Don’t want to become a carer.

[Firecatcher]

My Mum was diagnosed with mild cognitive impairment 12 months ago but her score on the Addenbrooke’s Cognitive Examination has now dropped from 77 to 67 so I suspect a diagnosis of Alzheimer’s will be made soon. Her functioning has definitely deteriorated and my Dad is having to take on an increasing amount of household tasks. Although my Mum was given a lot of lifestyle advice when diagnosed with MCI she’s basically failed to follow most of it.

My relationship with my Mum has always been distant and strained. I’m an only child and had a difficult and at times physically and emotionally abusive childhood. Mum effectively sabotaged the career I wanted as an artist and I spent years working in jobs I hated. At a late stage in my life I now have a job I enjoy , a lovely husband and have began to enjoy success as an artist. My Mum has never acknowledged any of my art achievements and I suspect resents me doing thus at a time when she feels I should be devoting more time to her.

I live over a hundred miles away from my parents and can’t afford to give up work or move closer. I don’t want to be anymore involved with my mum than I already am. My Dad is already struggling and as he’s older is likely to die first leaving my Mum on her own.

I’m wondering whether I should start laying ground rules now as I’d imagine social services will be contacting either my Dad or me in the near future. I really don’t want Mum saying to them ‘’I’ve got my daughter’’ and them thinking she has family involved when this isn’t the case.

Have other people faced pressure from social services to provide more care than they can or want to do. From what I know navigating the care system is a minefield so I’d appreciate any advice.

I realise all of the above must sound incredibly selfish but whilst I’ll make sure my Mum gets the care she needs but I’m already feeling stressed about what might be coming my way.

 

[TNJJ]

My Mum was diagnosed with mild cognitive impairment 12 months ago but her score on the Addenbrooke’s Cognitive Examination has now dropped from 77 to 67 so I suspect a diagnosis of Alzheimer’s will be made soon. Her functioning has definitely deteriorated and my Dad is having to take on an increasing amount of household tasks. Although my Mum was given a lot of lifestyle advice when diagnosed with MCI she’s basically failed to follow most of it.

My relationship with my Mum has always been distant and strained. I’m an only child and had a difficult and at times physically and emotionally abusive childhood. Mum effectively sabotaged the career I wanted as an artist and I spent years working in jobs I hated. At a late stage in my life I now have a job I enjoy , a lovely husband and have began to enjoy success as an artist. My Mum has never acknowledged any of my art achievements and I suspect resents me doing thus at a time when she feels I should be devoting more time to her.

I live over a hundred miles away from my parents and can’t afford to give up work or move closer. I don’t want to be anymore involved with my mum than I already am. My Dad is already struggling and as he’s older is likely to die first leaving my Mum on her own.

I’m wondering whether I should start laying ground rules now as I’d imagine social services will be contacting either my Dad or me in the near future. I really don’t want Mum saying to them ‘’I’ve got my daughter’’ and them thinking she has family involved when this isn’t the case.

Have other people faced pressure from social services to provide more care than they can or want to do. From what I know navigating the care system is a minefield so I’d appreciate any advice.

I realise all of the above must sound incredibly selfish but whilst I’ll make sure my Mum gets the care she needs but I’m already feeling stressed about what might be coming my way.

Hi.I have always had a strained relationship with my dad. He was an “absent “father.Mentally and physically. Even though my mum and dad lived in the same house.

My dad has carers in 4X day. Dad is self funding. I used to be more involved with him but I found it was dragging me down so I let him get carers in more often.
Social Services have never demanded to me to look after my dad.If they did they would get a sharp reply.They have “duty of care” not me. I will only do what I can do. I’m an only child too. I have set ground rules for dad as he would like more help from me like I used to do.So,I would set ground rules and make it clear to all parties concerned what you are prepared to do..
Maybe write it down so it can be used as reference for your dad,especially..

 

[Hair Twiddler]

Hello Firecatcher,
First and foremost may I say I do not believe for one minute that you are selfish. I too was an only chld and was my mother's "one and only" in many senses of the phrase. Massive pressure, massive guilt. Mum lived with me and my family for several years and was dependant on me for years before that.
What you have (and I did not) is a bit of perspective and insight into your future....I am surmising that you are feeling overwhelmed by the enormity of what you perceive will be ahead. Don't be.
Make your plans and set your limits now. As you say navigating the UK care/social services system can be (and in many many other people's experiences) a minefield.

