MIL with mixed dementia living with us causing strain

[Camilla1]

Hi, I'm new here. My 92 year old mother in law has been living with us for 2 years and was given a diagnosis of mixed dementia yesterday. I am not surprised by this as her memory and confusion has been deteriorating for a while, more so over the last year. She is very difficult to live with and takes all her frustrations out on me as I'm not her daughter. She adores my husband who is out at work every day. I have been working from home since the pandemic and I have a career in the NHS. I have a teenage daughter and we have 3 dogs. My mother in law moans about me to her other children about how bored she is. I work full time so I can't entertain her all day. I have been accused of stealing from her, she gets annoyed at me, tells my husband that I have been calling her names (which I would never do). I'm a health professional and I know it's her condition but that doesn't make it any easier to live with. She is warm, well fed, has her medications and has the stimulation of living in a busy house. When she lived on her own nearer her daughter she lost 2 stone in weight as she wasnt feeding herself properly or taking her medications, her house was dirty, she was incontinent and she would go days without seeing anyone. We lived quite a few miles away so in the end we decided to move her in as she would have ended up dead. However with the amount of strain this is causing and I would never say this to my husband but I wish we had never taken her in. I have a very stressful job, I'm doing an MSc in my 'spare time' and I'm running a house and bringing up my 13 year old daughter. I feel like I have taken into my home a miserable grumpy woman who doesn't appreciate anything that is done for her. Her other children barely call her but they are all wonderful of course! I sorted out her incontinence issues, arranged for carers to come in each morning to help her shower as she was refusing to get washed. I organised getting her referred to a memory clinic which is where she got her diagnosis from. When she came to live with us she had thrush all under her breasts which I treated for her. I want my house back, I want my husband back who feels he has to sit with her every evening as he has been in work all day and he feels bad that she has been sat in her sitting room alone. I don't want to hear the TV blasting all day. I don't want to have to get back by 4pm if we go out for a couple of hours to be able to make her dinner for her. I'm fed up. If you have read this far I am grateful for you reading my thoughts.

 

[Bunpoots]

Welcome to Dementia Talking Point @Camilla1

Wow! You have a lot to put up with. I’m not surprised you feel as you do. I understand you wishing you’d never taken on the role of carer.

If I were in your shoes I’d be looking at finding alternative accommodation for my MIL! I appreciate this isn’t easy to do though. In the meantime perhaps you could look at daycare now that things are opening up a bit more - with a view to getting your MIL into full time care in the near future.

I think it’s time for a full and frank discussion with your husband before your MIL’s illness ruins all your lives..

 

[Grannie G]

Hello @Camilla1 Welcome to Dementia Talking Point.

We agree to taking a close family member in with the best will in the world often to find it is certainly not as uncomplicated as it sounds.

You have a full and active life and too much is being asked of you if you are working full time, whether at home or in a place of work, and are expected to be a day time carer at the same time.

I had my grandmother living with us. We both loved her dearly but even so and without dementia in the mix, it didn`t work out. Fortunately for us my grandmother did not have dementia and she willingly went to live in an assisted living place.

If you can, it might help if you have a very open discussion with your husband. I understand he may feel duty bound if he feels his mother might not have much time left, but if her living with you is affecting the quality of your family life so much it could cause more harm than it is worth.

 

[marionq]

Totally understand. Even with SIL now in care I feel sucked under at times. No one else can act as a contact and there is no POA so I am asked to deal with the affairs of someone who only ever saw me as a resource. Try as I may to back off there is no escape. If she was in the same house as me I would have had a stroke by now.
An honest discussion with your husband and his siblings is essential.

 

[Sarasa]

Hi @Camilla1 and welcome to Dementia Talking Point. You'll find lots of support and advice here.
I agree that you should have a frank conversation with your husband about how you feel. It sounds as though things can't go on for much longer as they are without serious impact on your relationship. I'd also be concerned about your daughter. My husband's grandmother lived with them when he was a teenager and he found it extremely difficult. When my mother started to need more care he made it very clear he didn't want her moving in with us and he said they same to my brother (who had a very young child at the time). For a start maybe ask one of the other siblings to take their mother for a 'holiday'. That not only will enable them to see the challenges she is presenting but give your family a bit of a breathing space.
I'd also start researching care homes. This site https://www.carehome.co.uk/ is a useful resource. Moving someone to care doesn't mean you stop caring, just that you are doing it in a different way.

 

[Camilla1]

Thank you so much Grannie and Marion for taking the time to reply. I have discussed with my husband that if it gets to the point where we can't get out the house for a few hours together to go walking with the dogs then I am going to draw a line and she would have to go into residential care. He said he understood but I think the reality is he would feel immense guilt and he would find this hard to do. I also know I will be vilified by the family who are on the whole useless. They are complaining to us saying 'mum is bored and she feels like she is in a prison'and I say feel free to call her in the day while we work which they rarely do. I love her but I don't have that great love that you do for your own parent or spouse which makes challenging behaviour even more difficult.

