Who am I ? I won't know myself soon!!!

deepetshopboy

Registered User
Jul 7, 2008
238
Hi ive read your post about your mum and worried she might start wandering which rungbells with me when i went home again for the 2 nd time I installed cameras amd a door sensor ( careline in my area do one that attaches to
Door that can be set up at cerain times ) but my sin bought one snd did it fir me on my dads door thank god i got it as i never would have know he was gojng out at night as far as my knowledge he went out 3 times in the night once saying he was in danger he was going get ‘ stabbed ‘ that trigggerd me dropping everything and saying he cant be left by himself at night anymore but id be so guilty and upset if he dod go
Missing at night and something happened to him
Have a think about door sensor you might need them now x
Did the social services help
With getting carers or daycentre for your mum to give you respite? Do you think your mum will settle in a daycentre or what about a befriender to come in or companion to maybe take her shopping or cafe /walk 3 hours a week to give you respite
X
 

DesperateofDevon

Registered User
Jul 7, 2019
2,564
Having read your forum posts from the beginning I can see how far you have come & developed strategies. This illness is a cruel mistress & everyone experiences & deals with it differently. It’s an fluid situation & you are Bobbing along with it. take care
((((((Hugs))))))
 

imthedaughter

Registered User
Apr 3, 2019
155
Everytime mum has to go to drs, hospital, opticians she thinks she should have an appointment card bless her. No amount of telling her we did it online or over phone and everything is on computer now so dont need a card will settle her, even when we have appointment letter sent in post from hospital she still thinks it should be a card or she hasn't got an appointment. I am thinking of printing off some cards saying appointment and writing down day and time when we next have an appointment and showing her that. Could be a bit embarrassing when she wants to hand it in to them but it may help, or then again she just might keep asking as many times anyway and I'll have to keep showing her card but it may be worth a go.
You can buy a pack of 100 appointment cards on Amazon, might be worth the money just to hand one over whenever she thinks she needs one! https://smile.amazon.co.uk/Appointment-Reminder-Business-Therapist-Hairdresser/dp/B07Z3CRWYF/ref=pd_aw_sbs_121_5/261-4784521-0963703?_encoding=UTF8&pd_rd_i=B07Z3CRWYF&pd_rd_r=b3b92eb4-1eb9-40fa-9146-336afb3c38ae&pd_rd_w=McHQK&pd_rd_wg=Wna2E&pf_rd_p=0208d703-a674-4413-8899-c3889837d212&pf_rd_r=KXGB9FCF4NR2TDE200P0&psc=1&refRID=KXGB9FCF4NR2TDE200P0

Also all the worrying about money etc reminds me so much of when Dad was living independently and when he was settling in the home. Constant calls and some awareness of what was happening but a lot of confusion. That has calmed right down now he's settled in the home.

Hugs to you!
 

