Had enough today.

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Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Thanks for sharing the lovely photo of your mum Lavender. She has a good face for 82! And her own teeth, or are they dentures?! A lovely face, lovely but also sad, sad that she has to endure this illness, like my own mum.

Yes, there must be some very sad stories of people in homes with no one to visit them, no family and no outsiders to care for them (I might be one myself one day!). I guess they also have no one to bring them gifts and new clothes, slippers, etc. Perhaps not good to dwell on that too much as I'm feeling sad today.

My mum is clearly declining further mentally now. There was a brief period after the stroke where there were some quite lucid moments, for not for a while now. There's often a short time first thing in the morning where she is a bit more 'normal' mentally, but by evening the confusion is hard to bear. And very often now she cannot name me and does not seem clear about our relationship to one another, I find it hard not to cry in front of her at times as it catches me suddenly. She will suddenly make a statement, out of the blue - I know she is probably not formulating the thought herself in her head as I don't think she's capable any more, but it will be something that just rips at your heartstrings. Desperately sad.
 

father ted

Registered User
Aug 16, 2010
694
London
How up and down life is when you live with someone with dementia. I intentionally don't say care because my Mum says I don't care for her. She does say thank you for what I do but doesn't see that doing her laundry, cutting her toenails, cutting and painting her fingernails, always making sure she has her medication, doing her meals, arranging sitters so she doesn't sit on her own all evening when I go out is caring.

Last night she called me at midnight as she had fallen out of bed. 2 hours late she called her again because she didn't feel right. Felt a bit wobbly and wanted help to toilet which I did, asked for painkillers for her leg which I went downstairs for, back up told me she had not slept at all, helped her into bed so she was comfortable. I went back to bed but 5 minutes later she was up again but this time didn't call.

This morning I say perhaps we should call the GP/memory clinic to get medication reviewed as she needs stronger painkillers and maybe a different sleeping tablet. She looked at me and said she had not fallen out of bed, she had not called me, she slept fine. Why do I say these things?
Only earlier this week I responded to this thread now I am feeling the same. As you all know my daughter needs me to wash her, dress her, feed her, brush her hair, take her to the toilet and organise some sort of social life otherwise she would just be stuck in an armchair playing with her IPad ( she does this a lot already as I, at nearly 60 find once I have done all the day to day stuff that has to be done I have barely any energy for the fun things).
Mum is needing more and more help in little increments everyday. They little things like putting her slippers on getting her a clean pad (she still manages washing and dressing herself). But lately when I help her upstairs she wants help to get undressed. I feel hard and cruel in fact my Mum has told me I am but I am on the go all the time and I got so mad when Mum asked for painkillers and I got them and a glass of water. She said she didn't want the water in the glass she wanted it out of her plastic bottle upstairs, can I go and get it . I said no and this caused much upset again. She is starting to have 'accidents'. My daughter does too occasionally and I can do it for her but find it so much harder with my Mum.

It is so hard that Mum's behaviour is so unreasonable at times and yet, she still manages quite well for her age. Recognises everybody, takes an interest in some things so she is not far down the road dementia wise but her anxiety, constant repetition is unrelenting. When first diagnosed she made me promise I would tell her if the disease ever made her unreasonable or out of touch with what was going on her around her- she didn't want the indignity of people judging her. Now 8 years down the line I feel I am in chaos. I don"t feel I can do it much longer but I haven't got the guts or energy to do anything about it.
 

MaryH

Registered User
Jun 16, 2016
120
Ottawa, Canada
father ted,

Sorry you are having a hard time and lots of sympathies. It is hard caught between 2 loved ones needing lots of help and you cannot split yourself into 2 nor clone yourself. Having majority care for 2 loved ones are a lot and it can be overwhelming at times, especially when the PWD get into a state and then do not remember after and say why are you so stressed?
 

Lavender45

Registered User
Jun 7, 2015
1,598
Liverpool
Thanks for sharing the lovely photo of your mum Lavender. She has a good face for 82! And her own teeth, or are they dentures?! A lovely face, lovely but also sad, sad that she has to endure this illness, like my own mum.

Yes, there must be some very sad stories of people in homes with no one to visit them, no family and no outsiders to care for them (I might be one myself one day!). I guess they also have no one to bring them gifts and new clothes, slippers, etc. Perhaps not good to dwell on that too much as I'm feeling sad today.

My mum is clearly declining further mentally now. There was a brief period after the stroke where there were some quite lucid moments, for not for a while now. There's often a short time first thing in the morning where she is a bit more 'normal' mentally, but by evening the confusion is hard to bear. And very often now she cannot name me and does not seem clear about our relationship to one another, I find it hard not to cry in front of her at times as it catches me suddenly. She will suddenly make a statement, out of the blue - I know she is probably not formulating the thought herself in her head as I don't think she's capable any more, but it will be something that just rips at your heartstrings. Desperately sad.
Hi Marnie they are dentures, but they do look very realistic! Mum has good skin so she could maybe pass for less than her 82 years, funny thing is she's never gone in for moisturisers. I'm convinced I'd look like a dried prune without a daily moisturiser, but not mum. I know what you mean about the confusion. Mum knows me as Amanda a lot of the time, but Amanda can be her daughter, her niece, her sister or nobody in particular. It realy threw me when it first started happening, but like everything else we adapt and carry on. What else can we do.

