Mum needs more care at home

[chezzie]

Hello this is my first post. My husband, sister and myself have maintained mum in her own home for the past eight years with escalating input. Prior to that I helped care for my dad because of health needs. When he died mum's dementia became apparent. Her ability to manage personal care is becoming a real issue and she recently had a fall. The strain is now catching up, trying to balance work with caring. A year ago I arranged for agency staff to come for an hour four times a week to do her tea; this was to get her used to the idea of having people other than us looking after her. She is very accepting of this.

Like many of you we have to assist with bathing, going to the loo etc. I'm finding I'm getting very tired, and increasingly anxious about her when we are not there. We live very near but unable to be with her 24/7. Her needs are increasing but as yet is not at the point of needing to go into a home. I feel guilty about the prospect of entrusting her bath and bedtime routine to others and increasing the agency in put during the day.

Any change in routine really upsets her and I feel she is too vulnerable. I recognise I'm getting anxious and stressed about this next phase of her care but feel I have to pursue it for sake and mine. Has anyone any advice or encouragement?

 

[Izzy]

Hi Chezzie and welcome to TP.

I was wondering if your mum has had an assessment of needs or if she has if it's up to date. This process is called a Community Care Assessment and part of it is a Carer's Assessment. This fact sheet describes the process -

http://www.alzheimers.org.uk/site/scripts/download.php?fileID=1812

It sounds as if you really need more help for your mum and for yourself.

 

[gillybean]

Chezzie, it seems we are in a very similar situation.

My Dad died from dementia DLB 4 years ago and Mum was diagnosed in November. She saw a SW this week, no assessment done nor will they do one until she is at the stage of no longer self funding.

I too live nearby but find my weekends and day off in the week are taken so I am finding the balance hard. I no longer leave the answer phone on as I don't want to come home from work to loads of messages, exhausted after work as it is.

My one brother is disabled, I am also his POA and we are currently mid-crisis with his care package being cut back so I have this responsibility too oh and a family!

The difference is that Mum is un accepting of help, I have just organised a cleaner, she starts next week, we have talked about a tea time helper going in as she weighs just 5.75 stone and not eating as she should. I intend like you to introduce people slowly. I like you feel guilty, she like most people in her situation is very vulnerable and this scares me. I don't know what else I can do. She is in her own home and at some point she will need full time care.

Sorry I have no advice, just wanted to let you know you're not alone I'm just like you.

Best wishes

 

[Starshinegirl1]

Hi welcome! I too live near my mum, it's a blessing and a curse, it eats your own life and changes your marriage and family dynamics. My husband was suffering from diabetes symptoms but I didn't really see it till he was really quite unwell, I feel so guilty I was concentrating on mum. Could you perhaps double up with a carer to get her used to someone else there? u need extra help or u will burn out. All I would say is this is a long game and you have to be a wife a mother a sister an employee and your mother would want you to be all this too, so try to be objective and kind to yourself . The guilt is terrible and u want advice from the very person who cannot help you, it's heartbreaking. Thinking of you and sending positive vibes x

 

[Slother]

Hi welcome! I too live near my mum, it's a blessing and a curse, it eats your own life and changes your marriage and family dynamics. My husband was suffering from diabetes symptoms but I didn't really see it till he was really quite unwell, I feel so guilty I was concentrating on mum. Could you perhaps double up with a carer to get her used to someone else there? u need extra help or u will burn out. All I would say is this is a long game and you have to be a wife a mother a sister an employee and your mother would want you to be all this too, so try to be objective and kind to yourself . The guilt is terrible and u want advice from the very person who cannot help you, it's heartbreaking. Thinking of you and sending positive vibes x

Ditto what starshinegirl said. My heart is with you. The guilt can be very overwhelming, ask me how I know

 

[chezzie]

Chezzie, it seems we are in a very similar situation.

My Dad died from dementia DLB 4 years ago and Mum was diagnosed in November. She saw a SW this week, no assessment done nor will they do one until she is at the stage of no longer self funding.

I too live nearby but find my weekends and day off in the week are taken so I am finding the balance hard. I no longer leave the answer phone on as I don't want to come home from work to loads of messages, exhausted after work as it is.

My one brother is disabled, I am also his POA and we are currently mid-crisis with his care package being cut back so I have this responsibility too oh and a family!

The difference is that Mum is un accepting of help, I have just organised a cleaner, she starts next week, we have talked about a tea time helper going in as she weighs just 5.75 stone and not eating as she should. I intend like you to introduce people slowly. I like you feel guilty, she like most people in her situation is very vulnerable and this scares me. I don't know what else I can do. She is in her own home and at some point she will need full time care.

Sorry I have no advice, just wanted to let you know you're not alone I'm just like you.

Best wishes

Hi gillybean, I'm so sorry to hear about the difficulties you are going through. It was good of you to take the time to reply to me. Mum has been accepting of the tea time visits from the care agency and they have a great attitude towards her. Before the visits I made sure that they understood mums personality and likes/ dislikes in terms of food and how to present it to her etc. They follow my brief and always write a comment about the visit and if there were any problems. Recently they wrote that mum was not usual self and was in - communicative which worried me. When I thought about it I realised she was unsettled because it had been her birthday the day before and all the comings and goings of family had thrown her off kilter. She was probably just very tired and was ok the following day.

