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Just a vent

soguilty

Registered User
Aug 27, 2018
23
0
Mum's dementia has crept up slowly. I had her looked at about five years ago - only couldn't attend the appointment through illness so my daughter took her - so my input over what had been happening wasn't there. Age related cognitive decline was diagnosed.
I started looking for homes then - we decided that although we knew she would hate it and we felt she would go downhill, at least she wouldn't be alone at home where she'd had a couple of small falls - where the food was moulding in the fridge sometimes - where she drove into the path of a lorry - where she was drinking far too much because she was depressed and very lonely.
But I couldn't get her to agree. My brother pointed out that she would hate being around others (such is her character) which is true. She is angry and picks holes in everyone and we both thought that when it came to it, it will be a disaster. She would just hate everyone.
We were on edge waiting for something to happen. So, when it did - she actually eventually accepted it and settled in the home in her way (with me visiting regularly).
Her humour is still there at times and she can 'pull people's legs'. Even if she will not admit it, I ABSOLUTELY KNOW she is SO much better in there. Even if she does herself secretly realise this, she would never say as much to me. She wants me to feel as bad as possible, and unfortunately I do at times. But I still KNOW i have done the best I can and I will carry on, although others say to visit less (at times I have)
She understands if anything happened to her there is help on tap. I have made her room look like her old home - lamps, pictures and paintings, ornaments etc.
She is the only resident who has her door firmly closed. But she joins others for lunch and has even started doing bingo and quizzes. Something totally unheard of!
She has taken a vehement dislike of some residents and I have been worried what she'll do (threatened to put her lunch over one poor woman's head). But all that seems to have a settled a little.
When she complains I do ask her what else could have been done? She will glare at me. I offer to move her to one of the care homes I had viewed. She glares some more.
She'd had a complete breakdown as my fathers illness became palliative. I had just spent four years retraining in my chosen profession - just qualified. But I went up there and stayed for eight weeks getting her back up and running and caring for dad. So setting up my business took a back seat. And her care has not given me the space to get back on track at the moment.
But anyway - she IS so much better off and I'm convinced she knows that. She is now forgetting things from even a few hours ago and still doesn't understand her diagnosis. At times I feel so terribly sorry for her.
I think your mother is loading that guilt on you. But I honestly think you need that distance for your own sake and there's nothing wrong with that.
As for brothers - the next morning after the stroke I tried to ring. No answer. So I texted to say she was on a ward and being looked after. Nothing. I rang again but he wasn't very pleased as he was out shopping and informed me that his phone goes off at ten o'clock every night! He just doesn't want to know!
Your story of 'many women being your mother' and your knowing the effect is extraordinary. I wonder what kind of 'personality issues' wipe out a natural maternal instinct? Have thought the same here!
 

T1000

Registered User
Feb 3, 2022
130
0
Mum's dementia has crept up slowly. I had her looked at about five years ago - only couldn't attend the appointment through illness so my daughter took her - so my input over what had been happening wasn't there. Age related cognitive decline was diagnosed.
I started looking for homes then - we decided that although we knew she would hate it and we felt she would go downhill, at least she wouldn't be alone at home where she'd had a couple of small falls - where the food was moulding in the fridge sometimes - where she drove into the path of a lorry - where she was drinking far too much because she was depressed and very lonely.
But I couldn't get her to agree. My brother pointed out that she would hate being around others (such is her character) which is true. She is angry and picks holes in everyone and we both thought that when it came to it, it will be a disaster. She would just hate everyone.
We were on edge waiting for something to happen. So, when it did - she actually eventually accepted it and settled in the home in her way (with me visiting regularly).
Her humour is still there at times and she can 'pull people's legs'. Even if she will not admit it, I ABSOLUTELY KNOW she is SO much better in there. Even if she does herself secretly realise this, she would never say as much to me. She wants me to feel as bad as possible, and unfortunately I do at times. But I still KNOW i have done the best I can and I will carry on, although others say to visit less (at times I have)
She understands if anything happened to her there is help on tap. I have made her room look like her old home - lamps, pictures and paintings, ornaments etc.
She is the only resident who has her door firmly closed. But she joins others for lunch and has even started doing bingo and quizzes. Something totally unheard of!
She has taken a vehement dislike of some residents and I have been worried what she'll do (threatened to put her lunch over one poor woman's head). But all that seems to have a settled a little.
When she complains I do ask her what else could have been done? She will glare at me. I offer to move her to one of the care homes I had viewed. She glares some more.
She'd had a complete breakdown as my fathers illness became palliative. I had just spent four years retraining in my chosen profession - just qualified. But I went up there and stayed for eight weeks getting her back up and running and caring for dad. So setting up my business took a back seat. And her care has not given me the space to get back on track at the moment.
But anyway - she IS so much better off and I'm convinced she knows that. She is now forgetting things from even a few hours ago and still doesn't understand her diagnosis. At times I feel so terribly sorry for her.
I think your mother is loading that guilt on you. But I honestly think you need that distance for your own sake and there's nothing wrong with that.
As for brothers - the next morning after the stroke I tried to ring. No answer. So I texted to say she was on a ward and being looked after. Nothing. I rang again but he wasn't very pleased as he was out shopping and informed me that his phone goes off at ten o'clock every night! He just doesn't want to know!
Your story of 'many women being your mother' and your knowing the effect is extraordinary. I wonder what kind of 'personality issues' wipe out a natural maternal instinct? Have thought the same here!
Wow they might be sisters. My mum had ONE week in a care home and managed to go from being interested in one or two of the people there to 'hating' one of them, it was incredible. I think it's to do with rejection, if they get rejected in any way, they they shut down to that person or act up? I am glad your mum has settled and the bingo etc sounds like a miracle, I wonder if actually she is better and then when you come she puts on her grumpy self to inflict the guilt, or do the nurses support she is difficult?
Wow your brother not wanting to be interrupted shopping says a lot, complete detachment even then - what kind of relationship have they had in the past?
We had another incontinence issue last night, has gone from maybe 1 ever 2 months at night, to 4 in June alone. I don't think the alcohol helps, but in the past she had alcohol too and this did not happen. Due to sleeping pill she never remembers it. It's interesting that her ego is not present then, she is very different and vulnerable, it shows me how much her ego affects her usual social interations and our relationship even. Today she bought me a gift and said I am worth it, I felt appreciated and it was a nice moment, makes me wonder how many more there will be where she recognises me and I guess feeling a bit sad.
Anyway, neither of the care homes we contacted at the moment have a room, I need to keep in touch with them and poss contact a third option. I read on here about the fact some of them say the accept alz patients, or are 'specialists' but they can then kick the person out if they reach a certain stage and this scared the living **** out of me. I do not want her to be moving once she is in as it would be so stressful and to have to get to know and trust new people. Something about EPS I think, need to check each place for what behaviour they *won't* accept from a patient I think.
 

