Get this off my chest

[HarryC]

Mum has been living with my wife and I (and my step children when not at Uni) for almost eighteen months now. My younger brother and I have LPA and decided it was time to sell her flat and build a "custom built for mum" granny annex on the back of my house which will be of little use when it is not needed.
Whilst it was being built Mum lived in our sitting room and we huddled into our dining room of an evening. Her annex has a sitting room, bedroom and bathroom with her beloved UK Gold TV and You tube so I can play the classic British comedies she loves/loved; everything she needs.
My wife is my second wife and in our seven years together has never really seen the mum that brought me and my brother up (in hindsight dementia has been a gradual process with mum) My wife cooks, cleans, takes mum to her clubs and appointments, she is an absolute star, but mum treats her like dirt then tells others (particularly family) how horrible and what a trouble maker my wife is.
At first we tried the gentle treat like a child approach with mum but that got us nowhere and inclined to make mum try to do less for herself so now it is firm and direct which seems to work better. We get no help from my brother or his wife unless we ask and even then it is only for a few hours, I do what I can when I'm not at work, and we have paid carers come in five evenings a week to get mum ready for bed (it was getting too difficult, mentally and physically for my wife)
Just the other night we checked the safety camera after hearing a noise, mum had got out of bed, taken off her knicker/pads and was walking about her annex calling for one of my sons (who all live out of the area) We went downstairs, into the annex and coaxed her back to her bedroom. My wife got her a clean pair of pads and as I looked in her bathroom there was urine all over the floor, I cleaned it all up, disinfected it, then spoke very sternly to mum to keep the pads on and go to sleep. Her response was "so that's alright for her to talk to me like that?" it was me that had told her off!
My wife saw both her parents die as a result of illnesses brought on by dementia & parkinsons so she is no stranger to it (unlike me) she is now at breaking point. It isn't even her own mother or a person that has ever been nice to her, having spent all that money on the annex I think we are getting close to needing her to go into a home although my brother disagrees as he co-agreed to release the funds to build it but he doesn't have to go through what we have to, particularly my wonderful wife.

 

[Grannie G]

Hello HarryC

It does look as if your mother now needs 24/7 supervision and care. However vigilant you and your wife are, and the carers you bring in, she may still be by herself for several hours during the day and night.

If your brother is not sharing the caring he cannot insist you continue to accept full responsibility, annexe or not. It`s not about the annexe now, it`s about your mother`s safety and well being.

 

[LadyA]

Grannie G is right. Did your brother not realise that your mother's illness was going to progress to a point where it was possible that you couldn't care for her full time at home?

How about you and your wife take a break - tell your brother you both need a break and are going away for about ten days, so they will need to temporarily move in and care for your mum? That might bring home to him the reality of the situation.

And btw, your wife sounds like you got an absolute gem. Cyber bouquet for her.

 

[HarryC]

My darling wife and I have a holiday booked in June and mum is booked in to a local care home that mum actually seemed to enjoy when she stayed there for a weekend last month.
Maybe we should allocate a monthly respite weekend to get us through this tough situation? My wife deserves a medal to be the figure of hate is taking its toll on her as she has to take a plethora of tablets herself for various ailments including blood pressure, her doctor is not happy at what she has taken on for me.
I wish mum would take it out on me, my brother keeps his distance (although only two streets away) he calls her now and then, in fact he called her last night and mum told him that my wife was a trouble maker.

 

[LadyA]

My darling wife and I have a holiday booked in June and mum is booked in to a local care home that mum actually seemed to enjoy when she stayed there for a weekend last month.
Maybe we should allocate a monthly respite weekend to get us through this tough situation? My wife deserves a medal to be the figure of hate is taking its toll on her as she has to take a plethora of tablets herself for various ailments including blood pressure, her doctor is not happy at what she has taken on for me.
I wish mum would take it out on me, my brother keeps his distance (although only two streets away) he calls her now and then, in fact he called her last night and mum told him that my wife was a trouble maker.

Hmm. Pity your brother won't be looking after your mum. Often, it really needs for people to see the behaviour for themselves. I used to explain to my husband's family (I was a second wife too, my husband was a widower with a grown family) about his aggression - but they live overseas. They just didn't get it, because he was always delighted to hear from them. Until one time, when a daughter was visiting with two of her children - and my husband loved his grandchildren! - but the children went to take books from his bookshelf! And he suddenly turned aggressive. His family were so shocked, and talked to me about it afterward, how they knew I had told them about it - but they just had never realised what I had meant!