May I give you one piece of advice if you ever feel pressurised into agreeing/commiting /giving more of yourself than you honestly 100% can to a nurse/social worker...say nothing... stop
Do not say "yes"...do not think/articulate a reason why you can't agree with what they are suggesting. Do not get drawn in. You may be given lots of reassurances...take a look at others posts ... you will see this time and time again. The individual you are engaging with may well be sympathtic for sure, but the system behind them will issue no such guarantees.

Do write to your mother's doctor, state the facts of your mother's and father's health as you see it..tell them that you are employed full time and there is no anticipated change to this ...be honest but don't apologise. State facts but be brief.

Goodness, I've gone on a bit here.
All best wishes to you.

 

[Ponddweller]

Hi @Firecatcher i wholeheartedly agree with everything that’s been said. Sometimes on here when I read what people go through and what they give up to care for parents and partners that they have always loved and adored I have to remind myself not to beat myself up because I absolutely do not feel that way about my dad. He’s not ever really been interested in me or my life so he’s not going to take over now. When my mum died 5 years ago my sisters and I just muddled through assuming (because he always told us) that he wouldn’t last much longer and yet here we are and he’s even outlasted our eldest sister. I haven’t had any contact with social services yet if/when it happens I will try and stay alert! I recognise the sentiments above that authorities are sympathetic in person but am slowly realising that there isn’t anyone who will swoop in and tell you what to do. Although this forum is amazing and such a goldmine of information, it can be a bit overwhelming if you start falling down “what if” rabbit holes. I’m trying to get better at switching off. Please don’t forget that everyone has a unique story and just because one person has felt able to take something on, it doesn’t mean that you have to. Set your boundaries, but there are friends here.

 

[CardiffGirlInEssex]

I absolutely agree with all that's been said here so far. I too am an only child, living 200 miles away from my parents. Although I've always had a good relationship with them, I cannot be a carer for either of them and frankly I do not like the person my mother has become now that Alzheimer's us in charge of her. I have had Social Services ask if I can "step in more for a while" and I said no, very firmly. Lay out your ground rules now and stick to them, you do not have to explain your reasons to SS, just make it clear that they have the duty of care.

 

[Champers]

Absolutely concur with all the above posts.

Another only child married to another only child here too, and although there is the guilt monkey on your shoulder, there is no law which says you have to look after your parents. In the past, I’m ashamed to admit I’ve often been very judgemental about others who have stepped back or put their parents in care homes - no longer! Both our mothers were formidable characters who were ‘tricky’ and confrontational before dementia which has become exacerbated as the disease has progressed. There is no way we could have taken them on without becoming subsumed ourselves. You need to think about yourself because sadly, the overstretched authorities will gladly offload the responsibility to you if you show willing. Stand firm, make any necessary calls to make her GP and social services aware but I totally support your wish to limit your involvement. If you let it, dementia claims those around the sufferer too.

 

[Spamar]

Another only child. I got out, moved 260 miles away before the inevitable happened. I don’t know what the relatives thought, but I certainly never regretted it. I think my father had dementia from a very early age, and I wasn’t going to be the one dealing with it!

Having said that, I was pleased to be able to cope with my husband several years later!

 

[Tragicuglyducky]

I thinks it’s a shame so many of us have to justify what we perceive to be our “selfish” acts and thoughts. In the near future I’m sure I will post something and ask people to forgive my selfishness. Firecatcher, you need to remember that everybody has their limits, this is yours and that should just be accepted. There is nothing wrong with being “selfish”. I’m selfish too but I know I have to be selfish to be selfless. I know that when my mental health suffers everyone around me suffers yet if I am happy I have limitless time and energy to support those I love. If your mum doesn’t fall into the category of those you’d do anything for then you need to plan for that. Social services in our area have been very understanding with me but I have had to keep citing the fact that I have a baby as an excuse. They have done research for me, made enquiries etc. However Champers has said something key, the more cooperative you are with social services the more they will palm off onto you and you’ll find yourself on your own navigating these tricky waters. Because we are self-funded and cooperative my brother and I are the key contacts for everything, the carers etc call us at all times of the day for all sorts, and I always find myself asking in my head “what do you want from me now?!” I have no experience of this but I wonder if others have, I wonder what would happen if you were your most difficult version when dealing with social services and carers etc? When I spoke to SS recently they told me the only times they get involved is if the person had no money or had no relatives. I wonder if the same would apply for relatives that were not willing to get involved?

