Struggling with caring for mum and young family

[LucertNL]

Hi everyone, this is the first time I’ve ever posted in a forum. I guess I always feel other people have it harder than me. But I am struggling to cope emotionally now.
Basically my mum is 81 and my father died in Nov 2016. Mum didn’t cope at all with his passing, I dealt with everything financial, medical, everything - she became quite vague and forgetful and I put it down to grief. It was very hard though as the only person she accepted help from was me.
Fast forward to September 2018 and she fell and broke her shoulder in Italy on a short break (scuse the pun!) with my older brother. She had surgery over there and reacted very badly to the operation and whole experience- I had to fly over as I speak Italian and I thought I just needed to help with her flying home - when in fact she suffered from post operative delirium very seriously and I ended up staying nearly 2 weeks with no sleep, she was given anti psychotic drugs etc as she lost the plot. I knew her treatment was wrong and was battling it all the way. But basically with the break she had drastic nerve damage and lost the use of her arm and hand (which is gradually coming back, now a year down the line)
Plus serious delirium.
She ended up in hospital on her return to the UK then a respite home for a month before her own home with carers 3 times a day.
Around Easter time after hundreds of other physical medical appointments the GP finally said we needed to look at mum’s memory and told me what I had already guessed that she has vascular dementia and possibly Alzheimer’s. Due at the memory clinic on 11th Sept for more investigation and info- as far as mum is concerned in her mind she’s fine.
So.........I find myself with 3 kids, ages 10,8 and 3, I am self employed, with a husband who is self employed and my mum who lives 10 minutes away. I have to take her to her many physio and hospital appointments as she can’t remember so much I need to reply for her, she doesn’t realise the financial strain that is on me.
She wants to be involved in everything with me and my family even though she physically can’t keep up, she is unpleasant to her carers and people who offer to help her - she seems to only want help from me, but still with all that I do it is still never enough.
I see that she is lonely, depressed and not herself - as we are early days with her diagnosis I assume I will discover a bit more about dementia and her character changes, but I am at my limit after nearly 3 years one way or another - I feel trapped.
I have 2 brothers but they don’t live nearby, one is abroad.
I feel like my family are suffering as a result as well. I’m not always my nicest self with them. They often have to endure visits to grandma’s - and actually all she does is fall asleep.
So many people tell me I need to live my life and enjoy my children but I find it difficult to step back. Mum recognises everyone and ‘presents’ very well as they say, so on the surface doesn’t have a problem - but she has shut herself off from everyone apart from me. And I am cracking under the pressure of it.
I now find I am lying to my mum about what i’m doing this weekend because I don’t want to involve her - I am only 41, I should be able to spend time with my own family andnot feel guilty shouldn’t I?? I saw her for 3 hours today......
and her dog and her dog walker/carer have just had a run in that i’ve Been dragged into! It’s the final straw!
I hope I don’t sound selfish - I do love my mum but am finding it all too much at the moment.
And I am also very aware that things will only get worse.......,
Soooooooo sorry for the ridiculously long post! Seems I needed to off load!!
Anyone got any pearls of wisdom or just a virtual hug to offer me?

 

[marionq]

That is a big load you are carrying. The mix of young children and an elderly person with dementia is a bit of a nightmare. Would she go to daycare a couple of times a week? It would entertain her and wear her out.

It’s really important that your husband and children come first while keeping your Mum safe. Meeting her every whim as well as her basic needs won’t be possible.

You may well have to start looking at suitable care homes for the inevitable time when it is too much.

 

[LucertNL]

That is a big load you are carrying. The mix of young children and an elderly person with dementia is a bit of a nightmare. Would she go to daycare a couple of times a week? It would entertain her and wear her out.

It’s really important that your husband and children come first while keeping your Mum safe. Meeting her every whim as well as her basic needs won’t be possible.

You may well have to start looking at suitable care homes for the inevitable time when it is too much.

Thanks for your reply - she goes to an excercise class once a week aimed at the elderly that is brilliant and I have got the village volunteer organisation involved in taking her to that where possible which is amazing.
But whenever I suggest other things she is still of the opinion that it is for ‘old’ people, and is very negative towards the possibilities in the village. I was saying to my husband today that she seems to expect/want all experiences to be earth shattering rather than just a pleasant way to pass time, so doesn’t make an effort with the many older people who she knows in her village. She seems to expect me to live her life for her and is very put out when I don’t.

