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Advice needed and letting off steam.

Nomorepets

Registered User
May 26, 2020
29
Sorry it's a bit long. Am in my 60's caring for my mother in her 90's. I suspected Dementia a couple of years ago but no one took me seriously, they all live on a fluffy happy cloud of ignorance.
It began when my very strait laced mother started swearing, none of the really bad words but all the same, that lasted for a few days and happens very occasionally now. Next came muddled mood swings and, as we have never really got on we argued a lot, still do a bit. Then the falls which we awful, my poor mum covered in cuts and bruises. After about a year battling with her not very good GP practise I was able to get her referred to a memory clinic where she was tested and diagnosed with Vascular Dementia. It was mixed emotions really. But, the lady who we spent most of the appointment with said that she was really shocked as at first my mother seemed fully aware and she thought I was neurotic but, as the appointment went on she realised there was a problem and did the test.
I do feel like screaming when people say that she was alright when they spoke to her but now I point out that they are not actually listening to what she is saying as if they were, they would realise her answers are neutral and she says things like "oh well, it's old age" or "nice of you to call". No actual conversation.
I live nearly 300 miles away, but as had to stop work to be her carer, have been staying here on and off for past year and totally since lockdown as had hoped to move her to my home, but wasn't quick enough. In the last 3 or 4 months she has gone rapidly downhill, refusing to eat or drink to the extent she ended up in hospital after losing a huge amount of weight over a matter of weeks.
There are good days and bad days, often saying that she wants to die but hopefully would not take her life. One day can be alert on and off, spends most of the day asleep or sometimes doing things, might do some sweeping or will move things from place to place, bring rubbish back into the house. Dirty washing gets hidden discovered that by the smell, now search her room daily. No interest in anything, weirdly leaves little bits of tissues all over the place, constantly asking the same questions over and over. Oh, and she holds her skirt up as if paddling.
I do think lockdown has made her worse. I am having sensors/alarms on the doors as she keeps wanting to go out with her walker but forgets where she is going. I wait all day for her to go to sleep at night as that then is my time to relax. I sleep listening for movement and wake in the morning dreading what I might find. I'm sure far too many are dealing with similar lives. I feel it is time to consider respite or permanent care but she wants to live with me or be in a home near me.
If she goes into to a home near her home, I will have to stay here but that causes another problem in that my invisible brother is already eyeing up moving here with his family, probably so that he can force things when she does pass away. Also, I need to go home as I have been away for too long and check it is ok, mum cannot make the journey so I either go for respite care or have carers and meals on wheels coming in as not safe to use a cooker.
Are bits of the above sounding familiar, I suppose that's what I need to know. I've already told my offspring to put me in a home and walk away when the time comes as I wouldn't wish the way I feel on anyone. Do I carry on as is or do I find a care home? I feel selfish even considering it as she would move heaven and earth to keep me safe. The cruelty of Dementia is heart wrenching. Apologies for the rant.
 

Gerona

New member
Mar 25, 2020
5
Don’t feel guilty....you are doing more than anyone should expect....and people who are not directly dealing with this awful illness do not fully understand. My 87 year old husband (I am nearly 74) was diagnosed nearly a year ago with mild alzheimers, and is still very alert, though I know the difference. Under the circumstances of this lock-down we are comfortable and the days pass quickly, but he is still only interested in the things he us missing...I.e....golf being one. Has no empathy for the difficulties of the rest of the country/world coping, and it makes me very irritated, then I feel guilty....He has always been a kind person, but his ability to think about anything else but himself is slowly slipping away.. He has family who adore him and gets plenty attention with FaceTime etc, but my frustration/guilt at my lack of understanding is making me feel like a monster when I snap at him.....or speak harshly.....so believe me compared to me you are an angel. Take care, and I hope your decisions are helped with your family’s help. . Keep safe.
 