 

[Izzy]

Welcome to the forum @Camilla1.

Your situation sounds incredibly difficult. If you feel you don’t want to go down the care home route yet In was wondering if your MIL has any carers? Perhaps any care currently in place could extend to becoming a befriending situation so that your MIL has company and distraction that doesn’t involve you.

 

[Camilla1]

Thank you so much Grannie and Marion for taking the time to reply. I have discussed with my husband that if it gets to the point where we can't get out the house for a few hours together to go walking with the dogs then I am going to draw a line and she would have to go into residential care. He said he understood but I think the reality is he would feel immense guilt and he would find this hard to do. I also know I will be vilified by the family who are on the whole useless. They are complaining to us saying 'mum is bored and she feels like she is in a prison'and I say feel free to call her in the day while we work which they rarely do. I love her but I don't have that great love that you do for your own parent or spouse which makes challenging behaviour even more difficult.

Welcome to Dementia Talking Point @Camilla1

Wow! You have a lot to put up with. I’m not surprised you feel as you do. I understand you wishing you’d never taken on the role of carer.

If I were in your shoes I’d be looking at finding alternative accommodation for my MIL! I appreciate this isn’t easy to do though. In the meantime perhaps you could look at daycare now that things are opening up a bit more - with a view to getting your MIL into full time care in the near future.

I think it’s time for a full and frank discussion with your husband before your MIL’s illness ruins all your lives..

Thank you, yes I agree I would love her to go into a residential home where she would get more stimulation in the day with us both working. However I suspect that until she is at a point were she doesn't know who we are he would not be happy with that happening. I try and get out as much as I can in the evenings walking the dogs and at weekends so I can escape. I love my house but it isn't my sanctuary anymore..

 

[Camilla1]

Welcome to the forum @Camilla1.

Your situation sounds incredibly difficult. If you feel you don’t want to go down the care home route yet In was wondering if your MIL has any carers? Perhaps any care currently in place could extend to becoming a befriending situation so that your MIL has company and distraction that doesn’t involve you.

Thank you yes she has one carer coming in for 30 mins to get her showered each morning. Social services set it up and said they don't offer entertainment just basic cares. We are just in the process of sorting out the financial assessment and I suspect as she has lots of savings she will have to start contributing maybe we can then up the care package. I would like her to move into a home. I feel for my husband who is a teacher and he is coming home to a fed up wife and a moaning mum who is complaining and making things up. It is a difficult situation all round.

 

[Izzy]

Ah I see @Camilla1. I understand. Hopefully you will be able to get something sorted out sooner rather than later. As a former headteacher who had both mum and husband at home with dementia I can understand how your husband must feel!

 

[Camilla1]

Welcome to the forum @Camilla1.

Your situation sounds incredibly difficult. If you feel you don’t want to go down the care home route yet In was wondering if your MIL has any carers? Perhaps any care currently in place could extend to becoming a befriending situation so that your MIL has company

Ah I see @Camilla1. I understand. Hopefully you will be able to get something sorted out sooner rather than later. As a former headteacher who had both mum and husband at home with dementia I can understand how your husband must feel!

Goodness that must have been incredibly tough how on earth did you cope?! I have patients with terminal cancer that I speak to whose lives will be cut short. I come downstairs to this grumpy moaning ungrateful 92 year old and I think you don't realise how lucky you are to have lived a long life. MIL is clean, well fed, taken out for drives and for lunch. Hairdressers and chiropodist coming into the house. I don't want her to grovel at my feet but just a glimmer of being grateful would be nice!

 

[Izzy]

@Camilla1 - I was lucky enough to have an excellent care package. Without thatI couldn’t have done it. It does sound as if you are at the end of your tether and thinking about residential care sounds like the right way forward for you.

 

[Jaded'n'faded]

Now that things are opening up again, would it be possible to get your MIL to a Day Centre a couple of days a week? Make enquiries with social services or your local dementia navigator if you have one.

It's a bit rich for the siblings to complain to you that MIL says she is bored! It's really not up to you to keep her entertained (and you have your job!) and I think you're right to suggest that they do more. (But they probably won't.)

Unfortunately your MIL is only going to get worse so you need to start making plans...

 

[Camilla1]

Now that things are opening up again, would it be possible to get your MIL to a Day Centre a couple of days a week? Make enquiries with social services or your local dementia navigator if you have one.

It's a bit rich for the siblings to complain to you that MIL says she is bored! It's really not up to you to keep her entertained (and you have your job!) and I think you're right to suggest that they do more. (But they probably won't.)

Unfortunately your MIL is only going to get worse so you need to start making plans...