I am hoping that the memory clinic appointment might help slightly - and open up conversations regarding the future and as you say the inevitable decision regarding care homes.

 

[Bikerbeth]

I have no advice but please find a big virtual hug

 

[Jenni_B]

Very sorry to hear this - the pressure sounds horrendous, and you should definitely not feel guilty about wanting to keep your life with your husband and children. Easier said than done, but your mum mustn't take you down with her. Other people here will be able to offer more practical advice than I can (I'm just the sister of a carer), but I'm sending you a huge hug.

 

[MTM]

Oh my that sounds really tough. Both my parents had dementia, my father died three months ago today, and my mother isn’t as bad as Dad was. My son is eleven now. The only advice I can give is this:

Look after yourself. This is a marathon. I’ve been doing a 280 mile trip round the M25 every Wednesday to have lunch with my parents for three years and I’ve been worrying about my Dad’s mental health for fourteen years. The in laws the other side are a bit fitter but also quite needy. They’re even further away. Back when Dad’s Alzheimer’s began show, and I realised I couldn’t give my parents the support they needed, I confess I nearly went under. My lad was a toddler at the time, my in laws were living with us temporarily and I ended up getting shingles. That torn feeling is all to familiar to many of us.

If you need to, it might be worth getting counselling for yourself. I went to my doctor for help and she referred me for cognitive behavioural therapy and I found it an enormous help. Also I’ve found it helped me to be totally up front with my son and husband. They totally understood when I explained that, there were certain things I had to do to help my parents in order to be able to look myself in the eye in the mirror each morning and like myself as a human being. They’ll understand that you have to help your mum. It’s amazing how much of it kids will get and also how lovely and supportive they can be sometimes, even though they’re only little.

From what you say, it sounds as if your Mum is clinging on to her identity and doesn’t identify as an elderly person. I wish I could offer you some useful advice there. You have to set boundaries I guess but I know how hard that is.

Maybe it’s worth trying to explain to her that if you sink, everyone sinks and that you need to look after yourself sometimes too? It’s so difficult, have a virtual hug.

Take care and I hope things settle.

 

[Grannie G]

Hello @LucertNL

When I was caring for my mother I was in full time employment and unable to drop everything and attend to her.
The same applies even if you are self employed. Even if you have more leeway, work has to be done.

Perhaps if your mother was encouraged to accept you cannot be at her beck and call, she would be more amenable to outside care.

I feel like my family are suffering as a result as well. I’m not always my nicest self with them.

It is not only your mother who is affected by her illness ,it sounds as if it`s taking its toll on the whole family.

You are not duty bound to be all things to all people. Your young family takes priority however sorry you feel for your mother.

I know from my objective perspective it sounds easily done . Try to think what you would say to anyone else posting here in your situation.

 

[DesperateofDevon]

Hi everyone, this is the first time I’ve ever posted in a forum. I guess I always feel other people have it harder than me. But I am struggling to cope emotionally now.
Basically my mum is 81 and my father died in Nov 2016. Mum didn’t cope at all with his passing, I dealt with everything financial, medical, everything - she became quite vague and forgetful and I put it down to grief. It was very hard though as the only person she accepted help from was me.
Fast forward to September 2018 and she fell and broke her shoulder in Italy on a short break (scuse the pun!) with my older brother. She had surgery over there and reacted very badly to the operation and whole experience- I had to fly over as I speak Italian and I thought I just needed to help with her flying home - when in fact she suffered from post operative delirium very seriously and I ended up staying nearly 2 weeks with no sleep, she was given anti psychotic drugs etc as she lost the plot. I knew her treatment was wrong and was battling it all the way. But basically with the break she had drastic nerve damage and lost the use of her arm and hand (which is gradually coming back, now a year down the line)
Plus serious delirium.
She ended up in hospital on her return to the UK then a respite home for a month before her own home with carers 3 times a day.
Around Easter time after hundreds of other physical medical appointments the GP finally said we needed to look at mum’s memory and told me what I had already guessed that she has vascular dementia and possibly Alzheimer’s. Due at the memory clinic on 11th Sept for more investigation and info- as far as mum is concerned in her mind she’s fine.
So.........I find myself with 3 kids, ages 10,8 and 3, I am self employed, with a husband who is self employed and my mum who lives 10 minutes away. I have to take her to her many physio and hospital appointments as she can’t remember so much I need to reply for her, she doesn’t realise the financial strain that is on me.
She wants to be involved in everything with me and my family even though she physically can’t keep up, she is unpleasant to her carers and people who offer to help her - she seems to only want help from me, but still with all that I do it is still never enough.
I see that she is lonely, depressed and not herself - as we are early days with her diagnosis I assume I will discover a bit more about dementia and her character changes, but I am at my limit after nearly 3 years one way or another - I feel trapped.
I have 2 brothers but they don’t live nearby, one is abroad.
I feel like my family are suffering as a result as well. I’m not always my nicest self with them. They often have to endure visits to grandma’s - and actually all she does is fall asleep.
So many people tell me I need to live my life and enjoy my children but I find it difficult to step back. Mum recognises everyone and ‘presents’ very well as they say, so on the surface doesn’t have a problem - but she has shut herself off from everyone apart from me. And I am cracking under the pressure of it.
I now find I am lying to my mum about what i’m doing this weekend because I don’t want to involve her - I am only 41, I should be able to spend time with my own family andnot feel guilty shouldn’t I?? I saw her for 3 hours today......
and her dog and her dog walker/carer have just had a run in that i’ve Been dragged into! It’s the final straw!
I hope I don’t sound selfish - I do love my mum but am finding it all too much at the moment.
And I am also very aware that things will only get worse.......,
Soooooooo sorry for the ridiculously long post! Seems I needed to off load!!
Anyone got any pearls of wisdom or just a virtual hug to offer me?