Father Ted I know it's hard when you do so much and it's not recognised or really appreciated. This time last year things were at their worst for mum and me, she was aggressive and just plain nasty so much of the time. The one saving grace was that she mostly slept through at night. Had she been up regularly at night I would not have coped at all. I really admire you and all the others caring on broken sleep that really would have broken me. I know it's far too easy for me sitting here to say things have to change, but caring for two people in all honesty isn't sustainable long term. Would you take a look at homes, you don't have to make a decision now, but knowing what is out there and which homes might be an option could help just a bit. X
 
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Harrys daughter

Registered User
Jul 12, 2016
385
SURPRISE
I'M BACK
sorry folks I went awall but iv read up to date and want to send out loves n hugs for you all.
Iv had to come off to as I was just like what jp said. I'm reliving all the pain from my dads illness and the grief is just to much I have had lots of good things going on around me but I'm not ready to bounce back to my old self yet. I truly beleave grief has to have it's time.
This time last yr was horrendous my dad was dying in the most terrable way and I was loosing my sh!t with him as I was so exhausted the guilt monster has been feeding itself from this and iv no strength left to beet it with my big stick. on sunday26th it will be the date my smashing dad died and I'm hoping to make the date a happer one as I'm getting my 2nd new Devon rex I'm spoilt by my husband who refuses to let me get a job and is buying me my 2nd baby.
I'M unable to return back to work just yet as iv been ill and I'm under investigation I'm hoping for results soon so I can hopfully be fixed I'm struggling with my blubber Iv put on 3 and a half stone since my dad's died so I'm getting wider by the day!
I got my 1st Devon rex and we have called him Tyrion iv had him since 9th October he is 22wks old now I will try to upload you a photo but I don't hold much hope as I don't like this new set up.
So to all you out there struggling with caring or grief ((((((hugs))))))
 

DollyBird16

Registered User
Sep 5, 2017
1,186
Greater London
Tyrion 2nd try
Hi, good to hear from you, sorry to read you had a truly horrid time, you’ve been really wise to take some time out and aim to move to a better place.
Many hugs to you.
Keep looking after you and of course the new additions.
There is simply more of you to love not weight gain. I stick with that. X
 

Lavender45

Registered User
Jun 7, 2015
1,598
Liverpool
You deserve spoiling HD! A second little bungle of fun and fur will do you the world of good. You know I think Tyrion is gorgeous I bet the new addition will be too. Wonder who will be the boss. Poor Lala won't know what's hit her with double trouble on her case!

Be kind to yourself over the next few days. 12 months have flown over, I can hardly believe it. You know I'm here if you need me. Xxx
 

Lavender45

Registered User
Jun 7, 2015
1,598
Liverpool
Just a quick update. It took 3 calls to the consultant's PA and a bit of assertiveness, but I've managed to get mum's consultant to see her on 1st December rather than the 19th as she intended (if you remember the home had requested an earlier medication review and she had refused).

Persistence pays off. The consultant knows me well enough by now, I wasn't going to back off. I'm a happy bunny for now. X
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Am posting on here if for no other reason than to keep the thread going! I completely understand those folks who have 'done their time' with dementia wanting to take a break from here. I will probably feel the same one day.

Welcome back @Harrys daughter. I hope you are able to come to terms with the guilt feelings. I think I said before that I would recommend counselling, provided you can find a good counsellor of course. Sometimes it's a great help to just offload onto someone who is happy to take it, and even better if that person can offer some words to help you through a difficult time. I myself have this idea in my head that once this dementia horror with mum is over, I'll be merrily getting on with my life, but have no idea what the reality will be.

@jorgieporgie I hope you're doing OK. And @rosy18 - you too, I hope. And everyone else of course.

I don't want to speak too soon, but over the last couple of weeks mum has 'woken up' after the stroke. She doesn't sleep as much as she used to and is eating much better. The pressure sore is almost healed over and, best of all, I've got her walking! Well, maybe not walking proper, but she can take a few steps from wheelchair to chair. It isn't even two weeks since I consigned the hoist to the garage. We had 'clearance' from the physio to use the Rotunda for transfers, but I have only used that once today. I must get some advice from someone on walking frames. Mum never had one before as she walked well with a stick, and there are so many, I have no idea what kind would be suitable. The physio is here again tomorrow, so I will ask. She had suggested a gutter/forearm walker, so maybe that's what we need next. I know mum could go downhill again at any moment, but it's a joy to see her a little 'revived'. She hasn't been out of the house for over 3 months now, I really hope I can get her into the car soon and take her out somewhere, even if it's just for a drive. She desperately needs a haircut and I hope I can achieve that before Christmas. Our hairdresser is an hour away, so with the mobility and continence issues, if I can crack that one, that will be a real achievement!

