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[northumbrian_k]

Hi @Teacher212 and welcome to Dementia Talking Point our supportive and friendly community of people who have experience of many aspects of dementia. From my experience these do sound typical behaviours. Often we, as carers, try in vain to get the person with dementia doing something - almost anything - that we feel would stimulate and interest them. But we are looking at this in the light of how the person was, not as they are now that dementia is taking over. I don't want to suggest that you give up trying, but you may have to go for simpler things that don't take much concentration or time. Games that have simple rules (or simplified ones), physical activities such as throwing or catching, colouring books and so on are what my wife preferred when she was still capable.

I hope this helps. Please do come back with any questions, join in with ongoing conversations, or just come here to let off steam. You will find understanding and empathy here.

 

[Gosling]

Hello @Teacher212 and welcome to this forum from me too. I have always found this a very supportive place and am sure you will too.
As @northumbrian_k has said, the behaviours you describe do sound rather typical. My own Mum as the dementia progressed, did/could not concentrate on anything for even a short period of time. It was very disheartening, as before the dementia struck, she was a very 'with it' person, crosswords, reading broadsheets etc.
The colouring books did work for a while, so it may be worth trying that.
Best of luck and do please use the forum as a great place for worthwhile advice. We've all been there! Sadly.

 

[SherwoodSue]

Teacher 212. Sadly I would say a degree of apathy and getting stuck in a rut are common for many folks with dementia. I did persuade mum to do an on line cognitive stimulation course with me, other than that doesn’t want to do much. Same TV progs and books read over and over.
We try to take mum out, sometimes successfully and other times mum seems completely overwhelmed.
When you say she WONT do things to help herself with dementia, could also say because of dementia mum is less interested in doing stuff. The second may help you feel less frustrated?

 

[Susan999]

Hi, my Mother was diagnosed during lockdown with Alzheimer’s. She also has mental health and behavioural problems and my parents had to be separated due to this. Things have been extremely difficult over the past two years. Mum has been living independently with carers visiting 4 times a day. She has refused to take her antipsychotic medication and anti depressants, as she feels this is all she has control of now. This has resulted in delirium and hospital admission twice this year. Mum can also be aggressive and has started to wander. She is currently in hospital atm due to a recent fall. Whilst I was on holiday a MDT meeting was held and they have found a placement for Mum in a nursing home. I went to view the home yesterday and was reduced to tears. I can’t send my Mum there; she is not as advanced as any of the other residents. The hospital have said that I have no choice, as no-one else will take Mum due to her behaviour/aggression. I don’t know what to do and feel heart broken,

 

[canary]

Hello @Susan999

I think it is always a shock when you first visit a dementia home. I felt the same as you, that everyone else was much further on than mum, but once mum had moved in there I realised that actually mum was much further on than I had realised and that actually, she fitted right in. I think its like when your child first starts school and they seem far too young to be there and eveyone else seems much older and bigger than they are.

She has refused to take her antipsychotic medication and anti depressants, as she feels this is all she has control of now. This has resulted in delirium and hospital admission twice this year. Mum can also be aggressive and has started to wander

These are not things that can be dealt with in a domestic setting, and many care homes will refuse them too. Try to look beyond the setting of this home and see the actual care that is going on. The fact that there are residents who are much further on than your mum is good, because it means that they will be able to continue to care for your mum right up to the end. If everyone was at your mums level this would mean that when your mum progressed, they would give her notice to leave, which many homes actually do. I would give this home a chance.

 

[Louise7]

Hello @Susan999 welcome to Dementia Talking Point. This is a friendly and supportive place with a lot of shared experience, and @canary has posted some really good advice. It sounds like your mum requires a high level of care at the moment, and unfortunately that tends to mean that the number of care homes that can meet those needs will be limited, but try not to dismiss out of hand the home offered. My mum is in a nursing home and the residents are a mix of ages, some have dementia and some don't, and those that do are at various different stages of dementia so we know that mum won't need to change homes again. As has already been mentioned, it is the standard of care that is important and that can be difficult to assess during an initial visit. Perhaps pay another visit to the home, and maybe take with someone else with you, and have a chat with the staff and other relatives if you can. It's hard when someone first moves into a care home, and going into a nursing home for the first time as a relative can be difficult, but I found that taking things a day at a time helps as there are a lot of different emotions and it isn't easy.

