I just needed to talk

[Fragmentsofred]

I just needed to talk, it seems mum has got worse, she has vascular dementia and she still suffers from the impact of a serious stroke – she can only move one limb properly and she can’t talk or communicate. Lately mum’s behaviour has got worse, she beats us up when we try to take her out for a push in her wheelchair, she threw a table today and hit another person’s foot and made it bleed. I was dragged into the living room where all the carers were stood around looking at me as if I could do something about it, as if I had a naughty child that I hadn’t chastised properly or something... what did they want me to do? It’s hardly my fault... she is in a care home because she needs much more care than I alone am able to give her. I want her to continue having days out and getting fresh air but I am worried because her growing outbursts are starting to get in the way. A week ago she threw her blanket off, showing her under-things, she kicked off her shoes and ripped off her coat and kept hitting out screaming and she lifted her leg as best she could (it’s very contracted) in the air showing everything she’s got while I rushed down the street trying to get her to a safe place as quickly as possible. I just want to do the right thing but I don’t know what that is. I thought about getting her a car so that if she is doing this sort of thing we can just drive her back to safety straight away but then I worried what if she puts the driver off with her behavioural problems and now I don’t know what to do for the best.

I’m just a bit lost I guess, mum used to always listen to me and if anyone could get her to calm down it was me, now not even I can’t make things right and I feel useless and at a loss. I guess everyone in my situation must feel this way sometimes. Now I’m not sure who to turn to for help with her and I’m worried that she’ll never see daylight again if I can’t get her to a point where I can take her out. Any advice, any words at all... I’d just be grateful for someone to tell me they understand right now. Thanks for reading.

 

[Fragmentsofred]

continued...

You know what... I think the above just got blurted out... I’m so miserable today. I just don’t know who to talk to or how to sort out the problems... I feel alone. I just don’t know how best to help mum and I don’t know where to go for advice or who to ask. I mean is this sudden change normal? I don’t understand. One moment I am my mum’s world and the next there is no talking to her. How can I take her out for fresh air and shopping if she is doing things that might cause her or others harm? Who can I turn to for advice? What should I do next? I want to bring her home for a visit like I used to but I can’t even get her out of the door of her nursing home even. Has anyone else got this problem?? Please help me, I just need someone to understand. Thanks

 

[jeany123]

I feel for you and your mum I am sorry I can't help but I am sure someone will be along soon that can give you some advice ,

Hugs from
Jeany x

 

[lady g]

Hi really sorry to hear what your going through with your mum. My mum isnt in a home but she is getting agressive and very fiesty with all of us. I often get worried and a bit scared and think is this how it is now. please keep posting and hope you get some valuable advice. In the meantime lot of love and hugs xxxx

 

[jenniferpa]

Hi and welcome to Taking Point.

I suppose the home has checked the normal things that we normally suggest when there is a dramatic downturn? She doesn't have a UTI? Or any other form of infection? She's not constipated? Could she be in pain? Pain is often under managed in people with dementia, and if her leg or other limbs are contracted they might well be painful.

Assuming all that has been checked out then the possibility exists that this is another downturn, I'm afraid. Can I ask - why do you want to continue taking her out? I'm sorry if that seems a clueless question but sometimes we get locked into doing things:"we've always gone out" and perhaps don't consider if that is now a good idea.

Do these outbursts occur at particular times? For example do they only happen when she is in the wheelchair? If that's the case perhaps the wheelchair is part of the problem - they can, unless fitted properly, be quite uncomfortable.

Sorry for all the questions.

Oh and P.S. - those carers standing around expecting you to fix it? Just ignore them if you can, or raise the matter with the manager if you can't. It's not on, not on at all.

