.
When I came back we put the tv on and managed to stay off the subject a bit more but then she moved on to what days I was seeing her next and what we were doing when over and over again until hubby arrived with our mcdonalds tea. We managed about an hour and half of gentle chat and watching tv before we left with hugs and love you lots. Here's hoping thats the bit she holds on to rather than the agitation and upset bits.

 

[canary]

@annielou I think you have described the problems exactly. It is so hard the way they flip flop with what they want and the conversation can turn in a heartbeat. I think you coped admirably with the situation and I shall recommend that you are nominated for sainthood!

One thing though, is to try and head her off if you get the feeling that what she wants will lead to trouble. You dont have to follow her lead in every situation, so if she asks you to do something that you can foresee will cause her to get agitated, then head her off by saying something like "yes, good idea, but can I have a cup of tea first?". Try doing things between you (as in the bed), but not do them on your own (as in the drawers), so that if she says that she can do it without you, you can say "yes, but I like helping you"