Just to talk

[gerrystret]

I'm new to the forum and am humbled by the posts I've read and the way many of you are coping with almost intolerable situations.
My mother-in-law was diagnosed nearly two years ago with vascular dementia and AD. She lives alone in a big house about a mile away from us. She has always been independent and even at the age of 83 still doesn't like being helped. The main problem is that my husband and I are doing the best we can but we have two children aged 14 and 12 who need us and we both work (although I'm only part-time). Although we've been bringing her meals she has lost loads of weight as she refuses to eat unless it's her regular meal-time (5pm at which time I'm busy with the kids). Her OT organised carers to come in at 5 and make her a meal but we've found out that she meets them at the door and says she's already eaten. Her main wish is to stay at home until she dies but we can't seem to make her understand that if she will just accept the help that we and others can offer she might have more chance of achieving this. I came home the other day so upset as she went mad at me about something that my husband said I should have a break for the rest of this week and it's been such a relief! The truth is that she wasn't a particularly nice person before all this and it just seems to have exacerbated her worst tendencies.
There I feel better now for having got that off my chest! Please don't think I'm awful!

 

[Grannie G]

No one will think you`re awful, gerry, you are experiencing what most of us have experienced, and still are experiencing at some time or other.

Independent, strong minded and perhaps difficult people are unlikely to suddenly become grateful for help, once they develop AD and VaD.

If your MIL really wants to be able to stay at home until she dies, she probably feels she is showing signs of weakness and inability if she accepts help, especially from strangers.

Perhaps for a while, some cold meals could be made up for her, so she can eat whenever she wants. There are many ways of making very nourishing sandwiches, and if she had yoghurts in, and ready made custard, or even rice pudding, she could help herself to food when she wished.

It is not absolutely necessary for her to have a hot meal every day, preferable perhaps, but not necessary. If you keep her fridge and cupboard stocked, it might give you some space, and you never know, she may even ask for help eventually.

I`m sorry I can`t be of more help, and someone else may have better ideas, but trying to persuade someone with your MIL`s condition to try it your way is hard going.

take care xx

 

[Kate P]

Hi Gerrystret and welcome to TP.

Please don't feel bad about what you said - I have found that, as much as I love my mum, the more challenging behaviour she exhibited before her dementia is now doubly so!

I can appreciate your diffculties - I have a young family myself.

I will say that it can be difficult to reason with people with dementia as their logic is no longer the same as your logic - not to mention that they tend to cling to old routines and habits.

Would it be possible to get the carers there before 5 pm so possibly before she's thinking about eating? Do you have any other friends and family who could drop round with a meal at 5 while it is impossible for you to do so? Could meals on wheels drop round a hot meal at lunch so she can have a cold meal in the evening or would that also be too much change to routine?

Also don't feel bad about needing a break sometimes - I think that in order to keep helping whilst juggling your many responsibilities you need to have breaks or time out for yourself.

I hope you find TP to be a wealth of good information and advice as I have.

 

[Margarita]

but trying to persuade someone with your MIL`s condition to try it your way is hard going.

Sure is hard , sounds like you done the right thing taking a break away

 

[gerrystret]

Thanks everyone!
We tried bringing round sandwiches and things in the afternoon but she forgot to eat them! She still buys food but doesn't eat it and I end up clearing decaying stuff out of the fridge periodically. The thing is that I wouldn't be too concerned except that she's steadily losing weight and is only just over 8st even though she's a fairly tall woman. She hasn't many friends (the ones she has are in their 80s) and the only family who live nearby are my husband and me. Her OT is good but I asked for a social work assessment about 4 months ago and even though she showed definite signs of confusion when she was assessed they discharged her. She has also been turned down for the lowest rate of attendance allowance although we've been advised to re-apply for that. I don't know if anyone has any advice about that?

 

[Kate P]

I'd absoloutly reapply - especially as she has carers coming in to cook her a meal as she cannot do it herself - this is one of the main elements of attendance allowance.

