First my mother, now my brother

[carolebeech]

Hello I am new to this forum and though I have been watching for a while, I joined last night. I use an iPad and have found some difficulties navigating how to post threads etc. I am sure I will get the hang. But any tips will be greatfully recieved.

Like everyone I can’t quite believe I am in this situation and mostly, I am making it up on how to deal with it. Firstly my 92 year old mum has vascular dementia and needs 24/7 attention. She lives with my brother and myself (we are in our 60’s)and we all share a lovely home. Neither my brother nor myself are married or have family to call upon. We have a couple of good friends and that’s about all I can call on for emergency help. On New Year’s Day my brother (aged 66) woke up lost.


It seems he also has developed Vascular Dementia but at an alarming rate. (The Doctor cannot officially diagnose this and is somewhat shocked at the speed of decline) Trying to get emergency appointment at the Memory Clinic is just not happening and they have just confirmed the 28th March. A life time away with the rate he is deteriorating everyday. He has totally lost any present awareness can’t really retain anything said or experienced. The last 10years of his life seemed to have been wiped and he just continually mixes days and events from the past with the now. We are self funding so I can’t nor do I trust any help from Social Services after their involvement with my mum. They have abandoned Mum since we went for Direct Payments no health checks or social service contact about her welfare.

Any tips on how to deal with my brothers decline would be gratefully received. He is very hyper-active, continually asking questions or talking mostly about things that did not happen (maybe they are from the past) as if they are current. It is not just one memory but as if his whole past life is cascading through in mind, all jumbled with the present. Mostly I deflect or try to re-direct him but this does not always work. He also engages with my Mum into this surreal world and confuses her more. Sometimes she joins in with the fantasy and I am left feeling the one who has a problem with reality. I am exhausted with his energy and as he seems to have lost directing himself follows me around constantly.

The worst moments are at bed-time when my Brother starts hunting for tablets he must have taken in the past. He gets obsessed with trying to find them, turning all lights in the house on and search cupboards and drawers getting more frustrated and annoyed as I can’t help. It can take over 2 hrs before I can get him upstairs to bed and even then he continues throughout the night hunting for these non-existent tablets. I have tried lots diversions but to no avail. I don’t think a placebo would work as he does take some prescribed tablets in the evening already. I also have a letter from the Doctor listing his medication plus telling him not to take any other tablets. This still does not satisfy him. Mornings are also a problem with the same search but I am able to deflect him more with going for a walk or sorting breakfast out.


At the moment I am exhausted both through the situation, lack of sleep and the seeming lack of support from the NHS.

Any tips or suggestions I would welcome.

Thanks

 

[karaokePete]

Hello @carolebeech, you are welcome here.

My goodness, that's a difficult situation. As you don't want to work with social services I would stress the necessity of working with the GP - maybe they could arrange some help from a CPN.

Otherwise you may get some advice from our own help line or the Admiral Nurses helpline, details for the first and a link to the other are as follows

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm


https://www.dementiauk.org/

 

[carolebeech]