No consolation - but it seems it's always those closest that get the worst of it, because the person feels more relaxed with them.

 

[Sweetsheep]

Hi Harry we are in a very similar situation at the moment except that I am actually the wife! My MIL lives in our home and I have only been married for 5 years. I only ever saw my MIL socially once or twice a year and I don't really know her that we'll either. Last year we had a crises and as a family decided that she needed full time "supervision". My sister in law (he daughter!) Immediately said she was not willing to take her in. Even though she doesn't work and is much more financially secure. My MIL at that point just appeared to be slightly confused and had her drivers licence taken away. But because she lived in a studio flat there was no way we could arrange for a carer to ever stay. And so at the end my husband said we would do it.

She went to stay with SIL for 6 weeks while we moved house (rented something bigger) that we actually could never afford on our own. My MIL would help us with the difference. And then she arrived.

Within 2 days I knew we had made a massive mistake. She was far worse than anyone had realised. In fact I cannot fathom how she had been on her own. She no longer needed supervision but caring 24/7. She is not as far down the line as your Mum but I am not coping either.

She is incredibly rude, defensive, aggressive, and stubborn when she is alone with me. I walk on egg shells continously. Worst off my husband actually has a travelling job. He is not here in the week. It's only been 6 months now and I am.at breaking point myself as things are not what they seem. She is perfectly normal when anyone else is around. I sometimes wonder if my husband thinks I lie about what she says and does to me. I am unfortunately not such an angel like your wife and I am insisting that her family make another plan. I have a marriage to protect and at this rate it will never survive the disease. I am starting to be come angry, resentful and very bitter towards my husband and his family because they have just left me to deal with it. My husband obviously tries his best when he can, but the only thing that is going to solve this issue is for.my MIL to cared for by someone else. I too have medical issues and went against everyone's advice to do this. But I was thinking it was the right thing to do.

As for the annex...I think if you can calculate £950 per week over the 18 months your mum has stayed with you, I think it would almost even it out. And if it doesn't, I am sure that at some point you can help with top ups if it's needed...but trust me when I say listen to your wife. Because she probably isn't telling you everything she feels and it could cause issues later.



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[cragmaid]

Get a urine sample off to the GP for testing firstly, UTIs linger longer and cause havoc.

Tell Mum that she will be going permanently to a CH ( OK ask Mum if she would like to go to live....) where she will get 24/7 car and attention from strangers rather than the loving care that she receives from your dear wife and you. Obviously phrase this the way that you think can be best recieved. i.e "Mum, I know you think that A does not do things the way you want. Would it be better for you to go to X Care Home again for a trial period to see if you would like to live there permanently" or " Mum you know you are going for respite while we go away. I think A is getting poorly and the Doctor says she is soon not going to be able to look after you anymore"...... don't tell her she won't necessarily be coming home again.

For now, unless Bro is going to change his attitude and share the care, you really need to disregard his comments. I suppose that he sees his share of the inheritance going west. I may of course be maligning him and really he just can't bear the thought that his darling Mum needs to be in care.
Ask for a new care needs review, then do some sums.... if Mum needs a night time sitter at approximately £20 per hour then her capital will go quite quickly.....but her money is for her care, not for potential future inheritances.

You, sadly, have to be firm with Mum and keep on supporting your wife and try to get your brother more involved with the hands on care.

Good Luck.

PS...the annex could be rented to the kids when they've finished Uni!!

 

[TiredHills]

Harry your wife sounds amazing and I'm sure you do this every minute of everyday but make sure you tell her!!

My Husband, 2 small children and i moved in with my in-laws 3 years ago and built an extension on the side of their property. Thinking that one day....in a couple of years that we would be needed for the odd bits of care!! How wrong we were! in 18months of being there we had a diagnosis of Alzheimers for my MIL.

I have just this week given up my 3 part time jobs so that i can be with her pretty much 24/7. My FIL is still alive but has his head very much in the sand and is in denial. My SIL lives an hour away and works full time. My husband is self employed with our family business and works long hours to keep a roof over all 6 of us! The pressure is huge!!

Im however, very lucky. My MIL and i are a little team. She is constantly saying "she doesn't know what she would do without me" and its lovely to hear, but does it make the job any easier?

It is easy for me to sit here and write, Remember, she may not remember what she is saying. In the short time that i have been dealing with this disease, nothing about it is easy.