 

[TNJJ]

I thinks it’s a shame so many of us have to justify what we perceive to be our “selfish” acts and thoughts. In the near future I’m sure I will post something and ask people to forgive my selfishness. Firecatcher, you need to remember that everybody has their limits, this is yours and that should just be accepted. There is nothing wrong with being “selfish”. I’m selfish too but I know I have to be selfish to be selfless. I know that when my mental health suffers everyone around me suffers yet if I am happy I have limitless time and energy to support those I love. If your mum doesn’t fall into the category of those you’d do anything for then you need to plan for that. Social services in our area have been very understanding with me but I have had to keep citing the fact that I have a baby as an excuse. They have done research for me, made enquiries etc. However Champers has said something key, the more cooperative you are with social services the more they will palm off onto you and you’ll find yourself on your own navigating these tricky waters. Because we are self-funded and cooperative my brother and I are the key contacts for everything, the carers etc call us at all times of the day for all sorts, and I always find myself asking in my head “what do you want from me now?!” I have no experience of this but I wonder if others have, I wonder what would happen if you were your most difficult version when dealing with social services and carers etc? When I spoke to SS recently they told me the only times they get involved is if the person had no money or had no relatives. I wonder if the same would apply for relatives that were not willing to get involved?

It would be interesting wouldn’t it? I am an”only”and the contact for everything. But not so willing to do “everything “now. I have handed a lot to the carers to do(shopping,taking dad out ,medication)Basically told them to get on with it..

 

[anxious annie]

Hi Firecatcher
I'm not an only child, I have one sister who lives near mum who has Alzheimers, but I live a 3 hour journey away and found it a real strain having to visit every 4 weeks to give my sister a break from the shopping, washing etc as well as doing all the paperwork, Dr/hospital appointments etc. Mum had carers ( tho never really accepted their help), so we felt we were still doing more than we could cope with. Mum is in a home now so things are much easier for us and better for her.
Mum was self funding, but we did have SS in for a needs assessment initially.
If SS ask you to help you must say you can't as you are too far away and have others who depend on you , so carers will have to support. You can , I believe,refuse to be a contact for care agency or to be involved with the payments etc and make SS do this, but may not wish to as you then won't be able to monitor your mum's money.
You may want to get POA for your parents , if you haven't done so already.
If your mum won't accept help, sadly things may have to come to a crisis for SS to step up. I was never in this situation so its easy for me to say just refuse to do more than you feel able, but I know lots on TP who have had to do this.
Never feel guilty about wanting to live your own life, nobody knows what the future holds.

 

[Rosettastone57]

My Mum was diagnosed with mild cognitive impairment 12 months ago but her score on the Addenbrooke’s Cognitive Examination has now dropped from 77 to 67 so I suspect a diagnosis of Alzheimer’s will be made soon. Her functioning has definitely deteriorated and my Dad is having to take on an increasing amount of household tasks. Although my Mum was given a lot of lifestyle advice when diagnosed with MCI she’s basically failed to follow most of it.

My relationship with my Mum has always been distant and strained. I’m an only child and had a difficult and at times physically and emotionally abusive childhood. Mum effectively sabotaged the career I wanted as an artist and I spent years working in jobs I hated. At a late stage in my life I now have a job I enjoy , a lovely husband and have began to enjoy success as an artist. My Mum has never acknowledged any of my art achievements and I suspect resents me doing thus at a time when she feels I should be devoting more time to her.

I live over a hundred miles away from my parents and can’t afford to give up work or move closer. I don’t want to be anymore involved with my mum than I already am. My Dad is already struggling and as he’s older is likely to die first leaving my Mum on her own.