((((((((Hugs))))))))
Vent away lovely!
My mums sounds similar to yours. Let’s hope it’s a generational thing & we don’t do this to our children!
Yes I do understand as I traveled to visit Granny & Grandad with two children who now they are adults don’t want to visit them unless I ask for company.
It’s not what I’d do again if I could turn the clock back.
Don’t feel guilty about your Mum, putting it quite coldly my now adult daughter said - Granny has had her life, you need to live yours. Um ... I found that heartbreaking as my daughter loves her Granny but accepts that she makes bad choices & has to live with the consequences of them; as does my husband & son.
My adult son repetitively told me, I hate what Granny does to you. You need to live your life & let Granny get on with it; he moved to Australia a year ago- I have yet to visit him & miss him dreadfully.
I to am self employed & find my days curtailed by sorting out the mess mum makes with her poor choices & trying to resolve those consequences. It’s an awful strain on family life & my relationships with them.
With hindsight I’d do it all differently, I’d prioritise my children, OH, work & have an acceptable percentage for Mum. Acceptable in the eyes of my husband & children - not my mother!
Know whatever you do it will never be enough for your Mum. This is part of her disease & in my Mums case part of her nature.
You can love someone but not like how they make you feel; it’s allowed.... people don’t say that enough.
Your priority is your children, if your Mum asks so much of you now what will it be like when they are more independent?
My Mum finally said what I’ve always known on my last visit- “ are you telling me you can’t look after me”
My answer was yes. I will do all I can to assist you to live independently but I can’t continue like this.
Oh the emotional blackmail of I will have to go into a home came out again, but I was determined not to react &calmly asked if that’s what she wanted.
No - of course it isn’t
You now have a large geriatric toddler with a bank account & house to run; sadly you need to deal with this situation just as you did with your children when they were toddlers!
Emotionally difficult but you are almost there, you posted on a forum - big step forward ( one I’ve just made myself recently!)
(((Hugs)))

 

[Delphie]

I too was a self employed mum when trying to support my mum living 'independently'. It nearly broke me. My business almost went under, my health suffered, my marriage was impacted and I know I short changed my boys on many occasions when I should have been there for them. It probably took me around two years after my mum went into care to get back to some kind of normality.

If I could wind the clock back and do it all again I'd set firmer boundaries. The guilt would be massive I'm sure but then most of us have the guilt monster as a faithful companion whatever we do, so I'd try to be pragmatic about it.

So the boundaries I'd set would be along the lines of only visiting an x number of times per week/month or devoting a certain amount of time to dealing with mum, say four hours a week. Or a combination of the two. Visit once a week and have a couple of hours earmarked for dealing with the SS, the bank, food shopping online etc. And I'd tell everyone too, the family so they would know and keep me to it, and everyone else so they wouldn't expect more from me. Only the house burning down emergencies would get a pass.

