Advice Please

[Dave W]

Three weeks into moving into her residential home (there's a long account of the trials and tribulations up to this stage elsewhere), Mum is showing every sign of being pretty unhappy there. The next sentence is going to sound cruel, but knowing my mother as I do, there's quite probably an element of being determined to be so. (She's a woman who's had her own way in pretty much every way for decades, and gets very resentful when she doesn't.)

There is also a huge element of complete and absolute refusal to accept that she has any kind of problem, despite a clear diagnosis of mixed dementia from an MRI scan and no less than four psychiatrists, and a whole history of supporting behavioural evidence. (She keeps telling me that she was "completely cleared by the hospital, except 'that doctor who put me in here'" - she took an instant dislike to the consultant pyschiatrist, partly as I suspect she realised that this was one person she couldn't play the denial card with.)

In choosing a home, I was faced with the dilemma of leaving her in her own neighbourhood (a 3 hour journey from me) or moving her nearer to us so that we could visit more easily. In the end, I chose the former. Quite apart from an endless pattern of 'I just want to go home' (which is perfectly reasonable to some extent as well as typical of her condition, except that's all she said when she was at home, at which point she believed she had three homes and had been put in one of them which she didn't recognise by some strange men one evening; she was phoning cabs and demanding to be taken to the house she was standing in at one stage), she is complaining non-stop during our visits of wanting to be in her own area - the opposite of what she was saying while in hospital.

The six week review is looming. Having raised the issue of meals with the home manageress (food was her first repeated complaint, and the cook is now checking every menu with her before cooking, and offering to let her help in the kitchen), should I speak to the home at this stage to see what their impressions are? Shortly after she arrived, the manageress commented 'I think you're going to be the one that gets the blame for everything', which struck me more as astute than surprising - it's the pattern of our relationship for 45 years. (She tells everyone else who proud she is of me behind my back, but is belittling, rude or insulting to my face: it's a lifelong pattern). I wonder how far she is seemingly reasonably settled and happy to them, and venting everything at me? (When he was alive, my father spent many an hour apologising to me for her behaviour towards me, usually telling me "She doesn't really mean it",with me usually replying "Then why does she keep ******* doing it then?").

Our observations since she's been at the home is that she is more lucid than when in hospital, although less so the last few days, but whether this is a more stimulating and caring environment or just a lucid phase (her condition is very, very fluctuating) I couldn't begin to guess. While in some ways this is lovely to see, it does mean that she's questioning *everything* (where's everything that was in her house, what's happening with her money, how did 'that doctor' find this place), and tonight I got an hour's non-stop barrage. I'd like to feel good about being able to vist her more often, but tonight just made me feel like slashing my wrists or driving into a brick wall on the way home.

I'm sorry this all sounds so horribly negative, and probably really selfish, but I really do need to vent this evening myself.

 

[rummy]

Hi Dave,
It sounds to me like you are going above and beyond the call of duty. I finally came to the realization that I am not going to make my Mom happy because she really isn't capable of sustained happiness anymore. I am only responsible to making sure that her needs are met and that I can spent as much quality time with her as I can. It will never be enough because there is no such thing as enough. If I catered to her 24/7, it would still not make her happy. So I do the best I can, realize that at this point it is AD that is dictating her mood, behavior, physical needs and peace of mind. If I do make her happy by spending time with her or doing an activity, she forgets it within a few minutes. But I realish that time as best I can because I know the only thing that is for sure, is that the AD will get worse.
You must back away some for self preservation. Realize that you are talking and interacting with AD, not your Mom. Even if what she does is a grouse manifestation of the way she has always been. It can't be rationalized. Do what you need to do to be happy and have a good life and maybe that mood will rub off on her. You cannot let her be abusive, it is like dealing with a two year old. They will do it if they can get away with it. Say, if you act this way I will leave and then leave.
Take care and give yourself a break, your doing a great job.
Debbie

 

[Margarita]

but is belittling, rude or insulting to my face: it's a lifelong pattern

That what my mother was like to me & when mum got AD it magnitude 100 time more ,I had to do what rammy said "will leave and then leave"

 

[Michael E]

Really interesting the levels of comprehension and the loss of 'consideration for others' - 'good manners' - desire not to hurt people...

