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Not sure what to do!! - Carers UK Forum

Not sure what to do!!

Tell us a bit about yourself here.
My dad died suddenly after we took him and my mum to Portugal to see my brother ( we came back on the Friday and he died on the Sunday aged 81) my mum has Parkinson's and has moved in with me and my husband and 21 yr old son , I've given up my job that I love !!
How long has mum been with you? Is she claiming disability benefits? Paying you for the care you provide, as well as a housekeeping contribution?
This is a very tricky situation. First of all, my condolences on the death of your father. I know that I can say things like 'How good it was that he saw his son' and that 'he went so swiftly, without a long painful and anxious illness' and so on, but that will be little consolation.....

You will all be 'in shock' I'm sure, and as you will have discovered, the practicalities of dealing with the aftermath of a death seem to go on for ever - paperwork and officialdom - which adds to the grief and sense often of sheer disbelief that it has happened.

However, why I say the situation you are in is tricky is this.

I think it's going to be essential to differentiate between your mother's emotional state, and her physical state. Like her, I'm widowed, and I know that for me having my family 'around' was like a life-belt in a drowning sea, and I relied on them enormously (teenage son, brother and family, MIL)(MIL now has advanced dementia and is 93 living in a care home). Having my family 'around' was a kind of bandage against the emptiness of my husband's place in my life.

BUT, at some point, I - like all who are widowed - had to reconcile myself that from now on I would be a 'singleton' again, and that was it. My husband wasn't coming back, that period of my life was over, and I had to learn to cope on my own. I could not 'cling' to my family. It wasn't fair on them, and it didn't 'move me on' (I didn't want to move on, but I knew I had to - like I say, I had to accept I was a singleton again.)

That, I'm afraid, is what your mother, emotionally at least, has to accept, though it won't be easy and it won't be quick.

But that has to be kept separate from her physical conditions. How bad is her Parkinson's, and how bad will it get? Those are the key questions.

Has she moved in with you because you are now taking the place of your father as her carer (I don't mean emotionally, I mean in practical things)? Or are her care needs not so great that she needs 'someone else' (and by that I mean it 'could' be 'anyone else', not necessarily family) to be with her/look after her 24x7? And will those care needs, whatever they currently are, increase over time, and if so, how rapidly? What will happen to her 'eventually' with Parkinson's? What is, sad to ask, but essential for your long term planning, her life expectancy?

I'm saying all this because it does sound as if (a) she's moved in with you as a kind of 'instinctive reaction' to her current situation (bereaved and incapacitated) and (b) you have given up something very important to you, ie, your job, and gained an extra member of your household.

May I say that I think you and your husband, and, to an extent your son (though he will, at some point, be leaving the nest permanently), sit down and really, really talk this through. What do YOU all want to happen now? GIven that you cannot get your father back, given that your mother has Parkinson's, what would you like the situation to be?

I'm going to be blunt, because this is what it boils down to. Do you want your mother living with you for the rest of her life? And if she does, do you want her living with you 'en famille' - ie, sharing your daily life, being there all day, every day, having meals with you, watching TV with you in the evening, etc etc. So that you and your husband/son have no privacy from her? (I'm not saying you don't enjoy her company, but do you want her 'with you' all the time?)

If you don't (and remember, this is about what you WANT, not what you think you 'ought' to do!) then one possibility you might consider is to create some kind of self-contained annexe for your mother, so that she is 'accessible' for whatever level of care she needs, and where you can go into her 'quarters' to be with her, say, during some of the day, and from which yes she can spend SOME evenigns with you and your husband/ son, but not living totally on top of you.

Would that be feasible do you think?

I'm afraid it's only natural that YOU may want your mum more than your husband wants her! (It would be the same the other way round maybe??!!). You might end up, now, feeling torn between the two of them? (Very common.)

Finally, for now, your job - you say you've given it up, but is that absolutely necessary? What level of care does your mum need physically? Could it not be done by professional care workers? She may not want this, but it would free you up to take up your job again?

Remember, in all of this, YOU are important too, and so is your husband and son. I know you must feel for your mum, but, as I say, sadly and resignedly, she is a widow now, and that is that. You cannot - and should not - 'replace' her husband.

There is no 'ideal answer' to your situation, but there could be a better one for you (eg, that gives you back some of your 'old life') and a not-too-bad one for your mum.

One final warning - I say this from my own experience! When my MIL first, three years ago, became incapable of living independently, I did what you have done, brought her to live with me (I could run her back - 400 miles! - for two week breaks for a while, then that became impossible too). The trouble was, for me, I was always intending to find her her own accommodation - I tried to rent a flat near me, thought of converting my garage to an annexe even, but in the end only a care home could cope.

BUT, of course, in the meantime, while I was sorting all this out - accepting it had to happen - she got very used to living with me. She loved it! I used to call it Hotel Jenny, as I spent each and every day devoted to her. Sharing each day, watching endless amounts of daytime TV, taking her to the supermarket (very, very slowly.....) and out for drives, afternoon tea, etc, making her supper, watching more TV, helping her to bed. Day after day after day after day after day....

My own life 'stopped'.

She loved it - I went insane with it!

BUT, when I DID find a care home and moved her in, the result was for her a feeling of 'eviction'. Because she only wanted to live with me then. My having 'taken her in' for what I thought was a temporary period actually made it MUCH more difficult for her to move out again.....I gave her a taste of the life she wanted, then took it away from her...

My 'kindness' turned out to be 'cruelty' in the end.

So do, please, be aware of that.....

Wishing you as well as can be in what, as I say, is a tricky situation - Jenny