soguilty

Registered User
Aug 27, 2018
23
0
Wow they might be sisters. My mum had ONE week in a care home and managed to go from being interested in one or two of the people there to 'hating' one of them, it was incredible. I think it's to do with rejection, if they get rejected in any way, they they shut down to that person or act up? I am glad your mum has settled and the bingo etc sounds like a miracle, I wonder if actually she is better and then when you come she puts on her grumpy self to inflict the guilt, or do the nurses support she is difficult?
Wow your brother not wanting to be interrupted shopping says a lot, complete detachment even then - what kind of relationship have they had in the past?
We had another incontinence issue last night, has gone from maybe 1 ever 2 months at night, to 4 in June alone. I don't think the alcohol helps, but in the past she had alcohol too and this did not happen. Due to sleeping pill she never remembers it. It's interesting that her ego is not present then, she is very different and vulnerable, it shows me how much her ego affects her usual social interations and our relationship even. Today she bought me a gift and said I am worth it, I felt appreciated and it was a nice moment, makes me wonder how many more there will be where she recognises me and I guess feeling a bit sad.
Anyway, neither of the care homes we contacted at the moment have a room, I need to keep in touch with them and poss contact a third option. I read on here about the fact some of them say the accept alz patients, or are 'specialists' but they can then kick the person out if they reach a certain stage and this scared the living **** out of me. I do not want her to be moving once she is in as it would be so stressful and to have to get to know and trust new people. Something about EPS I think, need to check each place for what behaviour they *won't* accept from a patient I think.

Your mother's incontinence issues must be a massive strain on you on top of everything else. I hope there are more options for care homes for you to explore even if you have to widen the field a bit. Seems like a bit of a race against time in a way. I have everything crossed for you that something moves soon. I'm sure you have explored all avenues.
Funnily enough when my mother has had times of not being well she becomes very easy, in fact a joy to deal with as that anger and unpleasantness goes. As soon as she's better it returns though. Yes she becomes 'grumpy and angry' as a way of trying to inflict enough guilt to get me to give everything in my life up totally and go and sit in her room listening to her rant and rave. I hold the barriers, but in doing so she wins as I can't help but feel awful that I'm not there more often. Thing is - if she didn't do this I know I would be there more! And I do get there every five days or so.
My brother kept my parents very firmly at arms length for years. Their demise has brought him into close contact and he can't stand it.
Isn't it sad that a simple small display of affection from an ailing mother who normally withholds any normal caring feelings has such a profound effect? I hope you have more of those moments.
 

T1000

Registered User
Feb 3, 2022
130
0
Thank you, yes exactly she has become more pleasant and shown genuine care sometimes, I do feel it's because she can feel more vulnerability coming. There is frustration and anger from both our sides but for different reasons I guess, but we plod along.
Do you mean their demise as in your mum is not 'present' mentally, ie not passed away, and he can't stand he's in touch with you more?
I felt genuinely happy for a moment yes when she said that, it's like there's a barrier where we don't communicate well and it's nice when it comes down. I have learned not to be vulnerable often as she will usually ignore it and not help me through it or listen, focusing back on herself.
Have emailed one of the 2 care homes to keep us in mind, the other I will call, as they are abysmal coming back either by call or email, which worries me in itself.
 