Thanks for your reply. It’s not that Indon’t want to work with Social Services it is as soon as you say you are self funding they leave It to you to sort out. The reason we went for Direct Payments with Mum was that the agency awarded the contract to look after mum where dreadful. On their very first day of care they gashed my mums leg rushing her on the commode. Two days later I walked in on another carer swearing at my mum, they continually failed to dress her properly and worst of all missed all her calls on two weekends. We did report them and all our complaints were upheld but it gave me no faith when contracts are awarded via cost rather than ability to deliver care.
This new nightmare scenario for me now that my brother has developed dementia at time s seems insurmountable. I am quite an efficient and capable person. I am good at organisation and doing things I have put into action application for lasting POA, have sorted out that all bills to the home are being paid and try and find activities for both my Mum & my Brother to engage in. I have fully consulted the Doctor and since New Year have been to the surgery at least twice a week if not more. The Doctor has put in emergency requests but the 1st appointment is not until the 1st March (4 months from the request by the Doctor) I have phoned both clinics and Centres directly begging for earlier appointments but to no avail. I have visited A&E with my brother who at the time was very confused he got taken to a ward but then discharged after 4 hours. With no follow up support, they did not even send any documentation to the Doctor.
I feel that there really is no support out there for this situation. I have looked at the option of putting my mum in a home but that would devastate me more than the effort of looking after her. My brother is totally unaware of his illness, not that he won’t acknowledge it he just forgets and says he feels fine. He keeps trying to do things as he always did but suffers from some kind of brain freezes with make him flail about, dropping anything he is carrying. glasses, crockery, milk bottles etc.
Sorry about this negativity but I feel just so alone dealing with it all.
I have phoned help lines but again everyone very sympathetic and I have followed some suggestions but no one can solve the issues and until we get some medical help for my brother. Again everyone says I need to look after my self but how do you do that when it’s 24/7. And though we are self funding we just get by on our small pensions to pay bills on our home so ther is not much spare to buy in any help.
Thankyou for replying and I will keep reading the forums for any help.
Best wishes
CaroleBeech

 

[carolebeech]

Thanks for your reply. It’s not that Indon’t want to work with Social Services it is as soon as you say you are self funding they leave It to you to sort out. The reason we went for Direct Payments with Mum was that the agency awarded the contract to look after mum where dreadful. On their very first day of care they gashed my mums leg rushing her on the commode. Two days later I walked in on another carer swearing at my mum, they continually failed to dress her properly and worst of all missed all her calls on two weekends. We did report them and all our complaints were upheld but it gave me no faith when contracts are awarded via cost rather than ability to deliver care.
This new nightmare scenario for me now that my brother has developed dementia at time s seems insurmountable. I am quite an efficient and capable person. I am good at organisation and doing things I have put into action application for lasting POA, have sorted out that all bills to the home are being paid and try and find activities for both my Mum & my Brother to engage in. I have fully consulted the Doctor and since New Year have been to the surgery at least twice a week if not more. The Doctor has put in emergency requests but the 1st appointment is not until the 1st March (4 months from the request by the Doctor) I have phoned both clinics and Centres directly begging for earlier appointments but to no avail. I have visited A&E with my brother who at the time was very confused he got taken to a ward but then discharged after 4 hours. With no follow up support, they did not even send any documentation to the Doctor.
I feel that there really is no support out there for this situation. I have looked at the option of putting my mum in a home but that would devastate me more than the effort of looking after her. My brother is totally unaware of his illness, not that he won’t acknowledge it he just forgets and says he feels fine. He keeps trying to do things as he always did but suffers from some kind of brain freezes with make him flail about, dropping anything he is carrying. glasses, crockery, milk bottles etc.
Sorry about this negativity but I feel just so alone dealing with it all.
I have phoned help lines but again everyone very sympathetic and I have followed some suggestions but no one can solve the issues and until we get some medical help for my brother. Again everyone says I need to look after my self but how do you do that when it’s 24/7. And though we are self funding we just get by on our small pensions to pay bills on our home so ther is not much spare to buy in any help.
Thankyou for replying and I will keep reading the forums for any help.
Best wishes
CaroleBeech

 

[canary]

And though we are self funding we just get by on our small pensions to pay bills on our home so ther is not much spare to buy in any help.

You should not have to pay for anything yourself - it should be paid for only by the person who is receiving the care ie carers for your mum should be paid for from your mums money and carers for your brother should be paid for from your brothers money. If he doesnt have the funds then he should not be self-funded - only people with over £25,000 of assets are considered self-funding.

 

[carolebeech]

Is this to much info for help

 

[carolebeech]

You should not have to pay for anything yourself - it should be paid for only by the person who is receiving the care ie carers for your mum should be paid for from your mums money and carers for your brother should be paid for from your brothers money. If he doesnt have the funds then he should not be self-funded - only people with over £25,000 of assets are considered self-funding.