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Palerider

Registered User
Aug 9, 2015
2,021
North West
Sorry it's a bit long. Am in my 60's caring for my mother in her 90's. I suspected Dementia a couple of years ago but no one took me seriously, they all live on a fluffy happy cloud of ignorance.
It began when my very strait laced mother started swearing, none of the really bad words but all the same, that lasted for a few days and happens very occasionally now. Next came muddled mood swings and, as we have never really got on we argued a lot, still do a bit. Then the falls which we awful, my poor mum covered in cuts and bruises. After about a year battling with her not very good GP practise I was able to get her referred to a memory clinic where she was tested and diagnosed with Vascular Dementia. It was mixed emotions really. But, the lady who we spent most of the appointment with said that she was really shocked as at first my mother seemed fully aware and she thought I was neurotic but, as the appointment went on she realised there was a problem and did the test.
I do feel like screaming when people say that she was alright when they spoke to her but now I point out that they are not actually listening to what she is saying as if they were, they would realise her answers are neutral and she says things like "oh well, it's old age" or "nice of you to call". No actual conversation.
I live nearly 300 miles away, but as had to stop work to be her carer, have been staying here on and off for past year and totally since lockdown as had hoped to move her to my home, but wasn't quick enough. In the last 3 or 4 months she has gone rapidly downhill, refusing to eat or drink to the extent she ended up in hospital after losing a huge amount of weight over a matter of weeks.
There are good days and bad days, often saying that she wants to die but hopefully would not take her life. One day can be alert on and off, spends most of the day asleep or sometimes doing things, might do some sweeping or will move things from place to place, bring rubbish back into the house. Dirty washing gets hidden discovered that by the smell, now search her room daily. No interest in anything, weirdly leaves little bits of tissues all over the place, constantly asking the same questions over and over. Oh, and she holds her skirt up as if paddling.
I do think lockdown has made her worse. I am having sensors/alarms on the doors as she keeps wanting to go out with her walker but forgets where she is going. I wait all day for her to go to sleep at night as that then is my time to relax. I sleep listening for movement and wake in the morning dreading what I might find. I'm sure far too many are dealing with similar lives. I feel it is time to consider respite or permanent care but she wants to live with me or be in a home near me.
If she goes into to a home near her home, I will have to stay here but that causes another problem in that my invisible brother is already eyeing up moving here with his family, probably so that he can force things when she does pass away. Also, I need to go home as I have been away for too long and check it is ok, mum cannot make the journey so I either go for respite care or have carers and meals on wheels coming in as not safe to use a cooker.
Are bits of the above sounding familiar, I suppose that's what I need to know. I've already told my offspring to put me in a home and walk away when the time comes as I wouldn't wish the way I feel on anyone. Do I carry on as is or do I find a care home? I feel selfish even considering it as she would move heaven and earth to keep me safe. The cruelty of Dementia is heart wrenching. Apologies for the rant.
Hello @Nomorepets and welcome to the forum.

All of what you have said is very familiar to many on here. If you take the time to read through some of the threads you will soon see these problems are repeated over and over. Dementia is a cruel disease and caring for someone with dementia can become all consuming. I tried very hard to keep mum at home, but in the end it proved an impossible task, I felt terrible not being able to carry out her wish and still do now.

The decision to move to 24/7 care can be difficult, but I think its down to what you can provide in the home, what support you would have in the home and the ability to cope with a disease that will make more and more demands of you as you try your best. I see already you are at the stage of sleeping with one eye open, and finding it harder to get any respite in the day as well all the other strange things people with dementia (PWD) do. Much of what you wrote about behaviour is quite common and there has been a thread on TP about tissues. believe it or not. I found reams of tissue and toilet paper neatly folded in all sorts of places. And I can identify with the clothes being hidden etc etc. It might be time to get mum assessed by social services, and to think about the best way to move forward as things will only get worse with what is a progressive disease and caring from a distance becomes impossible. As the disease advances it will become ever more challenging and it will also run the risk of making youself ill, which happened to me last year.