soguilty

Registered User
Aug 27, 2018
23
0
Thank you, yes exactly she has become more pleasant and shown genuine care sometimes, I do feel it's because she can feel more vulnerability coming. There is frustration and anger from both our sides but for different reasons I guess, but we plod along.
Do you mean their demise as in your mum is not 'present' mentally, ie not passed away, and he can't stand he's in touch with you more?
I felt genuinely happy for a moment yes when she said that, it's like there's a barrier where we don't communicate well and it's nice when it comes down. I have learned not to be vulnerable often as she will usually ignore it and not help me through it or listen, focusing back on herself.
Have emailed one of the 2 care homes to keep us in mind, the other I will call, as they are abysmal coming back either by call or email, which worries me in itself.
Oh my brother has kept regular contact with me. It was when my parents began to fail and he came up against them and the situation closely that he couldn't/can't stand it. Mother has not really been 'present' in many ways as there is a mental problem there and now also dementia, and the ever present anger.
I SO understand the not showing vulnerability! This has always been the case for me too, even when my husband died when our daughter was five months old. I would never have broken down in front of them. What you say resonates so much - my mother will either be angry, or not address it, glare at me and talk about herself.
Large parts of our lives remain unknown to her as the support couldn't have been there and confiding would have made bad situations ten times worse.
Have you had any luck with care homes? I hope so!
 

T1000

Registered User
Feb 3, 2022
130
0
Thanks @soguilty for your comment. Still no news on the care homes, I emailed one but need to chase them Monday as nothing heard back , not even to say they got my email. But on the phone that one is always good. Social Worker has been, and started to say she would not personally recommend mum go to a home yet and that she should be more in a half way house. This is because mum fibs! I am right here and she tells the SW she knows how to operate washing machine/dishes etc etc and presents well in these meetings. I made clear my main concern is at night which mum has stuggled with lately and there is no night cover in this half way places. Mum truth be told wants nothing to do with independence in some ways, aside from being able to shop and go out. But wants all else done for her. How she would handle the many requests a day that I get for help I don't know. Think her anxiety would rocket and she would p*ss off any home manager at one of those places... not to mention how far away it would be compared to the ones here. But I do not want to affect her being able to make choices, she needs to decide for herself, it's offering independence but I would not be able to visit as often, whereas my sibling could. I can already see what me visiting 'only' once per week would be like, compared to when he does this currently when it suits even though he lives close...
 

JanBWiltshire

Registered User
Jun 23, 2020
160
0
I have been where you are. In the end, I decided I just couldn’t continue with trying care for my parents; furthermore, I admitted to myself I didn’t actually want to. They are both in a care home now and I can honestly say it was the best thing I’ve done for them - for all our sakes.

They were beyond making rational decisions and didn’t actually realise their needs were becoming more and more of a burden on me and on each other.

For the first time in four years, I have peace of mind. I visit and it is lovely knowing they are cared for. Admittedly, it has been hard getting them settled, especially my father, but I now have a life again.

I hope you can work out a way to move forward.
 

T1000

Registered User
Feb 3, 2022
130
0
I have been where you are. In the end, I decided I just couldn’t continue with trying care for my parents; furthermore, I admitted to myself I didn’t actually want to. They are both in a care home now and I can honestly say it was the best thing I’ve done for them - for all our sakes.

They were beyond making rational decisions and didn’t actually realise their needs were becoming more and more of a burden on me and on each other.

For the first time in four years, I have peace of mind. I visit and it is lovely knowing they are cared for. Admittedly, it has been hard getting them settled, especially my father, but I now have a life again.

I hope you can work out a way to move forward.
Thank you @JanBWiltshire yes we are def at that stage now. We have had a week off last year when she went away, and we had a couple weeks off at Easter, but that is all in 3 years so we are exhausted now. The good days are fine, the bad days are awful. I want that peace of mind I had when I knew I did not have to worry and I know I could then move on. The worry is in my body and at the back of my mind alot. I think you are right that she thinks her needs are fine and doesn't see how they have crept up over the years, though she does accept some aspects of course. How many places did you see, and how did you decide on a place for them in the end? It must have been very hard making the decision for both of them.
 

JanBWiltshire

Registered User
Jun 23, 2020
160
0
Thank you @JanBWiltshire yes we are def at that stage now. We have had a week off last year when she went away, and we had a couple weeks off at Easter, but that is all in 3 years so we are exhausted now. The good days are fine, the bad days are awful. I want that peace of mind I had when I knew I did not have to worry and I know I could then move on. The worry is in my body and at the back of my mind alot. I think you are right that she thinks her needs are fine and doesn't see how they have crept up over the years, though she does accept some aspects of course. How many places did you see, and how did you decide on a place for them in the end? It must have been very hard making the decision for both of them.
In a way, it ended up being very easy because, having suffered the roller coaster for four years, I suddenly realised the road ahead would get much, much worse. I didn’t want to wait for another crisis and wanted to involve my father in a calm decision, not a reaction to another step change. My mother was already in hospital and then moved to a care home so it made it a bit more straightforward to get my father moved.

I now visit and enjoy time with them both and I can sense my head space is much healthier because of it. I’m feeling well again, rather than fraught! I found it hard to put myself first and realise I can only be a help when they have the proper professional help they both need. I went today and they are in the right place and this journey’s end will ensure they have quality of care until the end. I wish you well in your decision.
 

