1. Grizebelle

    Grizebelle New member

    Aug 18, 2019
    4
    Hi everyone,

    I am new here to DTP so please forgive my lack of forum etiquette here.

    My mother in law has A typical Alzheimer’s diagnosed around 3 and a half years ago. My father in law was here carer however he has sadly passed away unexpectedly which has meant that my family (3 children the youngest of which is a baby/toddler of only 20 months) have had to move in with mother in law in order to continue her care.

    With this all being unexpected we are trying our best to see a way forward whilst still looking after our children and also caring for mother in law which is a 24hr thing.

    Firstly: mother in law owns her own home outright (mortgage paid) and is a bungalow which is why we have moved in with her as it’s much safer a less disruptive than moving her in to our house which was up a steep hill and had lots of stairs. However this is still far from ideal as we now have 6 people living in a small 3 bed bungalow of which mother in law has the largest room with en suite (which we think she should keep) but it’s very cramped for us all. We have LPA and making a decision about how we manage things going forward is proving very difficult as it’s hard to know what will be best for everyone including my children. The only thing that is obvious is that we can’t care for mother in law and the children in the bungalow long term as it’s just too disruptive for mother in law to be listening to toddler tantrums and my older ones playing making noise usual kid stuff etc, the children are struggling also.

    The way I see it we have 2 options:

    Move house to somewhere bigger (we’ve seen one with an annex) which would give mother in law the quiet calm she needs and also the kids the space to play and make noise and just be kids. This would be ideal but have been advised that since the sale of bungalow would finance this house, the asset must be solely in mother in laws name (this is fine by us) however is a big move for all involved and particularly mother in law who has lived in the same place for over 35 years. She is stage 6 (I’m pretty sure) and I am aware this stage and stage 7 can last many years mother in law is 72 just turned and is still physically well and can beat me to the front door should the bell go.

    I am worried about how she would adjust to this new place and I am worried about putting a large chunk of her monetary asset into this house. We are also worrying what happens if in 6 months or 2 years after making this huge change/move she requires care beyond our capabilities, she/we would be required to sell the house to fund the care home fees. Whilst I’m aware that a care home would defer fees until the sale of house I’m concerned as to whether doing this would be best, as it is conceivably a lot of change and disruption for both the children and mother in law. Is it kinder to try and care for her in the manner by purchasing this house? Or is it kinder to just consider settling her into a care home where she would be able to stay and not have to move from?

    The second issue (I’m sorry I know this is getting long) is that we are self employed running our own business which we have found is impossible to run and keep profitable as so much time is spent on just caring for mother in law and keeping her safe. Mother in law is not in receipt of any benefit and just has her pension. I assumed there would be some kind of carer allowance that could be claimed to allow us some recompense for being unable to work/earn, but everything I’ve read says not as she doesn’t receive anything other than her pensions so no DLA or PIP. This would mean using her money to fund ourselves caring for her (but caring also for 3 children - not cheap!) I am not comfortable doing this (I don’t think it’s fair to mother in law) as it is not our money it’s mother in laws, but I’m not sure how we keep ourselves financially independent. If anyone has any experience of this or could offer some advice I would very much appreciate it.

    I just want to try and do what is best for everyone, especially mother in law.

    Thanks so much for reading this, apologies for the length.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,893
    N Ireland
    Hello @Grizebelle, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is a Factsheet about benefits and a Dementia Guide in the list so you may find them useful

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  3. myss

    myss Registered User

    Jan 14, 2018
    348
    Hello @Grizebelle Another welcome to the forum. I'm sorry to hear that your father-in-law has passed away and that your mother-in-law is on her own and requires more care.

    To be honest, I would try my best to stick to a solution where the MIL can stay in the property she has lived but I can see the issues this would create in regards to the kids. I doubt I can answer your dilemna as I'm unsure as to the rules on the sale of property if MIL's asset is used to fund it, so I hope someone who has similar experience of such a dilemna will be along soon. I just wanted to ask if you and your husband thought about staying over on odd nights instead of having to move in?

    There is a Carer's Allowance for carers but this is dependant on your MIL claiming certain benefits. One of them is the Attendance Allowance which she should be entitled to if she needs assistance and paying for care but is not means tested. Have a read of the links karaokePete has provided. All the best xx
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,894
    Yorkshire
    hello @Grizebelle
    a warm welcome to DTP
    my condolences on the death of your father in law
    sadly, when the spouse carer dies it can bring to light just how mych they were doing to keep things trundling along for the couple
    it's good that you have been able to help your mother in law through this change in her situation
    may I talk straight, though ... I am not sure your closing has it the right way round ... I appreciate that you want what is good for everyone (best to me is asking too much) which includes your mil, but you have a very young family who need you and are your priority, so you need to look to securing the future for them ... living with someone who has dementia is challenging and will take your time and energy
    personally, I would arrange an assessment of your mil's care needs by her Local Authority Adult Services, letting them know that her husband, her main carer, has died and you are only 'holding the fort' ... get in place as hefty a care package as possible, home care visits, day care, befriender visits, respite, aids in her home, to support her in staying in her home, but leaving you to carry on with your life and be able to work
    look into applying for attendance Allowance ... which must be in place before anyone can apply for Carer's Allowance ... and organise LPAs so you have the legal authority in place to help her manage her affairs
    you and your husband need to carefully weigh up how you proceed, knowing that your mil's condition will only deteriorate
    whatever action you take, keep posting, there's so much support and understanding here
     
  5. Grizebelle

    Grizebelle New member

    Aug 18, 2019
    4
    Hi @karaokePete

    Thank you for your reply, I have actually been on the site for a short while already reading through old posts and gaining a lot of useful information. I finally got around to signing up and making my own post today.