annielou

Registered User
Sep 27, 2019
489
Yorkshire
Thanks you for your replies @Bikerbeth @Woohoo @canary @deepetshopboy @DesperateofDevon xxxxx
I do think mums worrying has been coming back more through this week but as she is still a bit calmer than before it is slightly easier to cope with. She has been quite calm today, even the supermarket trip which is usually a trying time went a bit smoother today.
She had a bit of upset tummy this afternoon (she gets them fairly often, ongoing bowel problem) which she panics about and always wants to go home and take loads of immodium which then bungs her up for a few days. We suggested she wait half an hour in case needed to go on way home and it might go off so she could stay then anyway. She agreed and only took one immodium just in case and luckily it did go off and she soon relaxed and stayed the rest of the afternoon and didn't go home until after tea about 7pm. She called me friends name a couple of times today but quickly went back to realising I'm Andie.
She did have a few worries around where she lived during the afternoon and when we were taking her home as she couldn't remember where she lived and was mixing up her addresses. We told her no need to worry we knew where it was and she'd recognise it when she got there and although she went back to it a few times she was a lot calmer about it than previously.
When we got to mums and were putting her shopping away she lost her house keys and was a bit worked up trying to find them, so hubby and I kept saying don't worry we'll find them they must be in the house and after a few minutes I found them in her knitting bag she had brought in with her. She also got a bit mixed up about a couple of other things but she didn't get aggressive about any of it and was easier and quicker to calm.
We stayed for about half an hour before we came home and she seemed ok when we left and also when I rang to say I was home and she hasn't rung in the couple of hours since so I'm hoping she will have an okay night.
I do hope that the worrying doesn't get much worse and she feels calmer, I hate to see her upset and confused. I know with dementia that is inevitable but I love mum to bits and we all want to spare our loved ones hurt and upset don't we.
I'm going to give the appointment card idea a try, thanks for the encouragement, if mum keeps asking next time we have appointment at least I can show her and even give her a card which may at least stop the do we need to go today and the will it be open now questions, even if she keeps on checking time etc, which I'm sure she will, it might just help a little to show her a card. I think sometimes she worries we're just turning up uninvited and other times she thinks if we've not got a card its not official and we can just go when we like so could go later.
Thanks for the link @imthedaughter I'm ordering them tonight :)
@deepetshopboy we got careline panic button and door sensor a bit before christmas via council, mum won't wear her panic button and often asks what the receiver box is and says she doesn't want it but so far she hasn't insisted we send it back. The door sensors will alert control room if go off overnight but not during day but I feel its worth having them just in case but worry about her going out in day when I'm not there too.
Sw has said she will sort a day at day centre and refer mum for a volunteer befriender visit and contact care agency for carer visits but they may all take a while.
x
 

Woohoo

Registered User
Apr 30, 2019
682
South East
you are dealing with it all so well @annielou , a lot of people couldn’t have done what you are doing . Hope the appointment cards work well and that you get a good nights sleep and tom an ok day . Take care . X
 

DesperateofDevon

Registered User
Jul 7, 2019
2,564
Thanks you for your replies @Bikerbeth @Woohoo @canary @deepetshopboy @DesperateofDevon xxxxx
I do think mums worrying has been coming back more through this week but as she is still a bit calmer than before it is slightly easier to cope with. She has been quite calm today, even the supermarket trip which is usually a trying time went a bit smoother today.
She had a bit of upset tummy this afternoon (she gets them fairly often, ongoing bowel problem) which she panics about and always wants to go home and take loads of immodium which then bungs her up for a few days. We suggested she wait half an hour in case needed to go on way home and it might go off so she could stay then anyway. She agreed and only took one immodium just in case and luckily it did go off and she soon relaxed and stayed the rest of the afternoon and didn't go home until after tea about 7pm. She called me friends name a couple of times today but quickly went back to realising I'm Andie.
She did have a few worries around where she lived during the afternoon and when we were taking her home as she couldn't remember where she lived and was mixing up her addresses. We told her no need to worry we knew where it was and she'd recognise it when she got there and although she went back to it a few times she was a lot calmer about it than previously.
When we got to mums and were putting her shopping away she lost her house keys and was a bit worked up trying to find them, so hubby and I kept saying don't worry we'll find them they must be in the house and after a few minutes I found them in her knitting bag she had brought in with her. She also got a bit mixed up about a couple of other things but she didn't get aggressive about any of it and was easier and quicker to calm.
We stayed for about half an hour before we came home and she seemed ok when we left and also when I rang to say I was home and she hasn't rung in the couple of hours since so I'm hoping she will have an okay night.
I do hope that the worrying doesn't get much worse and she feels calmer, I hate to see her upset and confused. I know with dementia that is inevitable but I love mum to bits and we all want to spare our loved ones hurt and upset don't we.
I'm going to give the appointment card idea a try, thanks for the encouragement, if mum keeps asking next time we have appointment at least I can show her and even give her a card which may at least stop the do we need to go today and the will it be open now questions, even if she keeps on checking time etc, which I'm sure she will, it might just help a little to show her a card. I think sometimes she worries we're just turning up uninvited and other times she thinks if we've not got a card its not official and we can just go when we like so could go later.
Thanks for the link @imthedaughter I'm ordering them tonight :)
@deepetshopboy we got careline panic button and door sensor a bit before christmas via council, mum won't wear her panic button and often asks what the receiver box is and says she doesn't want it but so far she hasn't insisted we send it back. The door sensors will alert control room if go off overnight but not during day but I feel its worth having them just in case but worry about her going out in day when I'm not there too.
Sw has said she will sort a day at day centre and refer mum for a volunteer befriender visit and contact care agency for carer visits but they may all take a while.
x
This might be a silly idea but could you wear a badge with your name on it? it just might help your mum cognitively- maybe worth a try. I’ve thought this several times when reading your posts. Dad read name badges & that triggered some cognition.
 