 

[frazzled1]

I just needed to talk, it seems mum has got worse, she has vascular dementia and she still suffers from the impact of a serious stroke – she can only move one limb properly and she can’t talk or communicate. Lately mum’s behaviour has got worse, she beats us up when we try to take her out for a push in her wheelchair, she threw a table today and hit another person’s foot and made it bleed. I was dragged into the living room where all the carers were stood around looking at me as if I could do something about it, as if I had a naughty child that I hadn’t chastised properly or something... what did they want me to do? It’s hardly my fault... she is in a care home because she needs much more care than I alone am able to give her. I want her to continue having days out and getting fresh air but I am worried because her growing outbursts are starting to get in the way. A week ago she threw her blanket off, showing her under-things, she kicked off her shoes and ripped off her coat and kept hitting out screaming and she lifted her leg as best she could (it’s very contracted) in the air showing everything she’s got while I rushed down the street trying to get her to a safe place as quickly as possible. I just want to do the right thing but I don’t know what that is. I thought about getting her a car so that if she is doing this sort of thing we can just drive her back to safety straight away but then I worried what if she puts the driver off with her behavioural problems and now I don’t know what to do for the best.

I’m just a bit lost I guess, mum used to always listen to me and if anyone could get her to calm down it was me, now not even I can’t make things right and I feel useless and at a loss. I guess everyone in my situation must feel this way sometimes. Now I’m not sure who to turn to for help with her and I’m worried that she’ll never see daylight again if I can’t get her to a point where I can take her out. Any advice, any words at all... I’d just be grateful for someone to tell me they understand right now. Thanks for reading.

hi there,

I am so sorry to hear of your situation. I think you are very brave and very caring to be still taking her out and about and i dont really have any advice for you as such because i just KNOW its really really stressful but the alternative is staring at 4 walls and if youve got to do that for 20 years.....well you know....thats WHY i try to steel myself up for doing it. We have to go out to visit the clinic anyway as cannot get home visits so i feel that already the whole world is used to our meltdowns and episodes of confusion, incontinence, and everything else we routinely do in public. But its an illness and one cant help being ill and i HAVE met a lot of wonderful people who see through all this and they sometimes stop and physically help us and it makes it all worthwhile to try for a bit longer. I understand you and right now, thats all i can really say. Its difficult to think of places to go out and about where you have lots of disabled facilities to hand and things to occupy the mind in either rain or shine other than just going into a shop or into a restaurant but i think a combination of both....a really lovely garden centre, with an adjoining self service cafe, might be a less stressful venue. Simply because there are lots of different things to see, you can buy a small plant, she can touch it, feel it, smell it, and there are so many beautiful plants around at this time of the year not to mention blossoms on trees, and Care Homes seem to speak highly of their "sensory" areas, so they must really work well, and so....if you could try that, would that be easier or not for you?? well done for trying with a monumental task, congratulations from me to you...i know how hard it all is and youve done so well

 

[frazzled1]

i hope you are feeling o.k.now? I guess the most important thing is to remember all the happy and positive times and things you HAVE both done, rather than to worry about all the things that now it is impossible to do. Remember all the fun things you did and whatever happens, if now she has to just remain in a room being cared for and is not able to move out of her bed and room any more, please please dont ever feel guilty. Of course you just need to talk and we are here for you, to listen.

 

[AnnieS]

I know exactly how you feel. I just collected my mum to bring her back to my house for a meal and a glass of wine (she misses having the odd drink) but when I got to the care home she was furious as she says all her clothes have gone missing and replaced with other people's (with her name tag in). No amount of cajoling would bring her round and I got her home, thinking a change of scene would help but she wouldn't stop crying so I took her back. The carers at the home are lovely and they told me not to worry, it's just a stage of the dementia, coupled with the frustration of not being independent any more. They will give her a Lorazepam (which the GP has prescribed for when needed) and I think she needs her antidepressants reviewed, as they are at a very low dose. Have they thought about antidepressants for your mum? They might help with some of the rage. Just a thought. You are not alone in this and nothing you can do will help. As someone else said, try to hold on to the good memories. As the proverb says, 'this too shall pass'.

 

[Sharon Waugh]

Hi

I'm really sorry to read your messages. I too, am so desperate at the moment about my mum and like you, just don't know what to do. Please keep coming back here as since I found this site a couple of weeks ago, I don't feel as alone as I did before I found it.

Sharon

Xxx

 

[Fragmentsofred]

thank you

Thank you all, yesterday was a real bad day... I made a plan of action last night which made me feel a bit better, though it still hurts. It does make such a difference knowing people are here... sometimes that is all you need.