 

[cbeigle54]

Hi, my name is Tony and it's good to be here. I have been looking for a place to have some questions answered for me as I have concerns regarding family history. So, again, it's good to be here and have a great day

 

[northumbrian_k]

Hi @cbeigle54 and welcome to Dementia Talking Point. You have come to the right place as our friendly and supportive members have a wealth of experience of many different aspects of dementia. If you have specific questions you can start your own thread in whichever forum is relevant to your situation. I am sure that you'll find understanding, empathy and good suggestions.

 

[cbeigle54]

Hi @cbeigle54 and welcome to Dementia Talking Point. You have come to the right place as our friendly and supportive members have a wealth of experience of many different aspects of dementia. If you have specific questions you can start your own thread in whichever forum is relevant to your situation. I am sure that you'll find understanding, empathy and good suggestions.

Thank you, it's good to be here. I've been probably over-thinking my family medical history, but I need to try to find some things out. My dad died of Alzheimer's in 2007, and my mom passed in 2016, with a form of dementia, but not sure which. I have already found a neurologist who sent me for 5 MRI's. I have the results, but honestly don't understand what I'm reading, which adds to the frustration.. And there you have it, is where I am now

 

[Tricot]

I have already found a neurologist who sent me for 5 MRI's. I have the results, but honestly don't understand what I'm reading,

Hello @cbeigle54
5 MRIs is a lot! I wonder why the neurologist felt it necessary. You really are entitled to explanations as to what's going on. It's part of the neurologist's job to explain the results of tests. Please go and see her/him to help put your mind at rest .It must be very worrying for you.

 

[SherwoodSue]

Are you based in UK.? NHS?

 

[cbeigle54]

Hello @cbeigle54
5 MRIs is a lot! I wonder why the neurologist felt it necessary. You really are entitled to explanations as to what's going on. It's part of the neurologist's job to explain the results of tests. Please go and see her/him to help put your mind at rest .It must be very worrying for you.

Honestly, it is, and your mind has a tendency to run away with you. I know that he acted on the lapse of judgment from another doc. But when he ordered them 'stat?' Like I said, your mind just runs away. By the way, while I have you here, can you show me how to post a new post here? I tried to follow the directions given, but got all confuzzled. Thanks, and have a great day.

 

[Sandrag63]

I'm Sandra. My mam my lifelong companion has altzeimers. She is in a care home. She has been there gone 2 year and still I've not come to terms with it. Neither has mam.

 

[Chizz]

Hi my mum has mid stage Alzheimer’s, shes 88 yrs old and apart from her short term memory she’s doing really well. She still lives independently. Is it a slow progress or can people with dementia relapse quickly. I’ve been told that my mum may progress really slow as she was diagnosed 6 years ago and is still able to bathe and cook for herself etc. I would love to receive advice or ideas on things to do to keep my mums mind active etc.
Thank you

Hi @Tracyann61
Have you been in contact with any of the local charities or similar organisations that may deal with people with dementia (PWD)?
In my area Age Uk and separately a local church have "Dementia Cafes" or "Forget-me-Not cafe" where a PWD can go with their carer for a 2 hour session for contact with others, jogsaws, quiz, music and singing, old photos, and memory cards to stimulate memories and conversation etc. Usually you have to register with them as some have limited numbers of places, or even waiting lists. A different church runs a weekly session called Memory Singers with old songs etc.
Dementia UK - look on their website - have various activities including appropriate exercises for fitness for all abilities or none
The Alzheimer's Society has a booklet or online of activities for PWD
Many areas have a "Mens Shed" or ladies' equivalent or day centres with activities (and including lunch, hair washing, etc) (for a charge)
So you see, if you look, I'm sure you'll find activities suitable for your mum. Do try these, because the time during with a PWD can enjoy these activities is limited.
Best wishes

 

[Devonian from WS]

Hi all,
I'm new to the site as feeling like a fish out of water and need some support.
My marriage broke down 4 years ago, and I left the marital home. I was living with husband and his father. After only a year, my husband discovered he couldn't cope with his dad's behaviour, and asked me to move back in, and he would move out. I agreed to this as felt I got on better with his father than he did. We agreed I'd pay no bills in the house, although his dad pays £500 rent every month to include bills, which covers most of the household costs. I do not get paid to care for father in law, but I am responsible for most aspects of his care. He has Vascular Dementia now and is beginning to change, with more stroppy outbursts!
To be honest, I'm struggling. I feel used by my ex husband so that he can go off and live his life with his new woman, while I take on the stresses of caring for his father. Feeling I'll be turfed out when no longer required, very unsettling. I built a garden room to work from, as a therapist, so that I can be close by if father in law needs me.
Any thoughts on aspects of this madness would be much appreciated.