What i am about to write may be a little controversial but.....
I know that when my MIL leaves this life...I HAVE done my very best to make sure she had happy, healthy and that she had some pride and dignity.

You also deserve a medal Harry....At the end of the day you are caught in the middle. You are trying to protect your wife but at the same time you are loosing a little more of your mum every day...Thats the phrase my husband uses. He is trying to be there for everyone.

I hope a plan comes for your family soon

 

[HarryC]

My role in this is more a case of doing what I can when I can to ease the burden and dealing with the finances. The carers that come in for 45 minutes each week day night have made the bathing side of things less fraught as mum doesn't try to fight them off. I must say when I look at how much it costs mum on a weekly basis for the carers, her three days a week day centres and a small contribution to the food, gas and electricity it pretty much takes most of her pensions. When we need the respite then what is left of her capital is being eroded, we did have a care assessment a year ago but shot ourselves in the foot as mum was not as bad as she is now.
I have been saving like mad for a Caribbean holiday for my wife and I and we go in June, mum's stay in the care home is actually more than is has cost for one of us to have our holiday.
I think maybe a new assessment is due and hopefully this time they will understand our struggles, if they want every penny mum has then so be it but there must be a point when mum is able to get financial help? Regular respite would probably be the best option for all of us and save mum from going into a home full time for a little longer?

 

[cragmaid]

Normally the Social Services start to pay a proportion of the care fees once the client's savings fall below £24K ( approx) and take over funding when the savings come down to £14K however pensions ( Private and State bar £25 approx) and benefits and allowances are still used to partially fund the costs.
The only way that a client does not pay for themselves in total otherwise, is if they receive CHC with Full Nursing Cover due to severe medical needs or if they have been sectionned.

You could ask for an up to date financial assessment.

 

[LadyA]

Is your mum receiving Attendance Allowance? I'm sure that would help pay some of the costs. And although, not being in the UK I'm not sure how the system works, would you be entitled to some discount on Council Tax at least for the annexe?

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[HarryC]

Things are not great, we have found that being "to the point" with mum works far better than treating her with kid gloves, her sarcasm doesn't get any better but at least it achieves her getting herself dressed and attending her day center three times a week.
Just today my brother said to me that people had told him that my wife wasn't very nice in her approach to dealing with mum (too abrupt). Without any doubt that would have been family members who (like my brother) have nothing to do with mum 95% of the time.
I don't intend to tell my wife what has been said as unlike these family members they only have their theoretical feelings to go by. If we didn't use the approach we have developed mum would just sit and vegetate and deteriorate at an even faster rate? We believe it spurs mum on even if in retaliation, even this is short lived but at least it's a bit of spark.
If the rest of my family were to do their bit it would take the pressure off, so sod them!

 

[Spamar]

Do what's best for your mum. I remember laying things on the line to OH - and it worked! Not for long, but I didn't care, it was the here and now that was important.

 

[beejo]

What best time to approach Social Services

Normally the Social Services start to pay a proportion of the care fees once the client's savings fall below £24K ( approx) and take over funding when the savings come down to £14K however pensions ( Private and State bar £25 approx) and benefits and allowances are still used to partially fund the costs.
The only way that a client does not pay for themselves in total otherwise, is if they receive CHC with Full Nursing Cover due to severe medical needs or if they have been sectionned.

You could ask for an up to date financial assessment.

Hello Cragmaid, Very simple question (but now quite long I notice) - at what point can I reasonably request a financial assessment from Social Services (SS)? My Mums saving are plummeting towards the £23.xK mark whilst her 100hrs/month home care is underway. I anticipate that in 6 months she will be at that £23.xK point . Nine months ago SS knew that, but the SW disappeared into the wide blue yonder with nary a glance (except a curt 'goodbye' letter) and a 'Use care broker and private care company' suggestion.

Is it reasonable to ask for another SW? I can read the websites that the LA have, but nothing like asking an experiential question of someone like yourself.

Are SS likely to countenance a home-care scenario? I can see Mum's mental health plummeting faster than her savings if a care home is recommended.

ps Mum has early stage dementia - but has stabilised with good home-care (all self-funded of course) these last 6 months. I live overseas (the antipodes), and am back for another few months to manage/(be involved in anyway) the longer-term care planning.

Is the NHS(via GP) likely to assign a Registered Nurse? There doesn't seem to be an Admiral nurse in this region as far as I can ascertain.

nb: Property & Finance COP order completed January 2017