deepetshopboy

Registered User
Jul 7, 2008
238
Thanks you for your replies @Bikerbeth @Woohoo @canary @deepetshopboy @DesperateofDevon xxxxx
I do think mums worrying has been coming back more through this week but as she is still a bit calmer than before it is slightly easier to cope with. She has been quite calm today, even the supermarket trip which is usually a trying time went a bit smoother today.
She had a bit of upset tummy this afternoon (she gets them fairly often, ongoing bowel problem) which she panics about and always wants to go home and take loads of immodium which then bungs her up for a few days. We suggested she wait half an hour in case needed to go on way home and it might go off so she could stay then anyway. She agreed and only took one immodium just in case and luckily it did go off and she soon relaxed and stayed the rest of the afternoon and didn't go home until after tea about 7pm. She called me friends name a couple of times today but quickly went back to realising I'm Andie.
She did have a few worries around where she lived during the afternoon and when we were taking her home as she couldn't remember where she lived and was mixing up her addresses. We told her no need to worry we knew where it was and she'd recognise it when she got there and although she went back to it a few times she was a lot calmer about it than previously.
When we got to mums and were putting her shopping away she lost her house keys and was a bit worked up trying to find them, so hubby and I kept saying don't worry we'll find them they must be in the house and after a few minutes I found them in her knitting bag she had brought in with her. She also got a bit mixed up about a couple of other things but she didn't get aggressive about any of it and was easier and quicker to calm.
We stayed for about half an hour before we came home and she seemed ok when we left and also when I rang to say I was home and she hasn't rung in the couple of hours since so I'm hoping she will have an okay night.
I do hope that the worrying doesn't get much worse and she feels calmer, I hate to see her upset and confused. I know with dementia that is inevitable but I love mum to bits and we all want to spare our loved ones hurt and upset don't we.
I'm going to give the appointment card idea a try, thanks for the encouragement, if mum keeps asking next time we have appointment at least I can show her and even give her a card which may at least stop the do we need to go today and the will it be open now questions, even if she keeps on checking time etc, which I'm sure she will, it might just help a little to show her a card. I think sometimes she worries we're just turning up uninvited and other times she thinks if we've not got a card its not official and we can just go when we like so could go later.
Thanks for the link @imthedaughter I'm ordering them tonight :)
@deepetshopboy we got careline panic button and door sensor a bit before christmas via council, mum won't wear her panic button and often asks what the receiver box is and says she doesn't want it but so far she hasn't insisted we send it back. The door sensors will alert control room if go off overnight but not during day but I feel its worth having them just in case but worry about her going out in day when I'm not there too.
Sw has said she will sort a day at day centre and refer mum for a volunteer befriender visit and contact care agency for carer visits but they may all take a while.
x
Good that will give you a small bit of respite .same here my dad has box but doesn’t want it /wont know how to use
it .
Im currently getting no carers anymore unless i pay from my dads savings as there still assessing but 6 week emergency carer finished so have to ring same agency and see if they can get her back ill pay im shocked at lack of communication by social worker.
 

annielou

Registered User
Sep 27, 2019
489
Yorkshire
Good that will give you a small bit of respite .same here my dad has box but doesn’t want it /wont know how to use
it .
Im currently getting no carers anymore unless i pay from my dads savings as there still assessing but 6 week emergency carer finished so have to ring same agency and see if they can get her back ill pay im shocked at lack of communication by social worker.
Just read your thread on financial assessment, sorry that something else isn't working out for you (x)
 