Yesterday we had various people in the house - which I think/hope is stimulating and makes Monique's life more interesting.... In fact her response is to utter the words (in french) 'Lazy ********' - when the workmen are in earshot! 'When is he leaving' about a man who has called several times, has a little dog and is very pleasant - and to the rest - 'it is my time to have Michael to my own'..... She then questioned in front of a friend that I was dipping into her savings! (I did some weeks ago amalgamate hers into ours 'automatically' with her permission!

It is such a surprise which things register long term and which are forgotten in 10 minutes. Cannot really remember her daughter but can remember some small financial dealings - there is possibly an element of remembering what seems really important and putting other things on the back burner...

Michael

 

[Lynne]

Oh Dave, sweetheart, that week's R & R didn't last long did it!
Just enough to highlight how bad things are for you now you're back home, by the sound of it.

You're not being negative or selfish, you're being HURT. And it hurts to have vicious things said to you by your own parent, even if they are suffering from what is - in effect - a mental affliction which has built on her 'lifelong pattern' of being cruel to you. You are quite right, she's unlikely to change much, so don't expect her to. She's NOT going to turn into a sweet little old lady.

Take a deep breath & read through what you wrote. She has been thoroughly diagnosed, you have gone to great lengths to find her a good place. In this (& previous) posts you have said that she acts quite differently when you're not there, even praising you to the care home staff. It is obvious to them that she gets rid of any anger & spite in your direction, even though she boasts about you in your absence.
Would she be likely to be any less spiteful to you if you visited with someone else, like your partner, or a friend? Or would she just take extra delight in embarassing you in front of someone else?

By all means "should I speak to the home at this stage to see what their impressions are". You may find that their opinions are that she is actually settling in. I don't suppose she is the only strong character they have to get along with, she's probably not even the worst! But you already know that she is much more civil & better behaved when you're not there. Ring up now and make an appointment to meet with the manageress; she already understands that there are difficulties in your relationship with your Mum, but also appreciates that you are doing your best despite her hurtful treatment of you. She won't be able to make your Mum be nicer to you, but I'm pretty sure she will be able to reassure you that the arrangements you've put in place are actually working well. I'm also pretty sure that if you DID uproot her again and find somewhere nearer her old home, you would just go through the whole performance again ... & again ... & again

Sympathy & best wishes

 

[Margarita]

I don’t know have my dough’s ,since I walk out on mum & left her stewing ,she got so worried that I would never come back that ishe does not do it to me anymore, or maybe its me that change my attitude towards her .

This may sound silly ,but my mother was always a hard worker under a lot of stress & she took it all out on me verbally my dad always said that she did not mean it . my dad could not stand up to her with out getting in to a fight with her .

One day in an argument with mum she said are you your dad? you look like him , It made me stand back & try to analyze there relationship ,the whole situation all I new is that my father use to hold back a lot of his emotions towards her maybe the love had gone & mum with AD was confusing my relationship with what she had with dad & her past with him , to my relationship she has with me now

All I had to say to her in the past is :-I am not dad, when she starts, meaning dad never left her, but I can.

Call it blackmail? I call it asserting myself with love .In the past year or so our relationship has improved & she really has stop being verbally Cruel to me .

 

[Bets]

This is a hard one, I find. Living (and dealing) with an adult who often behaves like a child and still trying to behave towards them with respect and dignity. Well, it's sometimes impossible, isn't it?

My husband often gets annoyed with people when we are out shopping, bashing into them with the shopping trolley or glaring at them when he considers they are in his way (it no longer occurs to him to simply say, "Excuse me"). If he gets stroppy when we are out I have sometimes resorted to saying "If you are going to behave like that, I am going home right now!" That usually does the trick, but I feel dreadful saying it.

As for saying, at home, "If you're going to be rude, aggressive, angry..., I'm leaving", well, that's not so easy when you live there too! I usually retreat to my room until I've calmed down and he has forgotten whatever it is.

Yesterday, the cover fell off the fire alarm and he was unable to put it back again properly. (I can't do it either, unfortunately). He took a box of matches and began lighting paper tapers to create smoke (and ash on the carpet) to see if it was working or not. No amount of asking, reasoning (don't say it, I know, I know!), and finally getting downright angry on my part did any good, except to make him angrier than I think I have ever seen him. I had to hide a second box of matches before he eventually gave up. Something else to add to the list of jobs for our son.

I know there are some of you who have lived with dementia for much longer, but I have had seven years of this and, frankly, I have had enough!