I was told that the reason mum might be unhappy is because she was only just showered before I came to collect her. Usually mum likes to go out, usually she loves it, I wave her handbag and her boots she grins and gets excited. I’m not used to her being already agitated when I arrive. I have noticed that of late she seems to have closed down a few more of the ‘windows’ I call them, I always say she lives small loops of memory and sometimes these change when another routine is collected into a loop and she seems to live there for a while. Hope you can understand that. In an effort to communicate with her I have sort of introduced routines and objects such as her handbag that I show her when we go out. Anyway, I have decided that next week I will tell them not to shower her on the day I am taking her shopping, I will make sure she is sat in her chair properly – yesterday she had slid down and I believe she had been like that for a while because of the state she was in when I got there. Once agitated mum can’t explain herself and the frustration just grows and grows. If mum is still having problems when I try to take her out for lunch next week I will then ask for her to be looked at, she is on 30 minute checks so I can get a detailed record of her behaviour and this might highlight any problems. Mum sometimes does not take her medication and she is not really on anything for the dementia because they have only just decided that she has it, although she has suffered in this way for over 6 years, neglect at the last home prevented appropriate care. I think as a last resort if her moods are preventing her from having a decent quality of life medication will have to be looked at. She is so lovely when she is smiling and it’s horrible to watch her so upset and angry.

I’m just going to take into mum all the things that make her happy and keep a close eye on things to see if I can find an underlying problem. Mum’s meds for pain have recently been increased and she was doing great but I have heard that people with vascular dementia can suddenly change and if there is no other reason perhaps I have to accept this is her now... I don’t know yet, I just know it’s difficult sometimes when all you want to do is your best and sometimes there are no right answers. Mum is in the process of getting a new chair and hopefully this will stop the slipping forwards that she does because this makes her really uncomfortable. Mum always loved driving (by that I mean sitting in a car just being driven around) and a month ago, just before this behaviour change happened they stopped her from going out in a car unless she had several people with her, because it is difficult to gather another two people up at a time when mum is capable of travel (she has small windows of opportunity when she is not tired etc) she has not been driven anywhere since, she normally comes home and I wonder if she is angry with me because she misses this, she does not understand it is out of my hands at the present time. I was thinking of buying her a car so that my family can pick her up and drive her about instead of ring and ride or a taxi and that way I can have all her things to hand so I can take care of her. I just have to wait and see what is going on before I make any firm decisions.

Thanks for the kind words I must have sounded all over the place yesterday, I probably was... I have not even had enough time to read up on this or anything yet as we’ve only known for a month or so and are still trying to understand it.

I feel for you all too, I know each situation is different and each one comes with its own unique set of difficulties and I think it’s about finding a balance. Yes perhaps there may be a time comes when it is no longer safe to take mum out or perhaps I will always end up taking her back home mid mood swing, I don’t know, but understanding this is important as is accepting it, but more important is knowing that I’m not alone. I’ll let you know what happens next week when I attempt the next shopping trip, fingers crossed it’ll go ok.

 

[KatieB]

Hello, I have just been reading your posts and i have to say that you are a very caring daughter, I'll bet your mum would be very proud if she know how much you cared. I don't take my mum out anymore. She is severely disabled and taking her out causes more stress than any good. Now it's all about keeping her safe, comfortable in her enviroment and talking to her. i think it's all about acceptance on our part. I have been trying to keep things "normal" for such a long time and I had an epiphany, things aren't normal, our situation is what it is and we have to adapt. Since thinking this way, I have become less stressed and my visits are more enjoyable. I hope things begin to settle for you very soon. Love Katie

 

[jeany123]

I hope it goes well for you both next time,my husband used to get very bad tempered when I took him out in his wheelchair then I realised a bit of the metal side rail was sticking in him and got uncomfortable after a time ,I covered the offending part with a sponge and wrapped a bandage tightly round this and now he can sit in his wheelchair comfortably and doesn't get so grumpy .it could be something as simple as this that is upsetting your mum ,good luck and best wishes

Jeany x

 

[carolmay]

I understand

I know exactly what you're going through, my dad is the same and I know how it feels to be the only one going through this hell, I wish I had some answers to give you but up to now I hav'nt found the answers myself, all I can say is try to stay strong yourself because it's very easy for it to drag you down and it's very hard to get back up again.
Take some comfort in the fact that you are not alone, sadly we are part of a huge family of people in the same situation and all we can really do is comfort one another and provide support when times are really hard. I tell myself that I need to be strong for my dad as he can't be strong for himself.
I hope things get a little better for you soon.
Take care .
carol

 

[leedsfan]

Thank you all, yesterday was a real bad day... I made a plan of action last night which made me feel a bit better, though it still hurts. It does make such a difference knowing people are here... sometimes that is all you need.