T1000

Registered User
Feb 3, 2022
130
0
@JanBWiltshire that is great to know. I feel like I am in the eye of the storm sometimes, with work, childcare and general family life, plus helping mum. Of course she doesn't necessarily notice the things that are happening and that need doing, plus is faily well off, so can't see the impact of bills/inflation and also lack of time etc. I think that adds to the frustration for me. But lately has been ok, I just know we need a week off and am trying to find some respite locally but with no luck. The social worker is now suggesting more independent living which I really do not think will work too well but will leave them to work that out... I think you are right that when you get to a point when you are visiting and know they are truly being taken care of that must really take a load off.
 

soguilty

Registered User
Aug 27, 2018
23
0
Thanks @soguilty for your comment. Still no news on the care homes, I emailed one but need to chase them Monday as nothing heard back , not even to say they got my email. But on the phone that one is always good. Social Worker has been, and started to say she would not personally recommend mum go to a home yet and that she should be more in a half way house. This is because mum fibs! I am right here and she tells the SW she knows how to operate washing machine/dishes etc etc and presents well in these meetings. I made clear my main concern is at night which mum has stuggled with lately and there is no night cover in this half way places. Mum truth be told wants nothing to do with independence in some ways, aside from being able to shop and go out. But wants all else done for her. How she would handle the many requests a day that I get for help I don't know. Think her anxiety would rocket and she would p*ss off any home manager at one of those places... not to mention how far away it would be compared to the ones here. But I do not want to affect her being able to make choices, she needs to decide for herself, it's offering independence but I would not be able to visit as often, whereas my sibling could. I can already see what me visiting 'only' once per week would be like, compared to when he does this currently when it suits even though he lives close...
So how far does your mother have to go down, taking you with her, before the social worker will step in? Maybe the halfway house would be a sound idea - if being there demonstrated her needs are more than that then maybe they would take it to the next level. But I understand how worried and anxious it would make you feel. You seem to be between a rock and a hard place at the moment and chasing your tail. You must be absolutely exhausted.

Isn't it amazing how they can present themselves well when they need to? We had a care review with the manager last week following mother's diagnosis. She was a different person.

I thought my mother would also **** off the staff (and residents) in the care home. And while a bit of this has happened and I was worried they'd chuck her out, it seems they are used to dealing with ****ed off old people so they handled her well. Seemed to be water off a ducks back for them.
I now visit around twice a week and make the date for the next visit before I leave to try and calm her anxiety. It helps in some ways, but she seems to be going downhill mentally at the moment.
At least I can come back to my home and try to rebalance. You have it there all the time. I really feel for you.
I was in a conversation with a wonderful lady the other day. She was telling me how her parents failed. Both at the same time. They lived in Wales (we are both in Surrey). She was haring backwards and forwards - hospitals, carers, care homes. They died within six months of each other - then she cleared the house and dealt with the estate. All in all it was grim. The kicker? She has two brothers. They both live in Wales!
 
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Rex27

New member
Jul 4, 2022
1
0
Hi everyone,
I am finding this place so supportive and a relief, because you understand and can feel the pain, frustration, helplessness of caring for a loved one with this awful disease.
Mum is I feel at stage 4-5, living with us over 3 years now. She has always had depression, quite a negative outlook. She is angry to be in this situation, as could no longer live alone since her husband died. Day to day she is ok, still goes out couple times a week and carries out normal activities but has basically zero social life and will not make new connections, or even call the couple of people that might still interact with her.

The thing is, being the only one of her children who can care for her, I am the one who gets the brunt of the depression, like this weekend,. She had no issues telling me she has had enough, no longer wants to live, and wants to end it all. This has happened since I was 12, a vessel for her to offload into, usually done when no one else can hear her. Today she is a bit better and has gone shopping, but I am exhausted.
The feelings of helplessness I have and guilt, over being her main option, how do I resolve those?
I have taken her to care homes to have a look, she has stayed at one on respite, with the plan being to stay there when we went on holidays. Checked herself in then with sibling helping her, then an hour later, asked him to pick her up and she was on her own in our home. No one told us until we returned.

Now, a new care home she likes the look of, she wants everyone to arrange it then when it comes to making a decision on the date just to try them for a week, she seems to be hiding from it. I understand it somewhat as it must feel like the last Big Decision, and is very scary to feel like 'that's it'.
This level of stubborness though frustrates me, and if you talk to her about it her reaction will be tears, so you do not bring it up again. Aside from criticism and negativity, I rarely get any appreciation or help round the house, and I guess I am getting resentful for trying to do the right thing? She would be paying £4k a month anywhere else. My hubby has pretty much had enough and I feel bad still, were she more ilvolved, helpful, this would possibly work longer. But I just don't know what to do. If she is here, I am exhausted, if she is there, I will feel guilty, like I could have done more.
Hi everyone,
I am finding this place so supportive and a relief, because you understand and can feel the pain, frustration, helplessness of caring for a loved one with this awful disease.
Mum is I feel at stage 4-5, living with us over 3 years now. She has always had depression, quite a negative outlook. She is angry to be in this situation, as could no longer live alone since her husband died. Day to day she is ok, still goes out couple times a week and carries out normal activities but has basically zero social life and will not make new connections, or even call the couple of people that might still interact with her.

The thing is, being the only one of her children who can care for her, I am the one who gets the brunt of the depression, like this weekend,. She had no issues telling me she has had enough, no longer wants to live, and wants to end it all. This has happened since I was 12, a vessel for her to offload into, usually done when no one else can hear her. Today she is a bit better and has gone shopping, but I am exhausted.
The feelings of helplessness I have and guilt, over being her main option, how do I resolve those?
I have taken her to care homes to have a look, she has stayed at one on respite, with the plan being to stay there when we went on holidays. Checked herself in then with sibling helping her, then an hour later, asked him to pick her up and she was on her own in our home. No one told us until we returned.