Bets

 

[Áine]

Hi Dave

No advice to offer, but just thought I'd add a reply since I'm going through similar. Dad is in his second week in the nursing home I've chosen for him. He had about a month in respite care before that so he's been away from home for a good few weeks. All he says is that he wants to go home. He's not hurtful to me like your mum is (my mum used to say pretty awful things ... but dad is OK) but he's miserable and fed up, sometimes doing his best to make the best of it, sometimes fed up and a bit aggressive, and often just spaced out and ****ed off. I feel dreadful for getting him in there. Visiting is painful, cos he doesn't understand and he can't hear when I try to explain why he's there, and why he can't go home. He forgets how it was at home: not knowing if it's night or day, not being able to dress himself properly, not remembering to eat, not able to wash, shave, bath himself, not able to operate the fire, the microwave, the TV, not remembering to lock his front door, going out and losing things and getting lost himself etc etc etc. He just wants to go home and it all be like it was 20 years ago.

I'm also anxious about how it will be and whether he'll be accepted long term there. From their point of view I guess he's not causing much trouble. But it's difficult to get used to all this.

Best wishes

Áine

 

[Norman]

Quote Michael
Really interesting the levels of comprehension and the loss of 'consideration for others' - 'good manners' - desire not to hurt people...
Michael
I get a lot of verbal abuse now. Thank you and please has gone out of the window.
If I am feeling a bit rough there is no sympathy,it is totally ignored.Peg is rude to callers at times now.
I think I told about the Sikh who pops in to see us.
He came and said"Hello Peg remember me"?
She replied"No and don't like the look of you,you can go back where you came from".
He told me not to give it another thought ,he has a Mother who suffers with chronic depression,so he understands similar problems.
It can be embarrassing and I do wonder what is next!!
Norman

 

[Amy]

Hiya Bets,
How are you doing, you sounded so fed up in the post above?
This damn illness is so painful because it takes away the person that we love; a person that we have shared with and depended on and loved, can become demanding and mean; the relationship feels so much one way. I know at one stage when my father was really struggling I sat him down and said "You have to make a decision, either you can care for mum, or admit that you have done all you can and I will take responsibility for organising her care. This is no reflection on you, I will love you just the same."
Do you share with your son how you are feeling Bets? It is a family responsibility, not just yours. It sounds to me as though you need some support, some help in planning the way forward for you and your husband.
I don't know about you but I find it very difficult at times reading posts from people who seem almost to be 'saints' - or maybe they just cannot voice 'I have had enough' - though I am sure that at times they all want to scream it out.
Take care.
Amy

 

[jc141265]

Dave,

All I can say is I know how you feel. Sayings I hate...'blood is thicker than water', 'you can choose your friends but you can't choose your family', I know how it feels to have a mum like yours, who you love and care for but hurt from every time she is mean, even though you are annoyed at yourself about that because for gods sakes we are grown ups now, why can they still hurt us??!!

Unlike you it is my father (who often apologised to me, for my own mother's peculiarities) with dementia, but I often have shuddered when I thought about, what if it had been mum. At least with Dad, I have no trouble forgiving again and again, for the mean things his dementia causes him to do to me. If it had been mum, I know I would have been just as good a daughter to her as I am to Dad, but every act of kindness would have been tainted with every memory of the pain and hurt she has put me through, and every time she did or said something mean, I would wonder if it was the dementia or just my mum being hurtful again (with Dad I just keep reminding myself of how much he loved me, and dismiss his current behaviours) I think that if it had of been mum, that it would have been, if not harder, it would have required a completely different strength, and one I can't even contemplate mustering at this point.

So I say Dave, vent away, the pain a mother can give their child is something that festers inside, society doesn't let us say it out loud very often, and there is a huge amount of guilt as a child to even dare to suggest our parent has hurt us. I know even as I am typing this, there is a little guilt ridden voice saying to me, 'how can you say such horrid things about your mother??'...but I've learnt over the years that if I don't admit to myself how she can make me feel, I can't seem to move on. Vent away Dave, and also take heart that by you being brave enough to say how you feel, you give credibility to others who have had the same experiences but have never felt like they could say anything because society won't hear bad things said about mums. You are nonetheless being a good son and deep down in side your mum probably knows that....if she's like my mum, she just lashes out to knock you down to the size she actually feels inside, doesn't want to hate herself alone, but wants to bring you down to where she is so you can both be miserable together...its love, just not a healthy unselfish kind.

Best of luck, and am here to talk to any time you need to vent.

 

[Stimpfig]

Awful things that our mothers said

Hi Dave

I would have asked you to 'let go' but this is easier said than done. I do have a problem with past resentments which keep cropping up every now and then.