I’m wondering whether I should start laying ground rules now as I’d imagine social services will be contacting either my Dad or me in the near future. I really don’t want Mum saying to them ‘’I’ve got my daughter’’ and them thinking she has family involved when this isn’t the case.

Have other people faced pressure from social services to provide more care than they can or want to do. From what I know navigating the care system is a minefield so I’d appreciate any advice.

I realise all of the above must sound incredibly selfish but whilst I’ll make sure my Mum gets the care she needs but I’m already feeling stressed about what might be coming my way.

You are not alone with these types of feelings. My husband and his sister made a decision years ago, way before the dementia diagnosis, that they would never be full time carers for their mother under any circumstances. My mother-in-law was widowed young and had a personality disorder most of her adult life, which eventually developed into dementia . Both my husband and his sister were emotionally abused throughout their lives. Both myself and her son in law were on the receiving end of vile spite throughout our marriages. His sister moved abroad and had little contact with her mother, not even acknowledging the fact that she eventually went into care.

We had various strategies in place for many years to keep her at arm's length. She was self funding and when dementia was in the mix, I arranged carers privately until the carer situation became untenable and she went into full time care . You're right to lay down ground rules and know exactly what you are prepared to deal with. My mother-in-law had no involvement with social services as she was self funding . We arranged everything as we had power of attorney for finances. My impression is that if family are prepared to step up to do all the caring, then social services will just let that situation continue.

 

[Firecatcher]

A massive thank you to everyone who replied to my post and more importantly for being incredibly supportive and not judgemental or critical. It was hard for me to post as a I feared I’d face harsh condemnation and you reap what you sow kind of remarks. I know my Mum is only at the beginning of the dementia journey but if her deterioration continues at the current rate there’s probably only a year or so left whilst she’ll be relatively independent.

All the advice offered has been really helpful and confirmed my thoughts that social services and health care professionals will take a huge step back if families give the impression of being willing to care.

I’m relieved to find I don’t have to give reasons to social services and will certainly be assertive with them when the time comes as I cannot afford to stop working and even taking regular time off work would be difficult plus the additional costs incurred in travelling more frequently to visit. As husband and I don’t have children to look after us in old age it’s even more important that we look after our own health and finances

As I said previously I would never abandon my parents and want to make sure they receive the care they need without having to be the main person arranging it or first point of contact.

 

[Tragicuglyducky]

I aim to get the best possible care for my dad so I don’t have to visit him, if that makes sense? I will actually visit him but I want that peace of mind where I could forget about him and think, at least he’s comfy and safe. I find the more trouble he or the carers are having the more I get bothered, so ideally I want him to have the best possible care so no one bothers me one can dream eh?

 

[TNJJ]

I aim to get the best possible care for my dad so I don’t have to visit him, if that makes sense? I will actually visit him but I want that peace of mind where I could forget about him and think, at least he’s comfy and safe. I find the more trouble he or the carers are having the more I get bothered, so ideally I want him to have the best possible care so no one bothers me one can dream eh?

 

[RJCB]

Hi Firecatcher,
Thank you for your brave post. I understand. I had a distant relationship with my mother who was physically and emotionally abusive to me as a child. I never left my own children with her, out of fear of what would happen. She had a personality disorder and was sectioned in her early 70s after holding my father at knifepoint, overnight, on the stairs. She went into a locked Care Home and died 2.5 years ago. I could not look after her as a Carer, and I am an RN! It was just too painful. I have managed to support my Dad who has Lewy Body Dementia but we always had a close relationship and I feel he did his best to look after me when I was a child. In my job, we see many families struggling to care for elderly relatives with dementia. We never “ask” or “expect” them to take on the care...Social Services have a Duty of Care to vulnerable adults and our TherapyTeam liaise with SS. I have seen families struggling to cope yet turn away packages of Care or places in care homes. Look after yourself. Don’t give up what you have fought so hard for. The NHS and SS are responsible for your mother’s care. If you can, get Power of Attorney. This has been the most valuable of documents. I wish you well. You are important too x

 

[Mousehill]

There's no rule book with dementia, so don't let yourself feel judged by other people. I've been lucky in that mum and I have a very close relationship, but even so, I can honestly say there are times when memories of less happy times come flooding back when mum is in one of her irrational, dementia -driven moods and it's been so hard to bite my tongue.

