Is mums depression linked to her memory problems/dementia

[annielou]

Thanks @Pete1 got an appointment at gp this morning though don't know what going to say or do today.
Mum had terrible night constantly gettin up n askin me not to leave her n muttering to herself and looking in drawers for things.
Mum is on pension credit so wouldn't be self funding. She is scared to be on her own and is unsure of her bungalow a lot of the time at moment.
She has agreed to come doctors today though doesnt really know why and what going to do but thinks they will put her in home and worries wont be nice. While also asking if can come through to my house after doctors today

 

[Pete1]

Hi @annielou, sounds like an extremely stressful situation. See how the GP visit goes, assuming there is no underlying infection, I would expect he may do some simple memory tests on Mum and refer to the memory clinic for formal diagnosis. Let us know how you get on.

If Mum isn't a self-funder then you need to get Social Services to undertake an assessment of needs which should also help to determine the care pathway moving forward.

 

[Rosalind297]

Hi @annielou, I too care for a mother who has depression and, most particularly, anxiety as well as dementia and I have resisted the care home option for years due to her fear of what it would be like.

My caution to you, however, is to act more quickly than I have as your Mum’s reliance on you will grow and grow until it becomes all consuming and, because you are a loving, caring and empathetic daughter, you will subsume your life into hers to your significant detriment. It can go on for years. Take it from someone who knows!

It sounds as if both our Mums have old-fashioned attitudes towards residential care, when, in fact these days, the majority cater superbly for the needs of the PWD - they have plenty of activities on offer to occupy the PWD (if they want them), good quality food, kind and professional carers etc.

I know it is frightening and upsetting and you will feel like you are letting your mother down but for her sake and yours, not to mention your own family, please start the ball rolling with Social Services to get an assessment and care package. They will do everything possible to keep her in her own home so she won’t have to face the prospect of going into care just yet. But when the time comes, difficult as it seems from your current position, you will find a lot of solace in knowing that she is safe, has company 24/7 and her needs are met.

Good luck and keep us up to date with progress.

 

[annielou]

Thanks @Pete1 and @Rosalind297 Yes Rosalind our mums do sound like have similar old ideas about homes. Mum is scared of them.
Unfortunately I'm not sure she'll be able to stay in her home even with carers as she's so scared of being alone now and carers won't be there at night and I'm not sure she can live with us due to stairs etc and I can't stay with her at her house indefinately, last night I slept on sofa cushions on the living room floor. I will take over our fold up bed tonight and more clothes etc for me to stay with her but it's not ideal as mum lives in small 1 bed bungalow and I'll have to keep making bed up in living room for me. Also I've not had chance to check fully but I'm not sure she'll be able to stay in house long term as it's an almhouse and I'm pretty sure when moved in it said it's not for people who need long term care. Also last night she kept shouting me from bedroom as well as getting up which most likely woke neighbours as you can hear quite a lot through walls so they won't be happy if that carries on long term. Also on a selfish note not sure i can go on with nights like that as well as constant questions and attention during the day.
The gp was very nice today but he hasn't really moved things along any quicker so I'll still have to be staying over at mums for the time being as she doesn't want to be alone and still confused about where lives and what she does with herself.
We did at least get her test results from last weeks blood tests and hopefully he'll have made note on mums records about what has happened lately and some more of her symptoms I got to tell him about today that I didn't get chance to mention at first appointment.
She doesn't have any infections but is low in folic acid, vitamin D and vitamin B12 he said she looks a bit anaemic so has had another blood test today to check iron levels as they werent previously checked.
He has given her tablets for folic acid and vit D and we booked in for 6 B12 injections every other day in a few weeks time.
I told him some symptoms have been happening for ages, a couple of years but she has only just agreed to go because she is scared they'll put her in a home and also keeps changing her mind about going. I told him things had got much worse the last few months and then the last few days worse again.
Told him about her ringing upset and confused yesterday morning and still being confused through day and last night not wanting to be alone, her not recognising house and been up n down all night and has been saying she wants to die because she can't be alone and doesn't want to go in a home. I said I had to stay at hers as couldn't leave her on her own and I have stairs at mine and she's very wobbly on them.
He asked mum what she remembered about yesterday and she said she thought she'd been ok and had been at my house all day. (we'd been at hers)
Talked to her about eating which mum keeps saying is because she lives alone n you can't be bothered when just you so I told him sometimes she forgot how to make dinner and that she doesn't eat much when eats with us either. I told him she's barely eaten since had constipation/upset tummy bout about three months ago and never finishes anything and, just tiny amounts, it's since then she's not been doing much and is wobbly when standing.
He weighed her and used weight from health check she had in early 2018 when she weighed 75 kilo, he didn't say what weighed now just that she had lost a lot of weight, but I could see dial was below 65 so must be over 10 kilos in 18 months and most of that will have been in last 3 months . He also tested her balance which he said wasn't great, it could be down to her not eating properly and being low in vitamins.
He talked to mum about general health and then about what low in and what he wanted to do. Said the b12 can contribute to confusion and forgetting so may feel better after injections.Could be causing it or could be making her worse. He still wants her to have memory tests so keep Mondays visit with memory nurse and Tuesdays gp visit there so can check her iron from todays blood test and check up on her again see how doing.
Told her not to worry about going in a home she was still in charge and it was still up to her so not to dwell on it.
Its been a very long morning as left mums at 9.30 for 10.10 appointment but had to wait as he was dealing with an emergency so was an hour late seeing us. Then we had to wait downstairs for blood test and make appointment with nurse about b12 so it was 11.45 when we left doctors then we had to collect perscription which we also had to wait for so was half past 12 by time we got in.
We're both totally shattered now, mum has shut her eyes for ten minutes a few times bless her and the rest of the time she keeps asking does she have to go back to doctors, did she have to take some tablets, will I remind her to take them and when to go doctors.
I hope she settles better and we get some sleep tonight.