 

[Devonian from WS]

Hi. I live a long-ish drive from my parents, one of whom is suffering with dementia, and the other who is suffering as a result. This reached a crisis point last week when my dad had to call out the ambulance because mum couldn't move out of the armchair, complaining of pain. When he told her the ambulance was coming she got up immediately and stood by the window to wait for them. The rest of this story we're still reeling from. Both my Grandmas had dementia, but nothing prepares you for your mum being the one who disappears before your eyes and becomes someone none of you recognise. In my mum's case she seems to be becoming the worst of her traits and projecting her own father onto my dad. Not good. And feeling quite heartbroken about it. Life is already complex in our household. I wish I could be nearer them, but that would mean moving away from where my children are, and changing every point of contact for my very ill husband's care.

Bless you Sophia, what a heart breaking situation. Can I ask what support you are getting for you? It sounds as though you are juggling all the balls for everyone, but yourself. Are there local community support groups they and you could access? Neighbours who can provide respite, family who can call or call in? I know it's a lonely time, but don't be on your own eh. X

 

[Devonian from WS]

Hi, my Mother was diagnosed during lockdown with Alzheimer’s. She also has mental health and behavioural problems and my parents had to be separated due to this. Things have been extremely difficult over the past two years. Mum has been living independently with carers visiting 4 times a day. She has refused to take her antipsychotic medication and anti depressants, as she feels this is all she has control of now. This has resulted in delirium and hospital admission twice this year. Mum can also be aggressive and has started to wander. She is currently in hospital atm due to a recent fall. Whilst I was on holiday a MDT meeting was held and they have found a placement for Mum in a nursing home. I went to view the home yesterday and was reduced to tears. I can’t send my Mum there; she is not as advanced as any of the other residents. The hospital have said that I have no choice, as no-one else will take Mum due to her behaviour/aggression. I don’t know what to do and feel heart broken,

Bless you Susan, that must be a very difficult dilemma to have. Truth is, your mum may well do better in a home where the staff are better trained to support her. They would ensure meds are taken, support given, activities are appropriate etc. Seeing others behaving inappropriately may give mum a jolt which makes her appreciate how her own behaviour is affecting you. She'll always be your mum, and will know deep down how hard this is for you. You have to think of your needs to. X

 

[northumbrian_k]

Hi @Devonian from WS and welcome to our supportive and friendly community. Yours seems like an unusual situation and I think that you have raised the key point at issue. From what you have described, you have placed yourself in an invidious position and are indeed being 'used'. Your dedication is admirable but, as his vascular dementia worsens, your ability to look after your father in law hwill be tested to the limit. Neither you (nor your ex-husband) are responsible for providing care. Now may be the time to let social services know that there is a vulnerable person who needs their support. Decide on a plan to exit from the situation and put your needs first. The current situation is unsustainable.

 

[Gosling]

Hello @Devonian from WS and welcome to this forum from me too! From what you have said, you have , for very sound and admirable reasons, put yourself in a difficult position. Your ex husband, it does sound like to me, is using your good nature , but as @northumbriantian_k has said, as the dementia worsens, you will not be able to care for your father in law 24/7... or you will burn out. I agree to contact Social Services as soon as possible about the situation, they will probably do a needs assessment, but at least also you are in the system and flagged up as caring for a vulnerable person. You will not be able to carry on like this indefinitely.

 

[Devonian from WS]

Hi @Devonian from WS and welcome to our supportive and friendly community. Yours seems like an unusual situation and I think that you have raised the key point at issue. From what you have described, you have placed yourself in an invidious position and are indeed being 'used'. Your dedication is admirable but, as his vascular dementia worsens, your ability to look after your father in law hwill be tested to the limit. Neither you (nor your ex-husband) are responsible for providing care. Now may be the time to let social services know that there is a vulnerable person who needs their support. Decide on a plan to exit from the situation and put your needs first. The current situation is unsustainable.

Thank you for taking time to respond. I agree, the situation will worsen in time. My finlaw has said he'll top himself if he has to go in a home (I've moved his meds!), and we are in the system. I have registered as his carer, with gp and carers. I do feel angry that my ex and his brother are jollying off doing what they like, while I hold the can here. Typical they inherit most of his money too, with me, only recently, being apportioned a small sum. 🤷‍♀️