I need to clear my head

[Rachael81]

I don't care if anyone reads this, offers advice or support.... I just need somewhere to get thoughts out of my head where I believe I won't get judged or these thoughts affect the relationships I have with people around me.

It's been a tough day, arranged to meet my mum (PWD) at her flat and go for lunch and then into our local larger town at her request for something specific but she was unable to say what. Cue lengthy discussion on where to go for lunch so it would be quiet and not full of kids (it's still Easter holidays in our area) and much prompting to work out what she needed from town (turned out to be socks from M&S as hers has a hole).

So we have an enjoyable lunch and chat about various things, occasionally having to repeat things and get her focus from the cute tot grinning at her from the next table, but that was okay.

On the drive into town she did the usual "glad you know where to go, I've never been down here before" that's common if it's a route we don't do at least a couple of times a month. I had to exhaust a complete list of car-parks and streets we could use to walk into town before she decided we'd park in an out of town centre with a shop she'd like to look in. I lost her in said shop twice and this was when the "are we done"s started.

The "are we done"s are frequent on any shopping trip that involves more than one shop and more than the shops she wants to look in. I've given up trying to shop for myself when I'm with her - even if it means taking her home, making an excuse and going back to the shops alone. We used to spend days on mum and daughter shopping trips, travelling to big cities like Manchester and York and spending 4-5 hours browsing round and having lunch, can't imagine ever doing that again.

So we walk into town and go to the post office, where she gets in the way, nearly looses my place in the queue as I was hunting for something in my bag and is a bit of a nuisance, but it was the one thing I needed to do. We get her socks - I've never seen someone take so long to decide over a pack of ankle socks that no-one will see but them! She pays whilst I carry on browsing. I ask where else or if it was "home James" - she said she was done, and if I didn't want to go anywhere then home it was - I did want to look for a new hoody but couldn't cope with her "which shop" "where is it" "why do you want that" and all the other questions so I said we'd head home.

We got back to hers and I needed to respond to a few emails and do something to a spreadsheet for a group I volunteer at. She stood there and tapped the radiator and stared at me. This is now the norm, she taps.... Anything she can: her hand against her bag/a wall/radiator/chair or her feet. It's annoying, if there's music playing the tapping doesn't coordinate, she's got a rhythm going on in her head that no one else is party to (my gran used to tap too but not noisily as it would be slippered feet against carpet, fingers playing an invisible piano on her chair arm). She gets a glare from me and stops for a while, but I've no idea why she stares. Her social skills are deminishing: she burps and farts without an "excuse me" amongst other things I can't think of now.

She wants to see me every day off I get (I work full time, any 5 days out of 7), but I can't talk to her for more than an hour or so... She'll think of something to tell/ask me get half way through and lose her train of thought, which frustrates me as it must have been important for her to want to tell me.

I love her so much, and it's breaking my heart and frustrating the hell out of me to see her like this... And it's early stages and mild, how I'm going to be later in is beyond me.

We've not seen the GP since memory clinic diagnosis (a month ago) and I think we need to. But mum's favourite GP left the surgery and she doesn't seem to trust any of the others, depending on her mood that can know what they are talking about or be saying complete rubbish!

Feeling better and like I might be able to sleep now I've cleared my head... If anyone did read this, thanks and I think you need a medal for getting to the end.

 

[Slugsta]

(((Rachael))) it's a bu$$er, isn't it? I do hope you are, at least, able to get a good night's sleep.

 

[susy]

I did read it Rachael. You are on a really tough part of the journey that a lot of us have been on before you and each of us who have will see similarities and differences with each story. We are all here to offer support and welcome you to here. I'm sure more people will be along and will be much more eloquent than myself but I would like to say, come here and share/rant/cry/laugh/anything you need xxxx

 

[Beate]

Good god, woman, you can't continue like this. Get on to Social Services for access to day care and befrienders. You're entitled to a carers assessment by law and the sooner you get into the system with her, the better. I know how hard it is to care for someone while working full-time. It nearly broke me and I could not have done it without other people looking after him during the day.

I know you will not have much time for carers cafes but make contact with your local Alzheimer's Society and Carers Centre. They have a wealth of information and can offer practical and emotional support as well as advocacy if you're too busy chasing officials yourself.

 

[DMac]

Rachael, please try to carve some space for yourself into your busy life, so you can take a breather, relax, and reflect. Also, please get some support. Perhaps there is a carers' support group in your area? Have you contacted the Alzheimer's Society in your area? They may have a dementia navigator who can point you in the right direction to access the help you need. Do you have any supportive family members nearby? Perhaps your GP could help?

This is in some ways the hardest part of the dementia journey, when the PWD has enough 'nous' to make demands, yet they forget what it is they want exactly....! Now is the time to build up your support network, even if you feel you don't need help just yet. They will be there to help you when you do.

Good luck, and keep posting. xx

 

[Rachael81]

Thanks to all four of you, your kind words helped.

It feels like we're stood on the edge of a very scary-looking, deep swimming pool and mum won't jump and I want to, to see what happens and get help if we need it.... But don't know what form the help would take or where to get it, surely if we're drowning in my analogy someone will help?