My weakest link was my self employment. Because I could be flexible people, me included to begin with, assumed that I could come and go as I pleased and that my time was my own. Mum's social worker, for example, was lovely but did put pressure on me to do more and more as mum declined. Could I come and take her out a bit more often? Take her to my house for weekends so she wouldn't be lonely? Help her with her house a bit more, seeing as she wouldn't let a cleaner or the carers in? Yes, sure, I'll do all that which with travelling equates to a full time job, then I'll do my own full time job, then I'll take care of my kids and my marriage... Ooops, no time to fit it all in unless I give up sleeping completely. Something's got to give.

Whether you take my advice or not I wish you the best of luck for this bit. In very many ways it gets easier further down the road. My mum's in residential care and has been for years. Visiting presents its own challenges but overall I've a handle on things in a way that I certainly didn't have before and simply having more time makes a massive difference.

All the best.

Dee xxx

 

[TNJJ]

Hi everyone, this is the first time I’ve ever posted in a forum. I guess I always feel other people have it harder than me. But I am struggling to cope emotionally now.
Basically my mum is 81 and my father died in Nov 2016. Mum didn’t cope at all with his passing, I dealt with everything financial, medical, everything - she became quite vague and forgetful and I put it down to grief. It was very hard though as the only person she accepted help from was me.
Fast forward to September 2018 and she fell and broke her shoulder in Italy on a short break (scuse the pun!) with my older brother. She had surgery over there and reacted very badly to the operation and whole experience- I had to fly over as I speak Italian and I thought I just needed to help with her flying home - when in fact she suffered from post operative delirium very seriously and I ended up staying nearly 2 weeks with no sleep, she was given anti psychotic drugs etc as she lost the plot. I knew her treatment was wrong and was battling it all the way. But basically with the break she had drastic nerve damage and lost the use of her arm and hand (which is gradually coming back, now a year down the line)
Plus serious delirium.
She ended up in hospital on her return to the UK then a respite home for a month before her own home with carers 3 times a day.
Around Easter time after hundreds of other physical medical appointments the GP finally said we needed to look at mum’s memory and told me what I had already guessed that she has vascular dementia and possibly Alzheimer’s. Due at the memory clinic on 11th Sept for more investigation and info- as far as mum is concerned in her mind she’s fine.
So.........I find myself with 3 kids, ages 10,8 and 3, I am self employed, with a husband who is self employed and my mum who lives 10 minutes away. I have to take her to her many physio and hospital appointments as she can’t remember so much I need to reply for her, she doesn’t realise the financial strain that is on me.
She wants to be involved in everything with me and my family even though she physically can’t keep up, she is unpleasant to her carers and people who offer to help her - she seems to only want help from me, but still with all that I do it is still never enough.
I see that she is lonely, depressed and not herself - as we are early days with her diagnosis I assume I will discover a bit more about dementia and her character changes, but I am at my limit after nearly 3 years one way or another - I feel trapped.
I have 2 brothers but they don’t live nearby, one is abroad.
I feel like my family are suffering as a result as well. I’m not always my nicest self with them. They often have to endure visits to grandma’s - and actually all she does is fall asleep.
So many people tell me I need to live my life and enjoy my children but I find it difficult to step back. Mum recognises everyone and ‘presents’ very well as they say, so on the surface doesn’t have a problem - but she has shut herself off from everyone apart from me. And I am cracking under the pressure of it.
I now find I am lying to my mum about what i’m doing this weekend because I don’t want to involve her - I am only 41, I should be able to spend time with my own family andnot feel guilty shouldn’t I?? I saw her for 3 hours today......
and her dog and her dog walker/carer have just had a run in that i’ve Been dragged into! It’s the final straw!
I hope I don’t sound selfish - I do love my mum but am finding it all too much at the moment.
And I am also very aware that things will only get worse.......,
Soooooooo sorry for the ridiculously long post! Seems I needed to off load!!
Anyone got any pearls of wisdom or just a virtual hug to offer me?

Hi. I do not have a young family any more so I cannot help you from that perspective.But I do have a sick mother.(parents divorced and live a few miles away from each other)I look after my dad Monday to Thursday from 10.00 am to 17.00 and then go to see to my mum in the evenings .(Dad has carers in PWD) mum doesn’t..yet!Then I am back to my house on a Friday (I live 18 miles away).I have a timetable with them both and I have to be very strict with dad,as he would have me running around.He has a lifeline,so if he fell out of his chair they would contact me in the emergency. I have arranged appointments for him etc.But I have now decided if it is on a Friday a carer can put him in a wheelchair etc as otherwise I would have no life.Carers will go to appointments with them .Take them out etc.I have learn’t to prioritise.Sorry not to be able to help more.