 

[Pete1]

Hi @annielou, what a stressful day for you, I know that always made me feel quite sad at the end of such a visit, you come to realise how far your loved one has declined and how the roles have reversed. I remember now that Mum had an iron deficiency too and had lost a lot of weight, and was increasingly unsteady and weak on her feet.....the supplements didn't sadly improve her memory issues (although her weight loss was also due to another underlying condition) but did improve her overall physical strength. I think the memory tests are crucial for you to move forward. It certainly sounds as though the current situation is unsustainable, and you will end up poorly yourself through the stress, worry and lack of sleep. Did the GP mention any thing about care support to you?

 

[annielou]

@Pete1 no he didnt suggest anything to do with care, maybe he's leaving that to either memory nurse on Monday or whichever doctor we see on Tuesday. I definately think I need to bring it up with one or both of them as don't think I can carry on alone long term.
I'm not holding out much hope the vitamins etc will improve mums memory but hopefuly they may help her general health a bit maybe.
She went for a health check early 2018 and no bloods came back with anything low or as a problem then and she was already starting to forget things and get mixed up and angry about it before then so think the memory problems pre date the low levels.
I was under strict instructions at the health check in 2018 not to mention anything about her memory and she fibbed and told the nurse she wasnt worried about it. I wish she hadn't and we'd been able to start sorting things then but she wouldn't let me say and wouldn't herself.

 

[Pete1]

You are right @annielou you can't carry on as you are, something has to give and everything at the moment is on your shoulders, and it's a heavy load to carry. Hopefully your Mum may have some clearer 'independent' guidance next week, although in my experience they won't say very much, other than some more support is needed and the likelihood is that whatever is said will be forgotten very soon. Difficult though this is to say, you probably now need to think about what you are going to do next week regarding Mum's future care arrangements and start planning now....perhaps give Social Services a call tomorrow. I know its a seems a big step but you need to engage now for you and Mum, it will take a while for them to come out and assess so arrange it now and cancel later if needs be.

 

[Rosalind297]

Thanks @Pete1 and @Rosalind297
Also on a selfish note not sure i can go on with nights like that as well as constant questions and attention during the day.


He has given her tablets for folic acid and vit D and we booked in for 6 B12 injections every other day in a few weeks time..

First off, you are NOT being selfish. This is how it starts - feeling guilty because you find it difficult to put up with an unsustainable situation. Bit by bit you come to compromise and “just get on with what needs to be done” and the next thing you know, you’ve been sleeping on cushions on the floor for a year. I’m coming up to my 8th year! Just be careful.

Secondly, my Mum has pernicious anaemia so has B12 injections every 10 weeks. She has a lot of balance problems when the next injection is due and I know from personal experience, having been drastically iron-deficient and then Folate deficient (so much so I was investigated for leukemia) and I can assure you that the mental and physical problems it causes are dramatic. You might find a significant improvement in her well-being when she has her metabolism back on track.

But nevertheless, start the Social Services involvement as soon as you can.

 

[annielou]

Thanks @Pete1 and @Rosalind297 xx Thanks for the advice re social services. I think that's a good idea, I'll talk to my sister and we'll contact social services ourselves. Sister lives 3 & 1/2 hours away so isn't here day to day but I keep her up to date on whats happening and she should be involved in decisions.
@Rosalind297 Hopefully the tablets and injections will help her a bit then. Anything that makes her feel a bit better is a bonus as it's awful to see her as she is at the moment. You must be exhausted caring for your mum , 8 years is a long time, I'm not sure I can last that long.

 

[annielou]