I have brought my mum all the way from India to live with us in Germany (you will find my story in the annals of TP- so won't repeat here) and although I work, I am able to manage my time to be my mum's sole carer and companion, in a foreign land and in a foreign culture. As such, I am the only significant person she can relate to . My mother needs to wear dentures but when at home, she prefers to be without them. The strange thing is when mum is without dentures, I see her in a totally different light and am able to give her my best and am full of compassion and love for her ( a sweet, helpless thing !) But when she wears her dentures, she is then my old mum, the one I still seem to harbour resentment against, which is when I find myself irritable, seething, exasperated, resentful - all of which shows in my tones and behaviour and even while being so conscious and aware of this transformation in me, to my dismay, I can't seem to change it.

My mum's previously neurotic personality could be attributed to her own insecure and somewhat traumatising childhood wayback in the 1920s and 30s. My insight into the circumstances of her own life, I had believed, had helped me to resolve any issue I had with her in the past, to 'let go' until I noticed my reaction to her with and without dentures. I believed I could forget, forgive, love unconditionally, change perspective etc. etc. but I guess, I have only done it at an intellectual level

So Dave, as you can see, there are many of us here who have tales to tell. I would take it easy for a while and visit the Tea Room

 

[Dave W]

Contemplating

Sue/Nat and everyone - thanks for messages. You're right - it does feel like you're sailing in the face of a taboo to not unconditionally love her, but even without this disease that would have required levels of saintliness hitherto unrecorded. Thankfully, the weekend has been spent in Dorset at the wedding of one of David's cousins and was a wonderful break. Not just a beautiful wedding, but a vast motley crew of happy company (David's family have welcomed me very warmly from the outset, and that was a huge boost to the spirits.)

Back here in the reality of a Monday morning, it looks like Mum is now writing to her former neighbours along the lines of 'there's nothing wrong with me and I'm being held captive here' etc. You find her a situation where she can have a little more independence, so she uses it to create more little problems to deal with. Oh joy.

I can feel that I am mentally trying to distance myself as far as I can from the whole situation, just to survive it. As Aine (I think) said, I suspect the home don't think she's being a particular problem, but I shall try to speak to them today. Either way, I think I have one last decision to make: to leave her in Olney or to ship her back to Surrey where friends may visit her occasionally. But I can't help but think that I have to cut back our visits. If she simply will not accept there's any kind of problem, I won't resolve that by banging my head on metaphorical brick walls.

 

[maria29al]

Hard to understand

Reading all the above I found it quite hard to understand. I sympathise but have little or no understanding of how it must feel to be on the receiving end.

Altho both my parents have AD, my Mum hasnt got to the stage of not knowing me (she forgets Dad regularly) and she hasnt really been nasty to me...yet! My Dad, who is in the Nursing Home, just seems to be asleep all the time. On the few occasions that he has been awake he is so frail he cant really talk out loud altho he tries to and gets a little agitated when I cant understand him. I so desperately want to chat with him again...whatever form that would take but dont think it is going to happen and I really miss him.

Mum is fast going down the road of no return and her behaviour becomes more erratic daily. She is almost childlike at times and I feel rather embarrassed by it sometimes. She talks to total strangers like they are old mates...leaving these poor people very confused! and bewildered!!!

I think I will experience what I have just read about with Mum, but not with Dad. Dads diagnosis was always a bit "iffy"...one visit he had AD the next he didnt so the family were never very sure. He certainly has a form of Dementia but not sure which one. Maybe he just hid the symptoms well and then became so ill through the infection that he cant display them anymore as he is always asleep!..and is it "asleep" or just dying??....I dont know.

Sorry for rambling...I meant to say from the beginning of this "novel" how sorry I feel for everyone who is experiencing the hostility from their loved ones. I know its coming my way from Mum soon and I am dreading it. Thank goodness for this site....a bit of sanity in what appears to be an insane world at times...and we all keep on going...we should really pat our backs on a regular basis.

Lots of love and stuff

M
x

 

[Brucie]

I know its coming my way from Mum soon and I am dreading it

Hi Maria

please don't assume things that happen with other people will necessarily happen with your Mum automatically.

I have found it best to be pre-warned, so I know what may happen and how to recognise it when it does, and how to interpret and deal with it then. But until it happens I just trudge along as usual.

If you worry about everything that might come your way, it will just all get to be too much.