Like you I had problems with my invisible brother and still do, but we have to draw lines in the sand on what we will contend with in terms of acceptable behaviour. Mum had the sense to sort out Lasting Power of Attorney (LPA) before her dementia took away her capacity. Doyou have an LPA? It might be too late now for your mum to make the decision on who is LPA but there are other options to address this. In terms of your brother moving in, he may get a shock, as you will have to sell the property to pay for your mums care should you decide a care home is the right place for mum to be.

Its a rocky path to walk, and there is no right or wrong way. Its about balancing your mums needs with what you can provide in the home versus moving to a care home and 24/7 care. Respite care is a good way of seeing if it would be amenable to your mum before making a long term decision. The other option is to try carers in the home first. Technology is useful to a point, but in the end it can't replace someone being in attendance 24/7 especially if wandering becomes an issue as well as all the other aspects of daily living -washing, dressing, eating and drinking, elimination and social and mental well being.

I am sure others will be along soon with lots of advice and tips :)
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,861
Nottinghamshire
Welcome from me too @Nomorepets

There is no right way to care for someone with dementia and all of us just muddle through as best we can. I’ve come out the other side as my dad is no longer with us but I remember the stress and emotional exhaustion that went with caring for him. Dad could be difficult but like your mum he would’ve moved heaven and earth for his kids so I felt I had to do my best to keep him happy in his home. My siblings were invisible for the most part so it was all left to me.
When I got carers for him it was a massive relief and dad enjoyed their company but it wasn’t long before he needed 24/7 supervision so had to go into a carehome. I thought he’d hate it but he didn’t - he was calmer after he settled and very well looked after. I should’ve moved him sooner instead of struggling and allowing dad to struggle too (which I didn’t realise at the time) then he would’ve had time to make friends.

I understand that it would be a very difficult journey for your mum to make in one day to get to yours perhaps her GP could suggest the best way to do this if you decide to. I would also like to add that moving someone in dementia can cause increased confusion.

Remember that you matter too and make the best decision for both of you.
 

Weasell

Registered User
Oct 21, 2019
691
If your mother goes into a home the property will Likely need to be sold to fund it, I have worked out my mothers care bill would be 62 thousand pounds a year.
Do not underestimate the life expectancy of this generation of old people.
Is mum on Attendance Allowance, are you claiming every benefit that you are entitled to?
I care for my mum of a similar age, she has her wish to remain at home at present, but I always think that life runs me, not me running it, so it is only going to take one bad fall or something to change everything.
I am presuming you share a Power of Attorney with your brother? So often you read posts about warring siblings, so do not let the frustration you must feel show when you talk to him!
I think respite care may be the way forward. It gives you a bit of breathing space. It gives mum a chance to have a ‘ holiday’?
If your mum we’re to pass away in the night then in a way she will have achieved most peoples dream, to live a long life and Depart while sleeping. You could consider a baby monitor with the volume turned to zero, so if you wake in the night you can see she is ok without moving a muscle?
I have lots of technology, I buy it all! One bit that might be nice for your brother would be the Alexa echo show. It might be an idea to print off Granny Gs compassionate communication and give it to your brother as well.
 

Nomorepets

Registered User
May 26, 2020
29
Thank you all for your comments, this morning mum is as bright as a button, not eating but nicely dressed and chatting. I only started looking at these forums last night and there are many similarities which is a comfort.