Mum had home visit from Memory nurse today, she was here about an hour and half. She was very nice, she talked to both of us and asked bit of history how long been,if gradual, few examples, including forgetting her house, age, what did etc and things mum struggled with day to day.
Mum said she thought had been couple years but she wasnt that bad until recently, which i was surprised at as mum often acts like new thing. Quite a few of the things she asked about mum didnt think she did but I did.
We talked about how often I came over or saw her and that I had stayed over here when mum rang distressed last tuesday at 6am and that mum hadnt been alone since then as I stayed here tuesday wednesday my sister came down and stayed thursday friday and I'd stayed saturday sunday. Mum said she didn't know and didn't think she'd asked us to.
Talked about mum ringing a lot asking same questions and asking me to come over. And about the episodes when she'd rang panicked and we'd had to come over to be with her as so confused.
Told her how mum gets up a lot in night and mutters about not knowing where is and what to do and most nights has an hour or so where wont settle and searches for something. Mum seemed to think that this was ok even though said didn't realise had done it. Nurse tried to suggest to mum that not good for me.
Talked bit about medical history and mum being very low in her mood. Nurse said they usually suggest speak to gp who may prescribe anti depressants so as we're going tomorrow mum should mention it.
Then she asked mum few questions bout past her family, job etc mum got few bits ok especially old stuff but got few things wrong too or struggled answer some things and was asking me but nurse sed I'd fill her in at end. Then memory nurse asked me how mum did and I told her differences.
She gave me questionnaire to fill in in bedroom while she sat with mum and did tests. Mum said afterwards she was rubbish at it and used to be clever, nurse said she still was clever and had got some and not to worry. I dont know how she did do.
During visit nurse talked bit about mum trying do stuff herself or to get outside help and not rely on me as much but every idea she suggested mum was negative about. Mum said didn't want to go in a home, nurse said wont do that then later said mum didn't meet criteria and unless paying for herself the ss would be reluctant put her in home. She mentioned sheltered housing where other people about and staff there till evening. Mum said didn't know still had them but also wasn't keen. I'm not sure if good for mum anyway as still wont solve her being scared of being alone and disturbed in night.
She also suggested going to ageuk day care to mix with others, that they had special memory sessions but mum didnt want to, she talked about occupation therapist coming and seeing what mum could do and suggest things help or if mum needed help doing things and that maybe mum could get carers to come so I didn't need to be there all the time but mum said didn't want people coming in and didnt need them. She was happy with me and hubby.
Nurse asked mum what would happen if i was ill and couldnt come and mum said my hubby would. She asked what if weather bad and snowed in so cudnt get there. Mum said we would but nurse said what if they cant? so mum said would call lady she knows down road.
Mum kept saying how good I was and liked being with me.
I asked if mum would agree to some help like carers how did i arrange that dud they sort it or did we have to do it ourselves. She said they didnt arrange or suggest care social services did that. We'd have to arrange that and they assess if eligible for help and if not paying herself how much got. She said they had OT on their team who could see what mum could do round house which i said i'd like but as mum had said didn't want people coming I don't know if will arrange it.
I found it quite uncomfortable talking about things in front of mum like I was telling on her and complaining. Mum didn't think did half things I said but wasn't angry with me like was at first gp visit but she was still adamant doesnt want any one coming in or putting in a home.
I got bit upset towards end when talking about being there all time and mum saying didnt want anyone else and also after nurse went I was bit upset and dissapointed with mum.
Mum asked afterwards why nurse had come a few times, she'd asked nurse while there too, seems to have forgot gp visit, she asked if coming back and what was happening next, what are they going to do?
I told her about rest of appointments and hopefully get diagnosis at clinic appointment next month and mum said and then will they put me in a home, I said no nurse told you wont do that. So mum said what will they do then they'll have do something. I said but you don't want anything, any people coming to help or to go anywhere. So she said but what will do then?
I'm not proud of this but as I say I was dissapointed and upset. So i said as you keep telling people you don't want or need any help then we won't get any and we'll just carry on as we are, me doing it all untill one of us ends up having a nervous breakdown and ends up in hospital.
After that its been an up and down day with times mum has wanted talk about it and wanted help and times when forgot why nurse came or that she even came aswell as forgetting why I'm staying here.

 

[Pete1]

Hi @annielou, firstly don't feel bad for what you said. I think many will totally identify with the scenario you have described - the fear of going into care, and the reticence to have any 'strangers' in the house .....rather rely on existing support more and more i.e. you. This is quite common, so you aren't alone and many have dealt with before, albeit in different ways. Personally I applied for attendance allowance for Mum which I then used for personal care, cleaner and gardener, as I could no longer cope on my own with a full time job. I arranged it and told Mum what we were doing. She actually came to enjoy the gardener and cleaner visiting. Unfortunately your Mum is in denial, this may change with diagnosis or remain the same (more likely). But what you are describing is an unsustainable situation for you really. I would suggest speaking with Social Services as it does sound like you really need some help. Take care of yourself and keep posting.

 

[annielou]

Thanks @Pete1 for your teply x
we are going to contact social services and sister has been in touch with a care agency (the one advertising on tv lately) and is going to look at claiming attendance allowance for mum to pay for carers too. Unfortunately now I'm staying at mums its hard for me to look things up just on my mobile or ring people for info as mum constantly wants to know what I'm doing and gets annoyed if doing anything that she thinks takes my attention off her, so sis is having to do most of that sort of stuff long distance and text me info which i have to look at surreptitiously.
Had a dissapointing visit at gps yesterday (moaned about that on seperate post) where she totally ignored us telling her how low mum was and just perscribed iron tablets for mum to take as iron is low like last gp suspected. They need taking after meal, when full so dont itritate stomach but mum eats so little they'll probably irritate hers and she'll just feel worse than now. Gp didn't listen to abything mum me or hubby said about eating ir mood just kept on about must eat and take tablets so it was another frustrating day.