One step at a time, one day at a time.....

 

[noelphobic]

Thankfully, the weekend has been spent in Dorset at the wedding of one of David's cousins and was a wonderful break. Not just a beautiful wedding, but a vast motley crew of happy company (David's family have welcomed me very warmly from the outset, and that was a huge boost to the spirits.)

Hi Dave,

Is David your partner? How confusing that must be if you both have the same name!

It's great to hear that you have a good relationship with his family which must be a great help when relations with your mum can be difficult at times.

 

[Dave W]

(Bangs head on desk)

To quickly answer the question, yes David's my partner. And the stock answer is 'we have no trouble telling each other apart' (Less glibly, to our families he's David and I'm Dave; to everyone else, we usually work it out from the context but we've had some amusing blunders!).

In the meantime, a lovely weekend away done and dusted (along with a less than lovely 13 hour working day), it seems Mum is now kicking up more dust. To quote anonymously from an email from one of her former neighbours:

"We have received a couple of pathetic letters from your Mum- We're sure you can imagine what she says. She simply cannot understand that she cannot look after herself and feels that she has been betrayed by you and the system.Presumably she is seeing a doctor up there. Are you getting any help from the local Health authorities?"

At least to my face she's mostly blaming the hospita psychologist, so I guess that's a small blessing. So tomorrow, as I don't start work till 10 I'll be phoning the home first thing. These are my current questions:

a) what's your perception of the situation and how well she is settling (if at all)?
b) are you aware she's writing these kind of letters (from an answerphone message when I got in tonight about about 8.45, the recipients are not alone)
c) how do I answer the endless "I just want to go back to my own little house" when any explanation just sends her into a rage of denial
d) would moving her back to her own area - where friends may visit for a while, but there are no guarantees, and where comparative costs would mean we'd have to move quickly to sell her house to keep fees paid - be at all helpful? (It would mean we would visit far less often, and couldn't do so other than at weekends; we were strongly advised against this by the hospital)
e) what involvement has there been so far from the home's GP and or local services?

I'm sure the good people of TP will let me have their thoughts on other questions so I can come back to the screen later and review the plan. In the meantime, I'm off to cook supper before IBS devours me and David perishes through starvation.

TTFN

 

[noelphobic]

I wasn't going to ask you if you could tell each other apart! Hope your head isn't too sore! If it makes you feel any better this is the second time I have started typing this message. The first one was wonderful - humorous, profound, wise, moving, eloquent - you get the picture!

Then I hit something on the keyboard and it's vanished into virtual thin air, so you'll have to put up with this garbled, tactless, inane excuse for a message!

The letter writing is a problem. I would imagine the home are probably aware that she is writing letters even if they're not aware of the content. Presumably someone posts them for her?! They can't really stop her writing them either, I wouldn't have thought. Probably not what you want to hear and not much help but I would love my mum to even be capable of writing a letter, although I obviously wouldn't enjoy explaining the contents to people.

As for whether moving her would make her any happier then I would say probably not and could do more harm than good. One thing I have learned in 16 months, one EMI home and one nursing home is that most residents say they want to go home most of the time. From what people on here have said, many people also ask to go home when they are already there! You will also find a lot of very elderly people asking for their long dead mother or father.

Oh well, I told you the first message was better and now you'll never know!

 

[Amy]

Hiya Dave,
Your mum certainly doesn't intend you to have an easy life at the moment, does she?
Right, if it was me, the first thing I would do is thank the E-mailer, and ask them to pass round the message that mum is receiving good care; that yes she may be having a little trouble settling, but you believe that would be her reaction even if she was closer to her own home. Ask them and others to write to mum saying how lucky she is to have a son like you, and how fortunate that you are able to visit her regularly. What I see in mum's Nursing Home is that it is family that do the regular visiting.
You also need to think what is the right thing for you in all this. You obviously cannot walk away from your mum; as her condition deteriorates she is going to need more support from you with simple things like eating. Do you want to be having to make that journey at least once a week? Or is it better to ride out the storm now?
I don't think you do answer the question "I want to go back.." I would try distraction. You cannot give her the answer that she wants to hear.
Hope your supper was good!
Love
Amy

 

[May]

Dave
I'll lend you (only lend mind!) my red spot on the wall if you like......very useful when all else fails. You're going have to supply your own music and (looking at your photo) a long haired wig .
As Amy said, your Mum's certainly not making life easy at the moment, keep going, and do what YOU feel is right. Take care.