Gerona you are not a monster just human. The lack of empathy with others must be difficult especially in one who was previously so kind. It's good that you have nice family keeping in touch.
Palerider agree, it can make you ill. In my case 2 T.I.A's partly resulting from the stress of helping to care with two terminal relatives, (I began to think of my car as home), and full time working. I used to think I was superhuman but now realise am just human. It was at that time that someone mentioned Power of attorney for finance. Which my mother also thought was a good idea and arranged one. More recently we read about health and welfare one so have that also while waiting for diagnosis. I have used that against her GP. Some things are just odd and it's nice to know others are dealing with the same things. There's no logic to these behaviours.
I had social services around last year as the memory clinic contacted loads of people on our behalf. They were not very helpful as will be self funding but, this morning I arranged for another assessment thanks to a lovely therapist who visited last week with equipment, he was a godsend. So hopefully something good will come of this one.
I have already told my brother that if they moved in, they would have to move out to cover care home fees. But he is of the kind that thinks he who shouts loudest. Especially as my mum has chosen a couple of care homes and both are scary expensive but provide nursing care if needed. Money is not an issue as at her age time is against her so I would rather spend on getting good care than worry about what's left in the will. My brother and I see this differently but then he has a dominant wife.
We have had the wandering mum which after her disappearing for around 3 hours was the reason I decided to stop working. Especially as she has mobility problems. The emergency pendant company will provide a new package which includes door sensors so I get a message if she leaves, I have also given details to the local police which hopefully will never be needed. I think that there may be a GPS type tracker available with the new emergency pendant package but could be wrong.

Bunpoots - you made me cry. From the moment I was born my Dad made me feel bullet proof, if I was scared and he put his arms around me I would always be safe. I am a daddy's girl and miss him, his wisdom and even his silly jokes so much. Sadly he passed many years ago from cancer, he hated the hospitals and just wanted to come home, we never told him how ill he was and all he knew was that he had picked up an infection in hospital which had made him poorly. My mum and I looked after him using carers for the final months, like you it was a massive relief and we wished we had used them sooner.
Your Dad was very lucky to have you and you, were very lucky he settled into the care home so well. I had to make that decision for my Aunt as she was no longer able to be left alone, she hated the home, she went from a sweet little old lady to a harridan, it was so difficult for her. The home was really nice but she didn't want to live there or anywhere else. It took about 18 months and a lot of effort from all before she settled down but then she was willing herself to die.
I have been worrying about the journey as I think it could have a bad effect but it's a nice drive on a good day. A friend used the St John's Ambulance people to transfer her father when he was ill and they made him very comfortable so I might look into that nearer the time. Her GP is close to useless and long before this I kept suggesting that she change but she was nervous and never did. I have taken her to the GP where I live and they are so much kinder and helpful. I also have good neighbours and people living close by who always come to see her and I think she would settle well but who knows. Nothing can be done now until lockdown is over and things get back to some kind of normality.
Please, all of you, take care and stay safe. Thank you for your support and advice. Much appreciated.
 

Nomorepets

Registered User
May 26, 2020
29
weasell - I have looked into the benefits side of things, mum is on AA but not entitled to anything else due to savings until they have dwindled. The council tax has been zero'd as now classed as severely mentally impaired so that was handy.
My mum's sisters all lived until mid to late 90's so expect similar for her.
The Power of Attorney is not shared with my brother as my mother was against that, she does not want him involved as she dislikes his wife. If anything happens to me, the solicitor has instructions to take over. The solicitor also has notes etc from my mother going back many years which although I have not seen, apparently show she is unwilling to have my brother involved in her finances. The will (if I am still here) will be very interesting, have ear plugs to the ready.
The baby monitor is a good idea, and definitely turning the sound down as she is not a quiet sleeper :)
Regular Alexa has saved my sanity at times with bad jokes and music on demand.
It would be a blessing if she were to be taken during the night, rather than suffering but life is not like that for most of us.
Will look at the link in a bit. Thank you for your comment and suggestions, please take care and stay safe.
 

Weasell

Registered User
Oct 21, 2019
691
It’s a bit random but I love the film Sense and Sensibility! It the way the brother promises to look after the sisters, then by the time his dominant wife has had her way they get nothing! It’s that in many ways so little changes over the centuries!
 

Nomorepets

Registered User
May 26, 2020
29
It’s a bit random but I love the film Sense and Sensibility! It the way the brother promises to look after the sisters, then by the time his dominant wife has had her way they get nothing! It’s that in many ways so little changes over the centuries!
That was funny but true. :))