 

[Rosettastone57]

@LucertNL Sadly this all sounds very familiar to me.
I empathize with your situation completely. My mother-in-law was very much like this she had been widowed quite young in life and she became needy and demanding with both my husband and his sister although she later moved abroad. She had mental health conditions all her adult life which eventually developed into mixed dementia she was diagnosed in 2015.

She was living on her own in her own property with carers three times a day both my husband and I had financial power of attorney and health and welfare power of attorney . The sort of behaviours you are describing, the clinginess, the rudeness and aggression was familiar to us because this was the sort of behaviours my mother-in-law had displayed many years before the dementia diagnosis. As you have said, my mother-in-law presented very well to outsiders who weren't in the family . She liked to portray herself as a victim although nothing could be further from the truth when she behaved towards us and my sister-in-law. She tried to use emotional blackmail on my husband to get him to come round all the time she was not prepared to accept that we had our own lives to lead. As far as she was concerned any available free time that my husband had, had to be spent with her we were both working full-time and simply didn't have the time for her.
Family members developed strategies to deal with her and we carried on with the same strategies when the dementia diagnosis came along. We became old hands at lying to her about where we were, who we were seeing and where we were going. We found we couldn't have a normal conversation with her about what we had done say the weekend before. If I had told her that we had been to see my brother for example she was flying to a jealous tantrum and rage. So over the years we simply stopped telling her what we were doing. When my husband retired just after the dementia diagnosis ,he didn't actually tell his mother he had retired, because she would have tried to cancel the carers and expect him to be there all the time in his free time. The pressure and emotional blackmail would have been intolerable for him.
As we have power of attorney for finance and she was self-funding, the carers were organised from a private agency . When she tried to cancel them I simply told her that it was not negotiable and that I was in charge.
We were only 10 minutes drive away from my mother-in-law but we kept her very much at arm's-length even as the dementia progressed.
The care agency provided a sitting service for her took her to appointments and out shopping. As other posters have said you need to step back not , easy I know. Your family must come first in this because from my own experiences the strain on the relationship will become intolerable. If you don't step back your mother will come to expect you to do everything all of the time . There will come a point as the disease progresses where she will need more professional care and it's better that she accepts and has it now rather further down the line when she may become more aggressive. The denial that there is anything wrong is very common in dementia.

As other posters have said you need to set strict boundaries on what you would deal with with your mother. My husband saw his mother only twice a week Friday afternoon and a Saturday afternoon he was very strict on the amount of hours he spent there. I saw my mother-in-law about once a week when I would assist with planning a shopping list
or attending for the podiatrist or any other medical type of appointment at her home. As soon as there was any type of rudeness aggression or nastiness from my mother-in-law both my husband and I would simply get up and leave. She was unable to comprehend any reasoning or logic . We couldn't have a normal discussion with her about what was happening in her life or in ours. We simply told her what was happening regarding carers and gave her no choice. Eventually it got to the point where she could no longer live safely in her own home and she went into residential care. I wish you luck

 

[LucertNL]

Thank you all so much for your replies - it is certainly a huge support to hear of your similar situations and sound advice. Advice I have been telling myself for ages but seems to hit home more coming from you all.
We escaped to my brother’s for a couple of days in the end and really enjoyed the break - I even braved telling my mum so the kids don’t have to lie to her when they see her tomorrow!
And I am bracing myself to set some boundaries regarding my available time for seeing her. I can indeed see now that I will have to get used to whatever I do never being enough for my mum.
Luckily my husband is amazing and supports me greatly. The kids are great too and seem to take most things in their stride at the moment.
I gather that dementia is different in everyone so it feels strange not knowing how things will continue and quite what expect - other than the obvious decline.

 

[DesperateofDevon]

Thank you all so much for your replies - it is certainly a huge support to hear of your similar situations and sound advice. Advice I have been telling myself for ages but seems to hit home more coming from you all.
We escaped to my brother’s for a couple of days in the end and really enjoyed the break - I even braved telling my mum so the kids don’t have to lie to her when they see her tomorrow!
And I am bracing myself to set some boundaries regarding my available time for seeing her. I can indeed see now that I will have to get used to whatever I do never being enough for my mum.
Luckily my husband is amazing and supports me greatly. The kids are great too and seem to take most things in their stride at the moment.
I gather that dementia is different in everyone so it feels strange not knowing how things will continue and quite what expect - other than the obvious decline.

How are things going ?
X