 

[Bessieb]

It is a really scary and uncertain time Rachael. Many of us will on here will know how you feel. The changes in someone with dementia are really hard to accept because let's face it we want them to be how they've always been and our relationship to stay the same. And we don't know what's around the corner.

It is very normal to feel frustrated though. Even though we know it's not their fault. There is also an element of self-preservation that needs to kick in though. You need to be feeling strong and coping with everything so you can make decisions along the way. That does mean accessing support and making sure you prioritise yourself too. It took me ages to realise that I had to cut down my visits to my Mum and Dad - they wanted to see me every day and I was doing that but it wasn't the right thing and was wearing me down so I couldn't see the wood for the trees in terms of their care and the situation as a whole. Dementia sadly does diminish the ability to see things from others perspectives and your Mum will be asking you to do things and won't be able to consider you in the bigger picture.

I hope you manage to find a balance so you can support your Mum and still enjoy her company. TP is a great source of support ...lots of people who understand.

 

[LYN T]

Yes, someone will help-but you have to start the ball rolling. The suggestions above about day care are sound-your Mum may even enjoy herself.

Remember if the stress you are experiencing gets worse you will possibly suffer from Carer's breakdown-and that won't help your Mum. Please pick up the phone and ask for help.

Take care

Lyn T XX

 

[Julia B]

Morning

Welcome, nicely put , all of it, it's tough now and will be harder, like the other suggestions get some support in place, admiral nurses and adult social care - but well done honey, you're doing great, and the love you have for your mum is just sparklingly obvious. You aren't alone - clear your head as often as you can, as much as you need to.. we're here and we think you are brill. J x

 

[jaymor]

Hi Rachael, many of us have been in that shop, bought that pair of socks and tried to work with someone on our left shoulder tutting or tapping away and it is somewhere non of us wanted to be so totally understand your frustration.

I think this is one of the hardest parts of the dementia experience. Your Mum stands before you, looking as your Mum always has, functions the same as she always has but for some reason is acting in such an odd and annoying fashion. I used to get to the end of the day and think, my two children, even during the 'terrible two' times had not behaved, annoyed, infuriated me so much as my husband had in just one hour.

Time makes it easier to manage but time will also bring more problems and as others have rightly said, the time is now to source some kind of help to enable you to get some time for yourself and Mum used to being involved with other people, be it carers or people at group meetings.

Take care of yourself, that's important.

 

[Kjn]

Well done for getting it down and out of your head, often a hard thing to do.
Keep talking if that helps, we are all here to listen.
By the way my dads a tapper

Xx

 

[Rachael81]

By the way my dads a tapper

Is there a reason for the tapping? Do you know any strategies for stopping it?

 

[Kjn]

Fraid not , though I've read others try and keep hands busy with other things. Twiddlemuffs perhaps, cards, brochures etc. He just won't , just goes back tapping or shoving things down side of his chair. X

 

[Otiruz]

Oh Rachael81 - I can sooooo sympathise with your post, every single word. Three and half years twice a week shopping trips from hell. Lunch which Mum moaned at the whole way through and then said I didn't take her anywhere. - I once went to a large Morrisons on a Saturday morning (Mum's request) and my poor mother could not decide whether she wanted a large trolley, small trolley, large trolley with a basket in it, small trolley with a basket in it.... which ever direction I went off towards she shouted at me having changed her mind. I tried the 'diversion' tactic and asked her if she wanted a newspaper, she said she wanted the toilet, we started to walk towards the toilet and she told me to stop following her she could go on her own. I stood and watched her weave slowly through the masses of people hurrying out and Mum could barely figure out how to get through, she stopped and obviously could not remember where she was going or why. On top of all the stress, indecisive and unreasonable behaviours, blaming me for everything, upto 7 phone calls in the evening, me not sleeping properly, her not washing etc etc etc, feeling as if I was constantly treading on eggshells in order to help, but trying hard to not appear to be helping - at that moment I wanted to lay on the floor in Morrisons and scream and scream with frustration. I could see myself doing it in my head!

I wish I had found TP sooner - it might have relieved the irritation and resentment and then guilt I constantly felt. Your description is invoking of recent memories and I often said to my partner (long-suffering I might add), that I felt like I was inside a spiral with my mother, out of control which was spinning faster and I could not get out or stop it. I think, looking back, it was the most stressful period of time because I had no power to really do the things I knew my Mum needed because of course she did not recognise the need for any help. But she was able to micromanage every second I spent with her. The disease is hateful but the person isn't. Keep posting, it's mightily helpful - and we've been there.

 

[chrissie121]

Clear my Head and have a day off!

I feel for you Rachel, I really do. My Mum is in the middle stages now of her illness and we don't do the shops anymore. she is now in full time care. She was diagnosed nearly 3 years ago but its relentless now and was even more so when she was still at home. The comments are right, you need to get her back to the GP and involve social services who can recommend/organise day care centres she can visit. Sell it as day out with other ladies/gents. It took some time but I got my Mum there. I can only tell you it will get harder so if you can get SS involved at the early stages, this will help. Also the 10 week sessions they hold at the memory clinic, these are usually once a week and are very good and again you will have someone on the team there to share your concerns with and offer you practicable help and guidance. SS is a good starting point as they can be very supportive and offer advice. Mum was provided with a social worker when I first contacted SS. Although I didn't contact them until some way down the road with Mum's illness. Now I wish I had them to call but sadly as Mum is now in full time care, they are not really involved on a day to day basis.