annielou

Registered User
Sep 27, 2019
489
Yorkshire
Feeling awful and guilty this morning, I was at doctors with hubby at 7am this morning for follow up appointment after he had 24hr BP monitor on a couple of weeks ago. Unfortunately his readings were consistently high both day and night so GP wants him to go on medication. We've to go back tomorrow for bloods and ecg to rule out any other causes first and then back to see gp next week to talk about and start treatment.
I'm feeling guilty as I'm sure the stress of me staying at mums for 3 months and us seeing mum everyday for months and dealing with all the problems over last couple of years has raised it.
Hubby is a worrier and doesn't deal with stress or illness well and besides him seeing mum every day its mainly all we talk about for months and has been a big part of our lives for a couple of years as mums memory and mood got worse. He was hoping the 24hr monitor might give better readings as his BP always goes up at drs as he gets so nervous about it and had been taking it at home on his own monitor and it wasn't as high, most of his readings were ok, but not so with gps 24hr monitor readings.
He didn't want to go on medication and asked if he could try lifestyle changes instead, he could eat better, do some exercise, and lose a bit of weight, but theres not much he can do about the stress at moment. Even though I'm home at night at moment, things are still stressful with mum and can change any time. The dr wanted him to try medication and said if goes down significantly they can always reduce it and consider stopping in future if stress levels and reading drop for good period of time. So it looks like hubby is going to have to take tablets for high blood pressure poor love. I hope it helps X.
I'm grateful that staying at home overnight meant I could get up and go with him to doctors this morning before I go to mums for the day. When before I couldn't go as was with mums 24hr a day. I'm going to go tomorrow too and then hubby will drop me off at mums for day on his way to work and I'm hoping we can make next weeks appointment so I can go before going over mums too.
Poor hubby I feel so guilty
 

Pete1

Registered User
Jul 16, 2019
487
Hi @annielou, don't feel guilty, sadly the situation is what happens in every day real life. Your husband is under the Doctor so will get medication to help manage the situation. It is difficult for both of you I'm sure, at least you have felt able to leave Mum overnight which must help. The reality is that the situation of trying to maintain the independence of a loved one with dementia is often extremely stressful for the family involved in providing the support - and I don't think anyone is under more strain and stress than you. That is why you do need some additional support to help lift that, be it respite or home care. Stay strong, all the best to you and your husband.
 

Woohoo

Registered User
Apr 30, 2019
682
South East
Morning @annielou , I’m sorry about hubby’s bp. Mine too has the same thing and he is a worrier too. As he gets older he is worrying slightly less thank goodness . He wouldn’t take medication (naughty boy) but he does eat quite healthily now and takes turmeric and other vitamins. Maybe hubby might only need medication for a short time, better to be proactive than reactive . Please stop beating yourself up , if it wasn’t your mum (and it may not be) he would worry about other things . I also worry that I have put all this pressure on my family but we talked about it and it’s what they all want to do, it could easily be your in laws and you would support him just the same as he is you , he loves you and you are a partnership, please be more gentle on yourself . Xxxx
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
I'm feeling guilty as I'm sure the stress of me staying at mums for 3 months and us seeing mum everyday for months and dealing with all the problems over last couple of years has raised it.
Hubby is a worrier and doesn't deal with stress or illness well and besides him seeing mum every day its mainly all we talk about for months and has been a big part of our lives for a couple of years as mums memory and mood got worse.
I feel exactly like that @annielou It creeps up on you and now everything about my life and subsequently my husbands life revolves around dad. I read the 'Carers guide for selfish pigs' and it explains how the carer becomes disabled by the disease of the person that you care for as the disease progresses and it is true.

At each step of the way you are able to do less just like the person who has the disability. You become more tied until you are with them 24/7 and it takes a little bit more from you each day until you are unable to carry on a normal life as though it were you yourself who has the disease or whatever disability that the person you care for has.

They are unable to lead a normal life so neither are you and that affects our husbands/partners or whoever. I hope that you get some real help.
 

annielou

Registered User
Sep 27, 2019
489
Yorkshire
Thanks for your support @Pete1 @Woohoo @Duggies-girl xxx
This dementia is a bug@@r sneaking out and ruining things for our loved ones and us. It does take over us too thats so true @Duggies-girl. Our lives revolve around it and not what we need or want anymore. Hope hubby is keeping his bp down @Woohoo x
Hope you are all taking care of yourselves and your loved ones, hugs for you all (X)
 

Woohoo

Registered User
Apr 30, 2019
682
South East
Thanks @annielou ,he seems to be getting it under control . hope today hasn’t been too bad for you .