Maybe this Christmas won't be so awful after all ...

Lavender - I hope the meeting with the consultant goes well
 

rosy18

Registered User
Jul 23, 2016
1,279
Blackpool
Hi everyone
I've been reading but just felt too tired to post anything. Been having tough time with Mum and her bowels still and poor Mum having no idea what's going on, she's lost a lot of weight now 6stone 12 and is very frail and doesn't have great mobility. At 6pm it takes both myself and the carer to get Mum into bed as when she is tired she can't walk but she's still here and still able to give me a smile.
Marnie I sympathise my Mums not known who I am for 50%of the time for the last 18 months it really is a tough one to deal with but as long as they feel safe with us that's the best we can hope for. Your doing a great job with your Mum to have her standing and eating better is just wonderful.
Lavender will be thinking of you tomorrow I do hope your meeting goes well.
Jorgie,Harrys'd, Mollyd, Worrier and everyone on this wonderful thread big ((hugs))xx
 

Countrygirl5457

Registered User
Apr 16, 2012
6
I care for my husband at home it is so difficult at times especially at night trying to get him in bed he toppled over tonight and I could not get him up I had to call on my Nephew to lift him up... It upset me and I cryed because I couldn’t get him up I have been waiting for help to be put in place it takes so long..
 

Countrygirl5457

Registered User
Apr 16, 2012
6
Hi everyone
I've been reading but just felt too tired to post anything. Been having tough time with Mum and her bowels still and poor Mum having no idea what's going on, she's lost a lot of weight now 6stone 12 and is very frail and doesn't have great mobility. At 6pm it takes both myself and the carer to get Mum into bed as when she is tired she can't walk but she's still here and still able to give me a smile.
Marnie I sympathise my Mums not known who I am for 50%of the time for the last 18 months it really is a tough one to deal with but as long as they feel safe with us that's the best we can hope for. Your doing a great job with your Mum to have her standing and eating better is just wonderful.
Lavender will be thinking of you tomorrow I do hope your meeting goes well.
Jorgie,Harrys'd, Mollyd, Worrier and everyone on this wonderful thread big ((hugs))xx
Hi everyone
I've been reading but just felt too tired to post anything. Been having tough time with Mum and her bowels still and poor Mum having no idea what's going on, she's lost a lot of weight now 6stone 12 and is very frail and doesn't have great mobility. At 6pm it takes both myself and the carer to get Mum into bed as when she is tired she can't walk but she's still here and still able to give me a smile.
Marnie I sympathise my Mums not known who I am for 50%of the time for the last 18 months it really is a tough one to deal with but as long as they feel safe with us that's the best we can hope for. Your doing a great job with your Mum to have her standing and eating better is just wonderful.
Lavender will be thinking of you tomorrow I do hope your meeting goes well.
Jorgie,Harrys'd, Mollyd, Worrier and everyone on this wonderful thread big ((hugs))xx
 

rosy18

Registered User
Jul 23, 2016
1,279
Blackpool
I care for my husband at home it is so difficult at times especially at night trying to get him in bed he toppled over tonight and I could not get him up I had to call on my Nephew to lift him up... It upset me and I cryed because I couldn’t get him up I have been waiting for help to be put in place it takes so long..
Hi Countrygirl sorry to read about your husband toppling over it really is so difficult. Get your district nurse or GP to get you Vitaline installed if you don't already have it. It's great for situations just like yours where either your husband or yourself could wear either a lanyard or wrist strap with a button to press and they will come and assist you straight away. One night I was getting Mum off the commode she stumbled onto me as I was holding and guiding her back to bed and she fell on top of me on the bed. I really dont know how I got us both upright but I managed it just. After relating the tale to the nurse she said we needed to have Vitalise and because it was being recommeded by the GP/nurse it would be free. It just gives you piece of mind
Please also chase people up tell them you are struggling and really need some help asap.
Keep posting you will find TP a great source of help and comfort.
Sounded like you could do with a ((hug)) x
 

jorgieporgie

Registered User
Mar 2, 2016
1,985
YORKSHIRE
Hi Everyone
Marnie your doing so well, I do hope you have a nice Christmas this Year you so deserve it. Wonderful news that your Mum is more mobile, she is a fighter.
I do think about everyone, but I have taking a step back from TP it is too upsetting reading and knowing what your all going through plus it brings it all back to me.
It's been a year since Mum passed and I thought things would get easier but as time passes the void of not seeing her again is still raw and gets harder not easier.
Please Please keep this thread going its been such a lovely little Family and we have all been there and helped each other through the good and bad times.
I hope you all have a peaceful Christmas ,big hugs xxxxx
 
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