I was told that the reason mum might be unhappy is because she was only just showered before I came to collect her. Usually mum likes to go out, usually she loves it, I wave her handbag and her boots she grins and gets excited. I’m not used to her being already agitated when I arrive. I have noticed that of late she seems to have closed down a few more of the ‘windows’ I call them, I always say she lives small loops of memory and sometimes these change when another routine is collected into a loop and she seems to live there for a while. Hope you can understand that. In an effort to communicate with her I have sort of introduced routines and objects such as her handbag that I show her when we go out. Anyway, I have decided that next week I will tell them not to shower her on the day I am taking her shopping, I will make sure she is sat in her chair properly – yesterday she had slid down and I believe she had been like that for a while because of the state she was in when I got there. Once agitated mum can’t explain herself and the frustration just grows and grows. If mum is still having problems when I try to take her out for lunch next week I will then ask for her to be looked at, she is on 30 minute checks so I can get a detailed record of her behaviour and this might highlight any problems. Mum sometimes does not take her medication and she is not really on anything for the dementia because they have only just decided that she has it, although she has suffered in this way for over 6 years, neglect at the last home prevented appropriate care. I think as a last resort if her moods are preventing her from having a decent quality of life medication will have to be looked at. She is so lovely when she is smiling and it’s horrible to watch her so upset and angry.

I’m just going to take into mum all the things that make her happy and keep a close eye on things to see if I can find an underlying problem. Mum’s meds for pain have recently been increased and she was doing great but I have heard that people with vascular dementia can suddenly change and if there is no other reason perhaps I have to accept this is her now... I don’t know yet, I just know it’s difficult sometimes when all you want to do is your best and sometimes there are no right answers. Mum is in the process of getting a new chair and hopefully this will stop the slipping forwards that she does because this makes her really uncomfortable. Mum always loved driving (by that I mean sitting in a car just being driven around) and a month ago, just before this behaviour change happened they stopped her from going out in a car unless she had several people with her, because it is difficult to gather another two people up at a time when mum is capable of travel (she has small windows of opportunity when she is not tired etc) she has not been driven anywhere since, she normally comes home and I wonder if she is angry with me because she misses this, she does not understand it is out of my hands at the present time. I was thinking of buying her a car so that my family can pick her up and drive her about instead of ring and ride or a taxi and that way I can have all her things to hand so I can take care of her. I just have to wait and see what is going on before I make any firm decisions.

Thanks for the kind words I must have sounded all over the place yesterday, I probably was... I have not even had enough time to read up on this or anything yet as we’ve only known for a month or so and are still trying to understand it.

I feel for you all too, I know each situation is different and each one comes with its own unique set of difficulties and I think it’s about finding a balance. Yes perhaps there may be a time comes when it is no longer safe to take mum out or perhaps I will always end up taking her back home mid mood swing, I don’t know, but understanding this is important as is accepting it, but more important is knowing that I’m not alone. I’ll let you know what happens next week when I attempt the next shopping trip, fingers crossed it’ll go ok.

Hi, Just got up this morning and was thinking about where to take Dad for lunch, parking the car can be a bit of a nightmare need to be able to park close to venue as Dad can't walk very far, on the flat ie. not against a kerb as he can't get out of the car and I can't really help much as he weighs about 20 stone. Does the venue have a disabled loo as hes too big and immobile for ordinary size cubicles? This is just the start of my day and already I am considering all this stuff. Had a row with my husband last night and hes just gone off to work having been given the cold shoulder from me. How this awful illness impacts on all areas of our own lives but especially with people we love. I'll phone him in a minute when he gets into work and tell him I'm sorry for my outburst last night. Hope your next visit isn't so stressful for your. I think you sound like an amazing daughter. You are doing your absolute best. Take Care. Love and thoughts Jane