    We have social workers coming out on Tuesday and getting the ball rolling on assessments and hopefully some information and help in regards to benefits. It’s a tough situation and mother in laws behaviour has been quite bad these last few days (she’s been violent and aggressive which has been scary for me and my children) I will be organising a doctors appointment first thing tomorrow to get her checked out as I’m aware she could be suffering from a UTI as she’s not normally so ill behaved.

    Thanks again for the reply and I’ll definitely be sticking around!
     
  6. Grizebelle

    Grizebelle New member

    Aug 18, 2019
    4
    Hi @Shedrech thanks for responding

    Firstly I think your right regarding priorities and indeed my children do come top of that list. I just feel awful that poor mother in law has lost her husband and carer (though she never mentions him which surprises me) and my partner has lost his dad and feels he doesn’t want to lose his mum to a care home on top of that. You are also right that caring is very difficult, it’s not even been 3 months yet and I have to admit I do find myself struggling especially with some of the more challenging behaviour. In many ways it’s like I’ve been given an extra toddler to care for such is the level of supervision and attention that is required and this fully grown adult toddler can’t see or appreciate that what I’m doing is caring and only sees it as being prevented from (touching the hot oven or not falling down the step) doing things. I do not underestimate the impact this will have on my family and I but perhaps much more thought and consideration is needed, I think we had very much a knee jerk reaction to father in laws unexpected death and both felt like we owed it to him/mother in law to do our best and try and care for her. Maybe we just can’t however much we would like to, and I think perhaps we need to come to terms with that.
     
  7. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,759
    Salford
    The problem with carers allowance is that you can't get it if you earn over £123 per week (after deductons) and it's only £66.15 per week anyway so it's hardly a fortune but every little helps.
    K
     
  8. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    229
    Female
    Essex
    Hi @Grizebelle , welcome from me too. I am sorry to hear about your father in-law . I was in a similar situation to you , dad died unexpectedly four months ago, we moved Mum in with us that day. She has put up with a lot of upheaval and a complete change of everything she knew and routines etc but she has adapted amazingly well . I am in no way suggesting this is right in your situation . I have two teenagers, one with mental health issues and they are ok but it’s a massive adjustment for all of us and we are just seeming to settle but for you with young children it must be so difficult. I agree with the others in that if you can get a good care package and support in place then that would be ideal . That can take time though , I am still trying to get mum to a day centre. She too doesn’t talk about dad much, when she does she says he just walked off and left her. She was the one who found him so I guess it’s too painful and she has blocked that out. Best wishes and I hope you manage to find a solution that works for you all.
     
  9. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,062
    Female
    Chester
    As others have advised carers allowance is available if the pwd claims Attendance Allowance.

    When crisis happened with my mum my kids were 8 and 12. They are now 14 and 18. We had to move mum in with us in the short term ( shared with my brother) but clearly things wouldn't work in the long term. I found her sheltered extra care accommodation and it has been fantastic. She has deteriorated considerably and would have needed to move into a home by now if she had remained at home.

    There is no way I could have looked after my kids the way I have if mum had lived with us. My son is dyslexic and we have spent a lot of time with him before school finally supported him. My daughter was bullied and we moved her schools. Move probably delayed with mum's crisis. We couldn't have given the kids the focus they needed if mum had lived with us.

    In addition, mum with dementia no longer understood how things worked and treated the kids as if they were younger so continually told my son off for poor eating habits (probably linked to dyslexia/dyspraxia and fine motor control) every single meal time, she expected my daughter to do jigsaws with her as soon as she got in from school when she wanted to get her homework done, she bossed the kids around and was very sharp with them.

    I think living arrangements need to be in everyone's best interests and not just the pwd. Your MIL is the best she is going to ever be. She has a degenerative illness, and you need to think how you are going to look after her and your children as she progresses through the various stages. Dementia is like a bonfire, it will take all that you throw on it and then want more. Please pause and think about the whole family set up, and if you can do this for years, especially when you get to the stage MIL can't be left, how will you manage the school run, parents evenings, play dates etc. Conversely how will you manage hospital/GP appointments for MIL with 3 children in tow.

    You said your husband doesn't want to lose his mum to a care home, but many have posted on DTP about how good the care in a care home is, and instead of being the carer, they can visit, it isn't the end of the world, and is the best solution for many looking after a parent.
     
  10. Grizebelle

    Grizebelle New member

    Aug 18, 2019
    4
    Thank you for your reply, it’s very useful to see how others have dealt with situation especially with regards to children.

    Having had a much more frank and honest discussion with husband about how we were all coping with the situation plans have changed somewhat. The big house with the annex is now completely off the table, it was too much of a stretch financially, especially with not knowing how long Mother in Law would have been able to benefit from it. We have now put an offer in on a house where we can make provisions for her but where she will be totally separate from the children. This is a compromise and on the understanding with husband that she goes in to care as soon as we feel it’s required.

    I think she may well be moving into stage 7 now as despite treating her UTI she is no longer continent. Her appetite which was always very healthy has really decreased and she can really only handle very simple foods to eat, finger foods and is on a very toddler like diet. Very simple instructions and understanding is getting much harder and it’s increasingly difficult to settle or placate her for longer than a couple of minutes.

    It really is very consuming and I am anxious and eager to get the house move underway so that we can all have a much more pleasant living situation but especially for my children.
     

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