Now, a new care home she likes the look of, she wants everyone to arrange it then when it comes to making a decision on the date just to try them for a week, she seems to be hiding from it. I understand it somewhat as it must feel like the last Big Decision, and is very scary to feel like 'that's it'.
This level of stubborness though frustrates me, and if you talk to her about it her reaction will be tears, so you do not bring it up again. Aside from criticism and negativity, I rarely get any appreciation or help round the house, and I guess I am getting resentful for trying to do the right thing? She would be paying £4k a month anywhere else. My hubby has pretty much had enough and I feel bad still, were she more ilvolved, helpful, this would possibly work longer. But I just don't know what to do. If she is here, I am exhausted, if she is there, I will feel guilty, like I could have done more.
Hi,

This is my first day joining this forum. First of all, I just want to say thank you. It’s so reassuring reading other peoples stories and experiences and knowing we’re not alone.
Reading your post, it could be like I am reading an account of my own experience. My mum has suffered with depression for all of my life and it means we really struggle to ever get mum to think positively. We try to explain that whilst life has dealt her a very cruel hand, there is so much other happy things going on around her she could embrace and enjoy but mum doesn’t see it like that. She focuses on her condition and dwells on it. I worry this is expediting the progression of her dementia as I have read depression can do that.
Also, mum can be so cruel at times and say such hurtful things. People say “it’s just her condition and she’s doesn’t mean it” but it’s so hard when it’s being said to you. Also, when mum has moments of being completely lucid in the middle of these rants you question how much of what she’s saying she actually means?? Much like you, I have grown up with mum saying horrible things to me, threatening me and telling me she wished I hadn’t been born. All these comments are coming back out again now 😥

We’re not at the care home stage as yet. We manage between us supporting dad and mum has carers who come in. However, I know there might come a day when we have to make that decision and we will all feel such huge guilt but like you, will be decision made from love based on what’s best for mum.

Keep smiling and remember, you’re doing amazing!! Xx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,480
0
Yorkshire
Hello @Rex27
A warm welcome to DTP

Good to read that joining us here is already helping and reassuring you

It's not easy to make the decision for a move to residential care ... it is made with and from love, for the best for the person ... I tend to use the word 'regret' rather than 'guilt'; I regretted that my dad needed to move to get all the support he needed but didn't feel guilty as I knew I'd done all I could and would continue to visit and support him ... you're definitely going above and beyond; I'm sorry your mum is in not position to understand that, it hurts ... You're dad must appreciate that you are standing by them both

Now you've joined us, keep posting ... maybe start a thread of your own?
 

T1000

Registered User
Feb 3, 2022
130
0
So how far does your mother have to go down, taking you with her, before the social worker will step in? Maybe the halfway house would be a sound idea - if being there demonstrated her needs are more than that then maybe they would take it to the next level. But I understand how worried and anxious it would make you feel. You seem to be between a rock and a hard place at the moment and chasing your tail. You must be absolutely exhausted.

Isn't it amazing how they can present themselves well when they need to? We had a care review with the manager last week following mother's diagnosis. She was a different person.

I thought my mother would also **** off the staff (and residents) in the care home. And while a bit of this has happened and I was worried they'd chuck her out, it seems they are used to dealing with ****ed off old people so they handled her well. Seemed to be water off a ducks back for them.
I now visit around twice a week and make the date for the next visit before I leave to try and calm her anxiety. It helps in some ways, but she seems to be going downhill mentally at the moment.
At least I can come back to my home and try to rebalance. You have it there all the time. I really feel for you.
I was in a conversation with a wonderful lady the other day. She was telling me how her parents failed. Both at the same time. They lived in Wales (we are both in Surrey). She was haring backwards and forwards - hospitals, carers, care homes. They died within six months of each other - then she cleared the house and dealt with the estate. All in all it was grim. The kicker? She has two brothers. They both live in Wales!
@soguilty oh my goodness makes you wonder what the hell the brothers were doing to not help at all. Poor lady.
Yes I feel ragged sometimes, it's not so bad now, but when her anxiety flares up it sets us all on edge of course.
Still no rooms available, and of course she is happy with the status quo and won't make any calls herself... in the interim I am not sure my hubby can handle much more and at least wants us to have 1 week off.
 

T1000

Registered User
Feb 3, 2022
130
0
Hi,

This is my first day joining this forum. First of all, I just want to say thank you. It’s so reassuring reading other peoples stories and experiences and knowing we’re not alone.

Welcome welcome, you are in the right place!
Reading your post, it could be like I am reading an account of my own experience. My mum has suffered with depression for all of my life and it means we really struggle to ever get mum to think positively. We try to explain that whilst life has dealt her a very cruel hand, there is so much other happy things going on around her she could embrace and enjoy but mum doesn’t see it like that. She focuses on her condition and dwells on it. I worry this is expediting the progression of her dementia as I have read depression can do that.
Indeed, depression takes its' toll and I would not be surprised if it brings on alzheimers, and also sometimes I wonder about cancer. My mum has had it twice. Negativity like this and sometimes meanness, must have a physical effect. I am not saying it doesn't happen to positive people too, but I feel there must be a correlation of sorts. I don't know about your mum but mine has never been able to maintain friendships, too opnionated and never backs down sadly, so now is alone aside from family and a carer. My siblings kind of hide, one visits but very short bursts even though is local. Ultimately, sounds like our mums are creating their own reality eh, and what I fear the most is that they will take this negativity and lock it in with themselves with the alzheimers. The only only silver lining I seeis that in those times of confusion, she is more appreciative and not too proud, or mean, and the ego retracts, maybe this will happen for you too? I am lucky that right now anyone chatting with mum would not really know she has alzheimers unless they are trained, so she has a somewhat normal interaction with people she meets for short conversation/shops etc. But I see the small details changing.