I would ring the relevant office and ask for the local services team to come out and fill the forms in for you - they're very good and they know what needs to be said to get the right outcome.

 

[Grannie G]

When you apply for Attendance Allowance you must remember everything you do for your MIL.

Would she be OK if you didn`t `attend` to her needs? Might she get food poisoning if she ate food from the fridge that was mouldy? Would she eat, if you didn`t go round to remind her? Does she forget to eat, might that be the reason why she`s lost so much weight. Is she at risk?

Read each question carefully and think about all the time you spend worrying and helping to care for your MIL, even if she doesn`t want it.

Love xx

 

[Tender Face]

Hi Jerrystret - I confess I had to read your post several times to make sure it wasn't my mum you were talking about!!!!! Very similar circumstances and characters it sounds like! Mum is adamant she always wants to remain at home - and adamant too she will have no-one come in to help.

What I must say is how fantastic 'professionals' have been about the situation - and how helpful they have been to me in supporting my concerns that in my own circumstances I simply cannot be 'Superwoman' for her alone (nor keep my patience and good humour with her all the time).

With a LOT of persuasion last year she accepted a 'buddy' (through Age Concern). This was the OT/CPN's way of introducing her to the idea of having people come into the house and in theory 'paves the way' for when carers become an absolute necessity. Buddy has since introduced her to and escorts her to daycare (she thinks it's a 'club'!). More recently, with things in decline a referral was made to social services and she is now on a waiting list for another daycare centre at least one extra day a week as soon as a place becomes available. Mohammed and mountain stuff - if she won't have people in then she'll have to go to them!!!!! It may not be a lot - but it gives me extra days when I don't need to worry about what she is eating or her being so isolated in her own home ....... and she has really enjoyed her 'club' and clearly gets a lot of stimulation from it ..... but now, of course she is adamant she doesn't want to go to daycare!

Best advice I can offer just now is be honest with anyone who will listen - social workers, OTs, your own GP, any local support groups etc etc. Grab all the support you can for yourself. One of my worst faults early days was to pretend to myself and everyone else that I really could cope with all the juggling - and as mum becomes more self-centred (not to mention downright ungrateful and antagonistic at times) it's getting harder ....

It helps so much just to come to TP sometimes and offload - it only takes one other person to say 'I know just how you feel' and it's amazing how much it helps!!!!!!

Much love, Karen, x

 

[jenniferpa]

The thing when filling out the attendance allowance forms is to put down worst case NOT best case and make sure you include things that, although she may be able to do them eventually, are exceptionally time consuming for her. For example, if she can dress herself, but it takes an hour, or clothes are on the wrong way round or something, then she needs assistance dressing. Just because she might be able to use a kettle one day, if there are sometimes she can't, or if in fact she SHOULDN'T becasue it's not safe, then that needs to go down. These forms are not the time to be reticent. Think of all her health issues: does she have arthritis, how's her hearing and her eyesight? Put it ALL down. Focus on things that are potentially dangerous: inappropriate food storage, failure to take medication for example. Think about areas of her life where compromises have been made because of her abilties or lack therof. Even if it's something that is "ok" (e.g. always eating cold food) if it were an actual choice, remember it's not a choice if this is the only option.

I think you may have been a little too reticent when filling out the form last time: I was told by Age Concern that once you're past 80 and you apply for AA, it's unusual to be turned down.

 

[christine_batch]

Welcome to T.P. Gerrystret,
You are not being awful with regards to your mother in law, just being honest. So many of us have the same feelings that you are going through. It is even more difficult when you have young children. I looked after my husband for 4 years and he was first diagnoised at 58. Although I am disabled I loved picking my grandchildren up from school and babysitting. The powers that be placed my husband in a Care Home in May. As both of my daughters are full time working mums, I love spending the time with my grandchildren. I visit Peter on a regular basis and although he is in the final stages balancing time with my children and grandchildren. Having the break from caring is essential for you and your family. You can only do your best and as for form filling in you must persivere. I had the same problem and on the 2nd attempt Peter received what he was entitled to. As for the food, that is another thing that I experienced with Peter. He was always eating (in secret cakes etc) but he also lost a great deal of weight. I admire you for what you are doing and never worry about letting off steam as you will read on T.P. we all do at some time. Good Luck. Enjoy you break. Christine

 

[gerrystret]

Thanks everyone - that's been really helpful. We'll have another go at the forms this weekend - doesn't your heart just sink at the thought of going through the whole repetitive process again!
Best wishes to everyone and look after yourselves and your loved ones

 

[harvey]

Your story could be ours!