I am meeting with the care manager of the agency today to discuss more care - "gulp" I know it needs to happen but heavens I'm nervous. I hope things improve care wise for your mum. Take care

 

[chezzie]

Hi welcome! I too live near my mum, it's a blessing and a curse, it eats your own life and changes your marriage and family dynamics. My husband was suffering from diabetes symptoms but I didn't really see it till he was really quite unwell, I feel so guilty I was concentrating on mum. Could you perhaps double up with a carer to get her used to someone else there? u need extra help or u will burn out. All I would say is this is a long game and you have to be a wife a mother a sister an employee and your mother would want you to be all this too, so try to be objective and kind to yourself . The guilt is terrible and u want advice from the very person who cannot help you, it's heartbreaking. Thinking of you and sending positive vibes x

Hello starshinegirl. Thank you very much for your supportive words. It really helps to know that others are going through similar situations. You are right I need to be more objective and not see myself/ the situation in such a negative light. Meeting with care manager of agency later to discuss increase in visits including some bedtimes at weekends.... Nervous.

Take care of yourself.

 

[Lindy50]

Hi welcome! I too live near my mum, it's a blessing and a curse, it eats your own life and changes your marriage and family dynamics. My husband was suffering from diabetes symptoms but I didn't really see it till he was really quite unwell, I feel so guilty I was concentrating on mum. Could you perhaps double up with a carer to get her used to someone else there? u need extra help or u will burn out. All I would say is this is a long game and you have to be a wife a mother a sister an employee and your mother would want you to be all this too, so try to be objective and kind to yourself . The guilt is terrible and u want advice from the very person who cannot help you, it's heartbreaking. Thinking of you and sending positive vibes x

Oh, I could have written this myself - except that I'm too exhausted to write much. And the exhaustion in itself changes who I am and my role in the family. My husband and adult daughter went to the cinema last night, for example. I didn't go, although "normally" I would (what's "normal" any more? ) This goes on and on and I feel I'll be too old to do anything by the time it's all over.....

Yet I do love mum and won't stop looking after her......

Sorry to sound so miserable

 

[bilslin]

Hi to all you girls what you've posted on this thread might have been me typing it. Thinking of you all. I often think on the same lines that I will be to old and ill to get on with the rest of my life when this journey ends. Just feel drained and sad to. Keep trying to look forward as best I can. What an illness it affects everyone around it. My marriage my kids everything. thank goodness for TP. lindaxx

 

[gillybean]

Rubbish isn't it?

All caught in the 'sandwich' generation, pulled between children, parents, work and being tired and exhausted all the time, no one warned me it would be like this!

Sometimes I want to just run away!

 

[Bramble68]

Hi everyone

You all sound exhausted and frustrated in equal measure, I can't add anything except some virtual hugs - this will be us before too long. We're in a sandwich, too - mum with dementia, hubby, adult son and 2 very young children - tiring as it is, never mind having to go to mum's every day! I administer her tablets, check whether the cat's been fed (and mum's eaten!), check fridge/cupboard contents, pay bills...and this is when our intervention is still quite low key.

We're just managing for now, really hope mum's progress is slow, so we can keep up with the changes.

Do look after yourselves as much as you can, but I know it's easier said than done!

A xo

 

[chezzie]

Hi everyone thank you again for supportive messages. I met with the care manager and extra visits will be out in for teas but they can't accommodate the bedtime slot ( at the moment) at the time we needed over the weekends that we had envisaged. To be honest part of me is slightly relieved at this because it feels a very big step! But having a morning visit 7 days a week to get mum " turned round" for the day. I'm hoping that the time I would normally spend on the cleaning up, restoring order etc etc... Basically sorting whatever I'm confronted with.. Will be time I can just " be" with mum and hopefully be more relaxed with her. So I'm feeling a bit more positive about facing the future and just need to get on with it because although things are not going to improve dramatically, at least I have confronted some " stuff".

On another note...
The tv is mums main focus because she can't read to participate in much these days. Does anyone else despair withe the appalling stuff that's on in the mornings? Crime/emergencies/ general seedy side of life that's on offer? In my wilder moments I imaging going on Dragons Den with my amazing media ideas for people with Dementia. A programmable channel with mums favourites from yester - year! Oh and I wish someone would invent a dementia friendly remote control. The ones I've seen are still too complicated for mum.

Off to put mum to bed now.. Night night all

 

[Bramble68]

We've got mum to agree to having a cleaner once or twice a week (someone we all know, so brilliant), but she keeps saying "I don't know, I like being alone, don't want someone else here" simply because she's always preferred her own company, but we do need someone else to chip in. I think this lady will actually be good for mum, she'll have to talk to her, keep her brain working with conversational changes etc. i'm sure she'll get used to it, and one plus point is that this lady will let us know any problem we've missed, she is absolutely trustworthy, and a very bubbly personality, which I think will lift mum! It will also give me and my siblings a bit more of our limited time (so many other family commitments!) to do nicer things with mum.