Also, mum can be so cruel at times and say such hurtful things. People say “it’s just her condition and she’s doesn’t mean it” but it’s so hard when it’s being said to you. Also, when mum has moments of being completely lucid in the middle of these rants you question how much of what she’s saying she actually means?? Much like you, I have grown up with mum saying horrible things to me, threatening me and telling me she wished I hadn’t been born. All these comments are coming back out again now 😥
Yes it's hard, I have not had many thankfully as she is still early on. But if she gets overhelmed or anxious, it's me that gets it in the neck and you cannot express yourself as she will then tell all and create things, so I find it easier to say nothing. She told me quite loudly to shut up once, when I was trying to help with the call she was on and she was avoiding their question, yet I am still expected to help when she is on calls otherwise she may double book something. Can't win.
We’re not at the care home stage as yet. We manage between us supporting dad and mum has carers who come in. However, I know there might come a day when we have to make that decision and we will all feel such huge guilt but like you, will be decision made from love based on what’s best for mum.
That is good, hopefully it can keep going as long as poss and keep good relationships with the carers going to give your dad and you guys a break. My mum initially likes them, then if they have any differing kind of opinion, or are not 'happy enough' to see her, it seems she then wants 'a change' and them to no longer be the main carer. A French lady on the go at the mo, she used to be very cheery when she started, and now when she arrives you can feel her energy is down, mum drains people sometimes! I have said she must try to keep the same person now to form a relationship so they really get to know her. Fingers crossed. As to care, yes it takes a long time to find a place and even then when you find one you like, they may now have a room. Plus I have discovered you need to be careful to check what behaviour they will *not* accept from a patient, as you need to know early on if they will turf your mum out eventually. I had no idea and learnt about it on here.

Keep smiling and remember, you’re doing amazing!! Xx
Thank you so much, it's nice to find a kindred spirit and we all go along as best we can, this place has been amazing.
 

soguilty

Registered User
Aug 27, 2018
23
0
@soguilty oh my goodness makes you wonder what the hell the brothers were doing to not help at all. Poor lady.
Yes I feel ragged sometimes, it's not so bad now, but when her anxiety flares up it sets us all on edge of course.
Still no rooms available, and of course she is happy with the status quo and won't make any calls herself... in the interim I am not sure my hubby can handle much more and at least wants us to have 1 week off.
Of course as we talk about our mothers and the difficulties, there is your husband also bearing the brunt of it. Sounds like he's been very supportive. Can't being easy having one's mother in law living with you, even in a good situation. All credit to him! A week off seems such a small thing to ask - really hope you manage to organise. I find even a small time away really helps to reset - hopefully will help you to feel less ragged. What would you do for that week?
I still have fingers crossed for you that something comes up soon care-home wise. So difficult as your mum is on the back foot so it must make you feel you are turfing her out.
Guilt is such a horrible emotion. At the moment I find I can't escape it. And can't find anyway to 'toughen up' against the constant emotional blackmail, even if I do know it for what it is. She is being so beautifully cared for - but, although she admits there was no other option, there is not let up trying to make me feel as guilty as possible. It's like a mission for her.
Phew. I have to say I have found venting here to be very cathartic.
I hope to hear you have organised a week away or a weeks respite for your mother - somehow. Even if all you do is batten down the hatches, clear your heads and keep the world at bay!
 

T1000

Registered User
Feb 3, 2022
130
0
Of course as we talk about our mothers and the difficulties, there is your husband also bearing the brunt of it. Sounds like he's been very supportive. Can't being easy having one's mother in law living with you, even in a good situation. All credit to him! A week off seems such a small thing to ask - really hope you manage to organise. I find even a small time away really helps to reset - hopefully will help you to feel less ragged. What would you do for that week?
I still have fingers crossed for you that something comes up soon care-home wise. So difficult as your mum is on the back foot so it must make you feel you are turfing her out.
Guilt is such a horrible emotion. At the moment I find I can't escape it. And can't find anyway to 'toughen up' against the constant emotional blackmail, even if I do know it for what it is. She is being so beautifully cared for - but, although she admits there was no other option, there is not let up trying to make me feel as guilty as possible. It's like a mission for her.
Phew. I have to say I have found venting here to be very cathartic.
I hope to hear you have organised a week away or a weeks respite for your mother - somehow. Even if all you do is batten down the hatches, clear your heads and keep the world at bay!
Thank you @soguilty . We did have a night away recently, and this was lovely, just hubby and I. To relax, take stock and recharge with some fun. Makes me realise we really do need the place to ourselves for a bit.