MIL is very similar, very independant, living in a large house on her own. It is too big for her but she manages to keep it almost spotless. We arranged carers to come in three times a week but there is not much for them to do as she wears herself out making sure it is clean and tidy for when th carers arrive!

She is reluctant to accept help of any sort. She has lost quite a lot of weight but insists she is eating and tells us what she has had for her breakfast, lunch and dinner. She told us not to cook for her anymore as her freezers are bulging (with ready meals), she has a bit of an obsession with buying more food than she can ever eat. If we ask why she needs so much food she tells us it is in case she has unexpected visitors! We are the only visitors she has regularly, absent family members have managed to see her twice in the last 6 months.

We feel guilty that she will not let us help her. I am trying to plucK up the courage to contact SS as she would consider it beyond the pale. Without contacting SS we are coping as best we can. She does not seem to realise that as we both work full time we cannot spend as much time with her as she would wish. If she rings during the day and gets the answer machine she sound quite upset that we are not there. When we call her back in the evening she is surprised when we tell her we were at work.

We have had some awful episodes, accusations and insinuations. She has fallen out with just about everyone and wonders why she does not have visitors. Having said that we have had a few weeks of her being almost normal, no abuse as such but she does make comments that leave us feeling guilty. It has been so nice to be able to hold a conversation and have a laugh with her. We hope it will last for a bit longer. It is at times like this that I wonder why I have been so upset and exhausted over the last few months.

Her solicitor has managed to persuade her to appoint us as EPA so that is a huge relief. She would never have agreed to it a couple of months ago. She is not capable of managing her finances on her own. She knows where all her bank books are and how much is in them but she would not be able to ring up and sort any problems with the bank. She has asked us to sort problems out and cannot understand why they will not give us the information. She certainly has a slow processing problem, she would not be able to understand.

I understand how you are feeling, I have been there many times, lost a lot of sleep wondering what we are going to do. TP has really helped me, not only acting as a pressure relief valve but reading other members posts, there are so many similarities to our own experience. Although we realise that the mum we are trying to care for is a completely different personality, TP has taught us to see that it is the illness that we are dealing with. When we are having a bad time TP helps just by showing us that there are others in the same boat. I do not post often but my heart goes out to all.

Polly

 

[gerrystret]

Thanks Polly and everyone
My husband is over visiting his mum at the moment so I'll find out how she's been in a while. So many stories are similar to ours - apparently the carers who were coming to cook her a meal were greeted at the door by her munching a piece of cake and insisting she'd already eaten! She's so plausible we don't always know if she's telling the truth or not and then some of her wilder stories turn out to be true!

 

[Netty]

This post sounds so much like us too!

Mam a mile away in a house far too big for her. Me with two small children etc etc.

Decided to move her up to a cottage on our premises thinking it ould be easier all round if we were nearer to her. We could make sure she was eating properly, taking her tablets as she should and keeping her place clean and tidy etc etc etc

We were so nieve! She refuses any attempt to help her, seeing it all as a "stigma". She was extreemely independent which is getting stronger as she deteriorates and the truth is that we are completely powerless to do anything that would be of benefit to her.

Its soul destroying on times. I wish I could give you some answers, but sorry I have none!

The only positive thing I can say is that TP has been fantastic for suport and information.

Annette

 

[fearful fiona]

Dear Gerrystret,

Your mother in law could be my mum - there's a lot of them out there. They can get so cunning can't they?

TP is the best forum ever, there are so many of us with similar problems and we can genuinely say "we know how you feel" because we do!

Good luck!