Good luck.xx

For me I just need to clear my head and have a day off. Unfortunately my Mum seems to have one health issue after another ( as well as the VD). She has lymphodema in both legs, has arthritis in one leg, developed a severe rash some 8 weeks ago, which resulted in a hospital stay but the itching has returned! It just seems to be something every day of the week with no let up. The local Surgery have not really been brilliant and I find myself constantly complaining about the service provided to the elderly by the practice. Thus I am sure they groan when I call yet again about Mum not being well and in discomfort. But I am finding that if you don't pick up the phone and request help, you will just be seen when and if they can fit you in and there is time. This doesn't really help when someone is in extreme pain or discomfort. Mum never seems happy anymore, her moods range from very angry and cross to tears. Frankly I find the angrier moods much easier to deal with than the tears but just lately I feel its a constant daily battle to try and make her life more comfortable battling with GP surgeries, constantly calling into the home, speaking to the team leaders, trying to reassure her, it will get better etc etc. In the past 14 days alone I have had a spell in A&E for more than 15 hours with a very angry lady, been contacted at 7pm by the hospital requesting I collect her as the transport were so busy they could not bring her back until gone 11pm. Liaised with the home/team leaders daily, and visited 10 times in 14 days Visits are never short, there is always something to sort out, whether it is her clothes, that she has ransacked looking for something, or clothes that have come into her room that are not her clothes ( laundry services) or explaining to her over and over again where she is and answering the same question again, again and again. Plus handle daily calls from Mum that range from 3 or 4 to 10 or 11,depending on how she is feeling!

Apologies for using your post "clear my head" for my rant that I just want a day off!

 

[cragmaid]

Only you can make you have a day off...can I suggest that you do that as soon as possible. Start with a simple " We'll do it tomorrow".....follow it with a " Tomorrow" and keep repeating it.

Your post was me ten years ago....word for word, right down to the tapping.....Oh God, the tapping!!!!!!!! Mum always had beautiful, strong fingernails, right to the day she died, but they used to come bween me and my wits........and b**g*me, I find myself performing the same action every now and again, grrrrrrr.

Make the break now, or you will carry on losing yourself and your friends and your identity.

 

[Rachael81]

Apologies for using your post "clear my head" for my rant that I just want a day off!

No apology required!

 

[Rachael81]

Day off?

So my life is busy, it's how I like it.

I work full time in retail so hours can be a little unsociable but I wouldn't change my job, have mentioned that mums health may need me to request flexible working to my manager who's great, all the team are - were like a slightly dysfunctional family!

I'm also a leader at a brownie and a rainbow unit which takes two evening a week, and have volunteered at various other large events - I was a games maker in London during 2012!

For support I come from a tight knit family although it's only mums side I have contact with - my uncle was like a dad before The Big C took him a few years ago now, and my 2 cousins and their families are closer to me than some people are to siblings and their in-laws. But they all have their own issues - my mums SiL has lost 3 close family members to cancer within 4 years, one cousin has a whirlwind 4 year-old to look after, and the other is busy living in the big smoke that is London. I can't burden them with this on top, they wouldn't to me I'm sure of that!

6 weeks before my mums first TIA - she's got VD from having had a couple of these - I started dating a guy I'd known as a friend about 18 months before. This has made us stronger than ever, he's amazing and I frequently call him my rock and remind him he gives me the strength to cope. Not sure how many others would've stuck around in a fledgling relationship with such a life changing event happening to one side. He's even told me if I want to get married sooner rather than later so mum can be part of it he'd be up for it - despite on one of our first dates telling me he wasn't ever getting married! We're moving in together as soon as I've sold my flat and bought a house big enough to contain both our lives, with a spare room suitable for either of our mums to stay (his has various health issues too including diabetes and a heart complaint).

I'm only 35 so feel to be on the younger side of someone having to cope with this, mum had me later in life - she's 74 next month. I've had depression in the past caused by work stress and am scared this might send me back to those dark places - it was mum that got me through it with patience and love (and happy pills from the GP).

 

[cragmaid]

Oooh a wedding!!
We like weddings, especially in the Tea Room. Give us notice when we need to get out virtual hats and fascinators ready ( and that's only the girls!!)
Your partner sounds like a keeper

He's even told me if I want to get married sooner rather than later so mum can be part of it he'd be up for it - despite on one of our first dates telling me he wasn't ever getting married!

You have had a rough time, but with a fair wind and a good partner, you'll manage..x.x.

 

[1mindy]

I've read all the posts and am exhausted just reading them, being there is a whole different thing. Lots of medals, tea and sympathy required. Ask for help by all means , get the carers assessment as you are entitled to, then sit back and wait for them to tell you there is no money , no placements they can get but you could try and see what you can find.