Unfortunately we own a loveLy house and our pensions just go beyond the threshold for help

 

[canary]

Unfortunately we own a loveLy house and our pensions just go beyond the threshold for help

Thats not his assets - I am assuming that its owned jointly, Houses are also disregarded all the while the person receiving care is living in it, or a close relative over the age of 60 (ie both you and your mum) are living there. His pension counts, but yours and your mums do not.

Equally, for your mum, the house will be disregarded and only her pension and savings will count.

 

[carolebeech]

Thats not his assets - I am assuming that its owned jointly, Houses are also disregarded all the while the person receiving care is living in it, or a close relative over the age of 60 (ie both you and your mum) are living there. His pension counts, but yours and your mums do not.

Equally, for your mum, the house will be disregarded and only her pension and savings will count.

Thanks for that. My brother & myself own the house. I am not worried about Mum cause I can cash my pension to pay for her support. I just want some medical advice. Today my brother had 10 seizures all lasted about 1 .30 mins. Very minor but he threw hot tea over himself, chucked cat food all over the wall and now denying any think happened. When will someone observe what I continually see and experience. No doubt another nighttime tablet debacle.
Thanks to all advising
Carole beech

 

[Susan11]

Thanks for that. My brother & myself own the house. I am not worried about Mum cause I can cash my pension to pay for her support. I just want some medical advice. Today my brother had 10 seizures all lasted about 1 .30 mins. Very minor but he threw hot tea over himself, chucked cat food all over the wall and now denying any think happened. When will someone observe what I continually see and experience. No doubt another nighttime tablet debacle.
Thanks to all advising
Carole beech

Hi Carole Please don't cash your pension to pay for your Mum's care. It is definitely not the right thing to do . Allow your Mum's assets to be assessed and see what the council will provide. You may have to top up to get exactly what you want at sometime but that is a fraction of what the total cost could be . I'm sorry I can't help with advice regarding the fits. I'm sure some one else will have the experience to help you . Best wishes Susan

 

[carolebeech]

Hi Carole Please don't cash your pension to pay for your Mum's care. It is definitely not the right thing to do . Allow your Mum's assets to be assessed and see what the council will provide. You may have to top up to get exactly what you want at sometime but that is a fraction of what the total cost could be . I'm sorry I can't help with advice regarding the fits. I'm sure some one else will have the experience to help you . Best wishes Susan

Thanks so much Susan. Great someone is listening. I just love my mum to bits her lovely smile keeps me going. Even though she has been diagnosed with dementia she still loves her son... who now seems to have same condition. She is 92 and as she will tell you has all her own teeth. My so big worry is getting medical help for my brother. It’s as if no one is listening. Even A&E discharged him. Tonight he has had 11 episodes were he is not aware for at least 1.39 mins. What do I do ! To get anyone to listen.
Thanks again for replies
Carolebeech

 

[Susan11]

Thanks so much Susan. Great someone is listening. I just love my mum to bits her lovely smile keeps me going. Even though she has been diagnosed with dementia she still loves her son... who now seems to have same condition. She is 92 and as she will tell you has all her own teeth. My so big worry is getting medical help for my brother. It’s as if no one is listening. Even A&E discharged him. Tonight he has had 11 episodes were he is not aware for at least 1.39 mins. What do I do ! To get anyone to listen.
Thanks again for replies
Carolebeech

I can only suggest you ring 111 or call out the ambulance again. Sorry this is outside my experience .

 

[nellbelles]

Hello @carolebeech my suggestion also is to phone 111 and say you need an urgent medical assessment for your brother you certainly cannot continue to oversee his care on your own

 

[carolebeech]

Sorry for that.cry for help. Everyone now in bed. It’s just such an never ending nightmare..walking on egg shells. My brother would never want to upset me so much and I understand it is his condition but it’s just so scary and out of the known. I don’t think 111 would do anything as the scary bits are episodic. If about 4 times an hour. I just don’t know how to get him observed and then diagnosed. I have read so much about all forms of dementia and though I think he has developed this disease his symptoms just go so far beyond and so quickly. The Doctor is testing blood and urine every week but nothing seems to show why the symptoms are so extreme. That is the scary bit for me.
I am so sorry I have introduced myself to the forums with so much woe. It’s just I feel so alone and unable to get anyone to listen.
Sorry

 

[nae sporran]

Welcome to the forum @carolebeach. Sorry you're having such a hard time at the moment. You shouldn't feel guilty about introducing yourself with woe, that is what the forums are here for. I hope it is settling down for you now and you can get some rest.