In addition, a very good friend who hurt me badly last year and ghosted me, has now texted to apologise. and that is all. Given she seemed to be choosing to end the friendship over text, to now get an apology a year later, by text, is beyond the pale. I am flummoxed as was literally heartbroken, it was a decade of friendship. I am just not wanting to get hurt again I guess and it's kind of ruined hubby and I having a night off. What makes it even harder is that this friend had a mum with alzheimers, and the friend also suffered from anxiety to boot, which I supported her so much with. At least I felt I did, was also there for her when her mum passed away etc, we were like sisters. I am so confused right now, like she wants to offload her guilt by sending 1 text.

Guilt seems to be mum's over riding choice of emotion too eh. I am used to it since I was young ha, doesn't make it any easier. I aspire to visit once or twice a week and my sibling help more. Tried the care homes last week, will call again this week and maybe add a third one, can't see the social work stuff happening fast. When you go see your mum, do you go for a walk, and talk, or are you inside? Do they provide some activities and an area for you?
 

soguilty

Registered User
Aug 27, 2018
23
0
Thank you @soguilty . We did have a night away recently, and this was lovely, just hubby and I. To relax, take stock and recharge with some fun. Makes me realise we really do need the place to ourselves for a bit.

In addition, a very good friend who hurt me badly last year and ghosted me, has now texted to apologise. and that is all. Given she seemed to be choosing to end the friendship over text, to now get an apology a year later, by text, is beyond the pale. I am flummoxed as was literally heartbroken, it was a decade of friendship. I am just not wanting to get hurt again I guess and it's kind of ruined hubby and I having a night off. What makes it even harder is that this friend had a mum with alzheimers, and the friend also suffered from anxiety to boot, which I supported her so much with. At least I felt I did, was also there for her when her mum passed away etc, we were like sisters. I am so confused right now, like she wants to offload her guilt by sending 1 text.

Guilt seems to be mum's over riding choice of emotion too eh. I am used to it since I was young ha, doesn't make it any easier. I aspire to visit once or twice a week and my sibling help more. Tried the care homes last week, will call again this week and maybe add a third one, can't see the social work stuff happening fast. When you go see your mum, do you go for a walk, and talk, or are you inside? Do they provide some activities and an area for you?
T1000 - just replied to you and somehow lost it! Ah well!

Am so glad you had a night away. I have found it to be so self affirming to have even a small break from the stress. I just spent a week away at the Hay Festival in Wales. Mother didn't know (what she doesn't know she can't be angry about). It was SO wonderful. My brother rang mother and msgd me to let me know she was ok - and said to have a good time!!! Wow!

A few years ago, when mother was still in her home in Norwich and my brother and I were haring up and down the country from opposite ends and constantly phoning, I attended a conference, in a professional capacity, for a week in America. I remember flying home feeling so completely chilled, so quietly relaxed, so deeply immersed in the whole week, then, in a revelation, I completely realised that to a huge extent I was calm because I hadn't spoken to mother with the ensuing constant emotional blackmail, or actually even thought about her. I think I then realised how constantly worrying about her welfare was affecting me on all levels, all of the time, 24/7.

I am really sorry to hear about your friend. It's the very last thing you need. You had supported her so well and completely. And she has been where you are now! Difficult when friendships fail. Perhaps it will even out. But for now you have more than enough on your plate to cope with I think.

So - when I visit mum I take her out if at all possible. She can leave her room - but usually doesn't choose to do so, (although rarely may) instead being in there with the door firmly shut.
I take her out in a wheelchair around the village. Initially, when I suggest it, she will glare and growl, shout NO, then grudgingly, angrily, agree, glaring and blinking at me. I admit I sometimes feel so exasperated I want to just leave. Sick to death of insisting. But, once I get her into a wheelchair and we're off - she loves it - seeing the outside and new perspectives. Also I find it much easier to chat when there is so much to see. However, I have to be very careful not to chat too closely with anyone who we may meet as mother will be furious 'This is OUR time'.
Afterwards I can drive away feeling she may feel a little better knowing she's enjoyed the outside and nature.

I feel I am dragging her along in the last part of her life as her negativity precludes her being able to make any positive decisions, however small. Then she resents I am helping her. It's totally exhausting. I finally and sadly accept that I can't make her anymore content. This had been said, but I was convinced I could help her. No. I accept defeat on that score.
T000 I think you and I have had difficult relationships with our mothers - yet we still do everything we can. It has been said to me that I owe her nothing - but, she is my mum!

When, on a visit, I see her at a distance, before she begins with her angry, vitriolic nonsense, there is a tiny, stooped, anxious, angry, glaring, increasingly confused, little person, unable to see the the up-side of anything. I really find it unbearably and dreadfully sad and often have to steel myself. I feel terribly guilty (here we go again) that I can't change anything positively for her. I guess that's why (and maybe you too) keep doing everything possible.
 

T1000

Registered User
Feb 3, 2022
130
0
The Hay festival sounds fab! I hope you have some things lined up for you. I have booked another night away with hubby later in the year, and we are planning our Aug staycation, though hoping mum will be at least on a week's respite then.
You are so right that one doesn't realise the weight of the care until we don't have to do it.

Sounds like your mum really benefits from those walks and is actually jealous if anyone talks to you too long, so in her own way, maybe that is showing love. Mine is similar, no overt signs and actually gets quite down on things like I recently made my little one a birthday cake, things I suppose that should be normal but to her are not.