Good luck for you and hubby tom with bloods and ecg, hope all goes well. Maybe there is something in the white coat syndrome as it was high while he was wearing monitor but ok at home , can you show the dr home readings ?

Take care of you too amongst looking after everyone else . X
 

Bikerbeth

Registered User
Feb 11, 2019
737
Bedford
I echo @Woohoo please take care of yourself too. You are bound to feel guilty about hubby being affected by your Mum and the care she needs. But none of you choose this horrible situation. I hope the ecg and blood tests go ok and nothing sinister turns up
 

Sarasa

Registered User
Apr 13, 2018
849
@Annilou, hope the visit to the doctors today goes well and results are OK for your husband. You are really caught in the middle here with two people who both need you. How has your mum been, any luck yet with Social Services?
 

annielou

Registered User
Sep 27, 2019
489
Yorkshire
Thanks @Woohoo @Bikerbeth @Sarasa xxx We went for hubbys bloods n ecg doing today and booked to go back to gps tuesday for results and if nothing else shows up for hubby to start bp medication.
Doctor did say he could see hubbys own readings were ok that he gave to nurse before 24hr monitoring but every one of their readings were above so he said he thought was best for him to go on medication. Hubby said today he's decided if it is going up when he's stressed then with things as they are maybe better to take medication and try keep it down.
After drs hubby took me through to mums to give her morning tablets and then drop mum and I back at our house on his way to work. When we were ready to leave mums I realised she didn't realise I was her daughter again, she thought I was her friend Andrea. I didn't know whether to go to our house as previously she has got distressed we at my house but I shouldn't be there as not me and she has wanted to leave and tried to leave herself. But she was calmer today and said she was ok and wanted to go.
I have kept calling her mum all day but it has seemed that she hasn't know I'm Andrea her daughter all day. She has called me Andrea though and been happy to be here with me but has mentioned our andrea a few times and a few other things every so often that i could tell she didn't realise who i was. I've just gone along and not tried to put her right.
As she often does when we were taking her home she asked if knew where she lived and got her address mixed up so I just told her we knew where she lived. Then when we got to hers she said wont see me tomorrow as she was going to ring our andrea and ask her to come over. Which she had said a couple of times during the afternoon at my house. I didn't say much just let her say it and said I'd ring her when I got home and we said night etc.
Unfortunately when I rang to say I'd got home she asked who I was and where I'd been and said she thought she had been at 'friend and friends hubbys' house all day and they'd dropped her home. She got upset that she couldnt remember seeing me and didnt know it was me and said she was losing it. She asked if I been to her house and if she'd been with me etc and was upset about it. She asked if I was ok and happy and said she didn't mean to say anything to upset me or fall out with me so I told her she hadn't and that we hadn't fallen out and I'd been to see her everyday. She said she was going to ring to ask me to go over tomorrow but couldnt find me in her book and didnt have my number so I told her I was in her book and phone and told her my surname and she found it and checked address and number with me.
She was upset saying she was all confused and her brain had totally gone because she didn't know it was me so I said she hadn't and said not to worry about it, it didn't matter and it would come back to her later. I said she had been calling me Andrea today and only just mentioned 'friend' which was true, she hadn't called me 'friend' till then but I didn't tell her she had thought I was a friend called Andrea and hadn't know I was her daughter Andrea all day because I was trying to minimise it so she didn't worry and feel as bad about it and hopefully calm her down. She would calm down a moment but then ask something again and get upset again then calm again.
When she was a bit calmer and said she'd let me go now and to enjoy my evening I told her I'd ring in the morning and go through to hers tomorrow. She said she would write it down that Andrea is coming tomorrow, was that ok? and I said yes it was fine I'd ring her in the morning and go through tomorrow. When we were saying night I mentioned something on tv hoping to get her thinking about that rather than not knowing who I was so I'm just hoping that worked and she relaxed and calmed and hasnt been sat there upset and worried .