Look after yourself because if you don't do that, you have no resource left to look after others. 'Looking after' (like others have said) doesn't necessarily mean being the primary carer: it means doing what is best for your family's specific circumstances and that starts with some honest, clear thinking.........which is exactly what you are doing, so for goodness' sake, don't beat yourself up because you are doing the right thing

 

[Sue62]

My partners aunt was diagnosed with alzheimers during Covid she is now 84. She has never been a caring or inclusive member of the family and has lost friends over the years due to her selfishness and ungiving attitude. We are involved in her care but find her very difficult to deal with sometimes as we think there has always been another underlying problem. She has never acknowledged the fact that she has Alzheimer’s and I think feels there is nothing wrong with her. She goes out and about with her bus pass and sometimes comes home after dark when the carers let us know she is not in for her call. We don’t want to be her carers but feel a sense of duty to be involved. I’m not sure we will want to continue when things get worse. There are other family members involved but we are the closest and sometimes I think it would be easier to move away and wash our hands of it all. so you are not selfish just honest about your feelings and not everyone has relations that are easy to care for.

 

[Feeling unsupported]

I too in effect am an 'only' (with a little moral support from the southern hemisphere), as is my OH. It is now 9 years since first my father, started needing (and demanding) more and more support. Then immediately following his passing, Mum's Alzheimer's became apparent. She has now deteriorated to the very later stages and she is bed bound and sleeps most of her days away in a nursing home. All this developed at a time in my life when my own children were becoming independent and I was finally fulfilling my own long held dreams of academia and a new career that followed. At the same time we are on the verge of semi-retirement and a desire to travel and enjoy life, before it might be too late. My parents travelled extensively in their later years, so why do I feel so constantly guilty, about enjoying myself? I have POA, which in itself can sometimes take up considerable time, managing mum's affairs, including clearing my parent's home and the sale of the property. There was a point in the early days of the pandemic, when I came close to a breakdown, trying to juggle mum's increasing needs, with a new challenge almost daily, whilst working full-time and trying to complete my own studies. I realised that for my own well-being, something had to give. Two of these three things, were long held dreams of mine and I made the decision, that regrettably, I would hand over the day to day care of mum, to those more able than myself. I visit her when I feel strong enough to do so, but even this is a challenge, I get so anxious beforehand and feel traumatised for days after. Other family and friends (who haven't visited for years), ask after her, but this makes me feel more guilt, when I have to admit that I haven't seen her recently. I feel that 9 years on, they still think I should be making the 50 mile round trip daily.

Unfortunately, there are few of us who do not struggle with this guilt monster. We shouldn't, this is our life and we only get one shot at it. My F-in-L actually told us recently that it is 'our duty' to care for him (that'll be in my spare time then???), but actually, the 'duty of care' does not lie with us and we should remember that. Those of you who do devote yourselves to the caring role, I salute you, but this is not for all of us. We must do as much or as little as we feel able. If that merely means that we ensure the necessary authorities are made aware, that help is required for our loved ones, then so be it.

 

[Violet Jane]

Re the family and friends, you don’t have to say when you last visited your mother. Just say something vague along the lines of ‘her dementia is very advanced now’ or ‘she’s slowly getting worse but is alright and is being well cared for’. Invite them to visit her themselves if they’re that interested.

Nine years of caring is a long time. My mother had a diagnosis of dementia for seven years and showed symptoms for a couple of years before that. My two siblings were abroad and so all the caring (in the broadest sense) fell to me (my brother did manage my mother’s finances and deal with the letting of her house though, for which I was grateful).

I am now in a similar situation in relation to an elderly friend. My husband has a PoA (financial) for her but I have fallen into the role of NoK as there is no close family. Fortunately, she has been fairly cooperative, and she now has a very good live-in carer which has made a huge difference. However, I’m aware that things could change at any point. Being a friend rather than a relative is easier in that SS can’t have the same expectations towards me. There are some things that we have been very firm on e.g. I will not provide personal care or do cleaning or gardening and my husband will not employ any carers; they must be employed by an agency even though this costs more. We don’t want the responsibility of employing someone and finding relief carers to cover breaks, holidays etc.