Today I have asked mum not to go to an appointment, as it's unecessary in this heat, I feel it can be postponed. She then rings them and asks if they can confirm the appointment (not I can't make it, can we reschedule). She had a seizure a few weeks ago, and I am just worried, but she is still able and so stubborn. Even a national emergency will not stop her doing what she pleases, regardless of me worrying. So like you, I seem to worry pointlessly but I do it out of love.
That is so sad but positive that you can see her non-ego self just before it emerges - and you write very well I can picture it exactly as you have written it. I see that too when mum is asleep, or sometimes in a day a positive moment. I am scared how much she limits her life, to the point that in 3 years she has not met one friend in the UK. No one is suitable enough - one lady was too rich, others are too poor, and even if they are on an even keel, she will say oh they don't have kids, so I can't relate to them, or oh they live in another area.

As to that friend, yes I was crushed, truster her implicitly like a sister and she ghosted me. Turns out her recent text was a way of relieving her conscience and that seems all she was planning to do as we will see eachother around in the new school year. I feel like an idiot that likely I would have still forgiven her even now a year later, I had a little hope she would be very remorseful and we could meet. But she is a coward even now just sending 1 text. In childhood I always accepted bad treatment to get love, tried too hard, fearing being rejected, and it would be I imagine a version of that that happened with this friend so I need to learn from it. But in many ways I am strong, this one I am not.

Must call the care homes again, would love for mum to have a week somewhere, it would help hugely and she might join in a few things.
 

soguilty

Registered User
Aug 27, 2018
23
0
The Hay festival sounds fab! I hope you have some things lined up for you. I have booked another night away with hubby later in the year, and we are planning our Aug staycation, though hoping mum will be at least on a week's respite then.
You are so right that one doesn't realise the weight of the care until we don't have to do it.

Sounds like your mum really benefits from those walks and is actually jealous if anyone talks to you too long, so in her own way, maybe that is showing love. Mine is similar, no overt signs and actually gets quite down on things like I recently made my little one a birthday cake, things I suppose that should be normal but to her are not.

Today I have asked mum not to go to an appointment, as it's unecessary in this heat, I feel it can be postponed. She then rings them and asks if they can confirm the appointment (not I can't make it, can we reschedule). She had a seizure a few weeks ago, and I am just worried, but she is still able and so stubborn. Even a national emergency will not stop her doing what she pleases, regardless of me worrying. So like you, I seem to worry pointlessly but I do it out of love.
That is so sad but positive that you can see her non-ego self just before it emerges - and you write very well I can picture it exactly as you have written it. I see that too when mum is asleep, or sometimes in a day a positive moment. I am scared how much she limits her life, to the point that in 3 years she has not met one friend in the UK. No one is suitable enough - one lady was too rich, others are too poor, and even if they are on an even keel, she will say oh they don't have kids, so I can't relate to them, or oh they live in another area.

As to that friend, yes I was crushed, truster her implicitly like a sister and she ghosted me. Turns out her recent text was a way of relieving her conscience and that seems all she was planning to do as we will see eachother around in the new school year. I feel like an idiot that likely I would have still forgiven her even now a year later, I had a little hope she would be very remorseful and we could meet. But she is a coward even now just sending 1 text. In childhood I always accepted bad treatment to get love, tried too hard, fearing being rejected, and it would be I imagine a version of that that happened with this friend so I need to learn from it. But in many ways I am strong, this one I am not.

Must call the care homes again, would love for mum to have a week somewhere, it would help hugely and she might join in a few things.
Do you know my mother has never made friends either. Always something wrong with them. Isn't that sad - for both of them? It also means that all the focus is on you/me. If mum could relate to other people and take simple pleasure in their company it would be wonderful for her and broaden her outlook. She just regards everyone with suspicion.
When she lived in her house she complained bitterly about the isolation. She would only leave the house once a week to drive (dear god) to the nearby supermarket to shop. She would sit and shake with anxiety for half an hour before going there. Then she would say she felt better because there were people there. However, she would shop as quickly as possible and rush home and seal herself back in the house and start to drink.

However I absolutely KNOW she has a lovely time with some of the staff in the care-home. I see her pull their legs. I know she is surrounded by people. She has even joined in a few things which I couldn't believe! Even bingo - something she would never have considered (too working class). But, when I arrive she will frown and look very sad and say 'Oh NOW I have someone to talk to!' She would never say 'Oh I had such a laugh with so and so!' 'Oh the staff here are really wonderful!'
I bet, like me, you'd give anything for a little positivity to lighten it all. Just a little! And her just trying to do that would draw me in so much more. I really would want to see her so much more if that was the case. Instead I hang back. Sometimes I think that's unforgiveable. Guilt.

My daughter came up to see mum. We spent the night before at a pub by the Thames and had a good catch-up, where she told me in no uncertain terms that she regards her grandmother as having been abusive towards me for years. And was so supportive to me in what I'm trying to do. It changes nothing - but that understanding also changes everything!
A bit like being on here really!

Your mum did nothing to help herself with that appointment. You're the voice of reason - but it seems she will go against that, bringing you more worry.
We are the sandwich generation - worry about our kids - worry about our parents. How old is your little one?

Aug staycation - wonderful. And not too long away! I really hope it comes off! The simplest pleasures when the pressure of what you're going through are HUGE!