 

[Lynmax]

Would it be possible for you to film your brother while he is having an episode using your phone? You could then show this to your GP or a consultant.

I think you ought to approach Social Services again for an assessment of your brothers needs, once you split your joint assets, you might find they will be forced to step in.

 

[archiebald]

Sorry for that.cry for help. Everyone now in bed. It’s just such an never ending nightmare..walking on egg shells. My brother would never want to upset me so much and I understand it is his condition but it’s just so scary and out of the known. I don’t think 111 would do anything as the scary bits are episodic. If about 4 times an hour. I just don’t know how to get him observed and then diagnosed. I have read so much about all forms of dementia and though I think he has developed this disease his symptoms just go so far beyond and so quickly. The Doctor is testing blood and urine every week but nothing seems to show why the symptoms are so extreme. That is the scary bit for me.
I am so sorry I have introduced myself to the forums with so much woe. It’s just I feel so alone and unable to get anyone to listen.
Sorry

Hi before my husband was diagnosed with early on set Alzheimers he nevet haf s days illness in the 33 years we have been together about 5 years ago I noticed changes in him anxiety terrible nite sweats not sleeping had two collapses over a period of time so got him to doctor I had to ask that he be seen by consultant originally doctor sent him to heart consultant he had blood tests ECG.s tilt test heart monitor nothing showed up he drove a lorry and ad he had collapse his licence was temporarily stopped then after 6 months and nothing he got his licence back and thats when after a while he was forgetting how to get to places he had driven for years so back to doctor head scans lumbar punctures when finally over year layer he was djagnosed with Alzheimers 57

 

[archiebald]

Hi sorry to hear of your situation your having such an awfull time before my husband was diagnosed with early on set Alzheimers he nevet haf s days illness in the 33 years we have been together about 5 years ago I noticed changes in him anxiety terrible nite sweats not sleeping had two collapses over a period of time so got him to doctor I had to ask that he be seen by consultant originally doctor sent him to heart consultant he had blood tests ECG.s tilt test heart monitor nothing showed up he drove a lorry and ad he had collapse his licence was temporarily stopped then after 6 months and nothing he got his licence back and thats when after a while he was forgetting how to get to places he had driven for years so back to doctor head scans lumbar punctures when finally over year layer he was djagnosed with Alzheimers at 57 get your brothers doctor to get him seen by a consultant demand that he does it might be some other condition he has and not dementia and treatable

 

[kindred]

Thanks so much Susan. Great someone is listening. I just love my mum to bits her lovely smile keeps me going. Even though she has been diagnosed with dementia she still loves her son... who now seems to have same condition. She is 92 and as she will tell you has all her own teeth. My so big worry is getting medical help for my brother. It’s as if no one is listening. Even A&E discharged him. Tonight he has had 11 episodes were he is not aware for at least 1.39 mins. What do I do ! To get anyone to listen.
Thanks again for replies
Carolebeech

Please investigate getting an independent social worker. Google them and look for a local one. They cost about £35 an hour, according to other forum posters. This is the one source of real organising help I can suggest. Please consider it.
warmest, Geraldine aka kindred

 

[marionq]

I think too you are not clear about how funding works and just assume you have too much coming in to warrant help. Each person being assisted by social services is assessed purely on their own assets. Does your mother receive Attendance Allowance? Do you receive Carers Allowance? An assessment should help you understand where your position is financially as well as with day to day help.

Don't rush in cashing in your pension or anything else.