Yes I was hoping for a day centre to become available that would be ideal however we have mentioned them before and she pulled a face and said she wouldn't go. She also didn't want carers washing her but has accepted them now. If one opens up I may encourage her to give it a try and see if she enjoys it. Thank you

 

[MartinWL]

Everyone, or almost everyone, feels guilty about putting a loved-one in a care home but I am sure you also love your child, and her needs have to be a priority. You already qualify as a saint so if you cannot put up with this any longer, I would endorse what others have said about day care and care homes.

 

[lollyc]

Yes I was hoping for a day centre to become available that would be ideal however we have mentioned them before and she pulled a face and said she wouldn't go. She also didn't want carers washing her but has accepted them now. If one opens up I may encourage her to give it a try and see if she enjoys it. Thank you

The default setting for dementia seems to be "no"- so asking if she wants go to anything will always be met with resistance. I did a deal with Mum - you have to try it before you say no. Didn't always work, but often did. I think it's fear of the unknown.
I spent a very long time tracking down various clubs that my Mum could attend, so that I could get a break, but it was hard work, with no help from dementia charities / social services.
Clearly Covid will have an impact, but try searching your local council website for OAP services. It doesn't always have to be dementia specific, if MIL can toilet herself and doesn't represent a wandering risk.
Age UK offer Personal Assistants in some areas, who will sit with the person, or act as a companion on a walk or shopping trip. Some churches and community groups run very good clubs. It's probably out there, but no-one is going to help you find it.
Eventually Mum went to 4 groups every week, plus a couple of other things on a monthly basis (which I had to accompany her to.) All stopped due to Covid, and she actually misses them!

 

[Rosettastone57]

Thank you so much Grannie and Marion for taking the time to reply. I have discussed with my husband that if it gets to the point where we can't get out the house for a few hours together to go walking with the dogs then I am going to draw a line and she would have to go into residential care. He said he understood but I think the reality is he would feel immense guilt and he would find this hard to do. I also know I will be vilified by the family who are on the whole useless. They are complaining to us saying 'mum is bored and she feels like she is in a prison'and I say feel free to call her in the day while we work which they rarely do. I love her but I don't have that great love that you do for your own parent or spouse which makes challenging behaviour even more difficult.

Thank you, yes I agree I would love her to go into a residential home where she would get more stimulation in the day with us both working. However I suspect that until she is at a point were she doesn't know who we are he would not be happy with that happening. I try and get out as much as I can in the evenings walking the dogs and at weekends so I can escape. I love my house but it isn't my sanctuary anymore..

Hi @Camilla1 ,unfortunately you may be waiting a long time before your mother in law doesn't recognise you. My mother in law eventually went into care, but she still recognised my husband, right upto her passing away. She went into care due to her high falls risk, double incontinence amongst other things. You need to be sure what your lines in the sand are, your limits as to what you're prepared to deal with, whether it's aggression, incontinence etc . There will come a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. When that happens, you need a plan. As others have said, a frank discussion is the way forward. Your mother in law will always say no to anything, if you wait for a person with dementia to agree with you or see your point of view you will wait forever .

 

[Camilla1]

Thank you all I truly appreciate people taking the time to respond. I can't tell you how refreshing it feels to be heard. I have started looking at care homes. I want the last 5 years before my daughter goes to uni to be enjoyable. Thank you too for your insight and knowledge. I am going to be going back to seeing my patients in person and working in the office a couple of days a week..I suspect that may result in things becoming unmanageable here and that may force our hand to have to organise residential care. The line in the sand may appear. I am going to admit that some mornings when she has a big lie in I can't help but hope she has passed away peacefully in her sleep and then feel disappointed when she hasn't. I know that sounds awful but it is how I feel.

 

[Rosettastone57]

Thank you all I truly appreciate people taking the time to respond. I can't tell you how refreshing it feels to be heard. I have started looking at care homes. I want the last 5 years before my daughter goes to uni to be enjoyable. Thank you too for your insight and knowledge. I am going to be going back to seeing my patients in person and working in the office a couple of days a week..I suspect that may result in things becoming unmanageable here and that may force our hand to have to organise residential care. The line in the sand may appear. I am going to admit that some mornings when she has a big lie in I can't help but hope she has passed away peacefully in her sleep and then feel disappointed when she hasn't. I know that sounds awful but it is how I feel.

My husband and his sister felt like that about their mother. She emotionally abused them as children and they cared for her out of a sense of duty. Not everyone is cut out for the carer role.

 

[AwayWithTheFairies]

I would be doing the hard NOs with my family if this happened to me. That said, and in the meantime, I think gaining more understanding if you can about why she is like this will only help. Try the compassionate communication resources on here or courses if you can fit it in to read, or more to the point your OH! For example, I have been irritated up to now with my mum stepping on my heels when we go shopping, but now I have studied it more i realize that this is just another aspect of the disease, not something she is doing deliberately and it is somehow less annoying