Just need to tell someone who understands

[uselessdaughter]

Just had an awful weekend with Dad. We arrived to be told by a neighbour that a few days previously she had come across Dad trying to get on the local train to get into the next town to pay his gas bill (I arranged some time ago for it to be paid by Direct Debit). Dad did not have enough money as we make sure he only has a few pounds on him in case anyone comes to the door asking for money. My brother keeps his chequebook for the same reason. She paid his return fare although she was not sure whether to just tell him to go home and she was worried about him. Anyway he must have found his way home again because I had telephoned him the same afternoon and he was back home then. He never normally goes out.

When my brother and his family arrived for lunch (somehow it is always me who has to provide the food even though we travel nearly 200 miles to get there – but that’s another story!!) we had a quiet discussion in the kitchen about Dad’s safety and we decided to have yet another talk to Dad about moving to somewhere where he has more help. My brother also admitted that twice lately he has had to go to Dad’s late evening because Dad has rung so say that he has lost his keys and cannot make the house secure. When my brother got there everything was locked up and the keys were in their usual drawer. It was lucky that it was not nights when my SIL was working or he would have had to get the children up and take them as well. It was not fair to have the discussion while the children were there so Keith and I tackled it again after they had gone.

We tried to discuss it calmly and put forward our concerns for his welfare but he just repeated over and over again “I’m not going into a home, I’m not going into a home”. He accused us of wanting him out of the house so we could sell it for the money and then went and got the bread knife out and said “go on, you might as well stick that in because if you put me in a home you’ll be doing just the same”.

Anyway by this time I’m sobbing and Dad is shaking with anger so we decide to change the subject.
Of course after about half an hour he has forgotten all about it. I make some tea and we put the TV on. All evening the TV goes channel 1, channel 2, channel 3, etc, round and round and round, interspersed with him getting up about every 10 minutes to check the back door is locked. By about 9.30 Keith and I are at screaming pitch with it all (we fully appreciate he can’t help it) this so excuse ourselves by saying we had an early start and go to bed. (Where I do not sleep at all).

The next morning Dad had forgotten we were even there and starts looking for Mum who died 12 years ago. He also asks if he is at home or at our house. We were taking my MIL out for her birthday lunch but I said I would stay with Dad if he was not more with it by the time we had to leave. Keith was furious because we spend little enough time with her as it is because of Dad. As it turned out Dad was back to “normal” so we did both go to lunch but Dad got very tearful when we had to go and said that no one cared about him and everything we do is for MIL. Keith and I were icy with each other but I hope the others did not notice too much. Oh joy! We are still not speaking properly. He understands fully my concern for Dad but his Mum is also 87 and because Dad is not well we cannot just leave her out all the time.

So this morning I feel so totally drained and exhausted (hardly any sleep again) and haven’t even made it to my usual refuge of work. We can’t all keep on like this but I don’t know what to do. Dad is determined he is not going anywhere. My brother and I are sick with worry that he will go out and get lost, especially with winter coming on, or that something else will happen that we should have prevented. There is no way Keith and I can cope with the repetitive behaviour day in day out in a two up two down house if he lived with us and in any case the last time he visited he did know where he was or who I was.

Sorry for the ramble but I need to write it down before my brain explodes. I know lots of you are in much worse situations. I have never felt more like my username.

Linda

 

[Grannie G]

Hello Linda

It is not you who are the useless daughter it is the situation which is hopeless.

Whatever he says your dad is now at risk. I have no idea of the answer because there is no answer which will please everyone.

Your dad would be safe in a home. He might not be happy, but is he happy now? There is also the possibility he might be happier in a home if he had company, no responsibility and 24/7 care, but how do you find out?

So I`m afraid you can only wait for a crisis and leave him be, or go over his head and see if someone can help you and advise you what are the best next steps to take.

Why don`t you contact the Helpline? There are trained advisers who might be able to make more constructive suggestions.

http://www.alzheimers.org.uk/helpline

0845 300 0336 8.30am to 6.30pm Monday to Friday.

 

[Izzy]

Hi Linda - you are certainly not like your username. You are doing your very best to care for your dad in a very difficult situation. I really don't know what to advise. Does your dad have a social worker or any carers who come in? I know it's hard as many people won't have anyone else involved. Sorry. Not much help just wanted you to know I understand. x

 

[PostTenebrasLux]

Oh Linda,

Your thread is so beautifully and well written - it is so vivid and illustrates what no doubt many experience at one time or another. The frustration, anger, upset, worry and emotional pain of it all. I particularly like how you expressed the atmosphere between you and your husband - no doubt many will identify with your relationship and the dilemmas.

I have no advice but am sending you encouragement and support. May you get some guidance and constructive help fast.

Best wishes,

Martina

 

[DeborahBlythe]

Dear Linda, nothing you have said makes me think anything of the sort about you. You are far from useless, however you are stuck between a rock and a hard place at the moment and I think there are a couple of things you might try, to get things improved for your dad.

I would contact his GP and tell him/her how worried you are about your dad's wandering. I would also make some contact with the Social Services in your father's area and let them know that you think your father is at risk and needs some support. Can they help? You don't need anyone's consent to approach these professionals.

I know you are worried about your MIL too, but at the risk of sounding harsh, your husband and his family have got to sort that particular conundrum out themselves for the time being, assuming that there is a problem in that direction. You can't be everywhere and putting on a good front for everyone and right at the minute, your dad's needs are looking more dodgy than anything/anybody else/s.

This situation, with your dad, is not going to go away. It is not going to suddenly reverse and your dad return to his former capable self. He is vulnerable and right at the moment, something solid needs to happen to help him. Either a care package at home or residential care of some sort. I'm sorry that your husband is feeling miffed. This is no time to be miffed. You are under a lot of strain and it would be nice if he could give you some support.

Sorry to be blunt.

 

[Jo1958]

Linda, hi
Oh I do feel for you, well all of you in this awful situation.
Could your brother have a look around locally and see if there are any homes that would be suitable for your dad, just thinking about a fortnight's respite, a holiday to see if he does actually enjoy, as Grannie G says, the company, safety and activities.
I dislike the idea of waiting for a crisis but it is often the case that that is what it takes, I am so sorry that it is taking such a toll on you all.
Kind regards, Jo

 

[janice1]

very sheltered accomadation

Hi, we are at the same point with mum, she is vulnerable in her own home, we are looking into very sheltered accomadation, she would have her own flat in a purpose built complex. There are staff to monitor her, and provide the support and care that she needs. She would have her own kitchen, but there are cooked meals if she wants them. We feel that mum would be safer there. Perhaps its something you could look into, a social worker needs to do an assesment and the referel. Hope this helps, ps you are the most useful daughter Take Care Janice xx

 

[turbo]

Hello Linda, I really feel for you. It is so hard trying to keep everyone happy. My situation with my mum (now in a care home) was very similar to yours with your dad.
The constant worry is awful. It does sound as if you have tried to keep your dad at home for as long as possible but I do think you need to think of residential care. I do understand how difficult all of this is for you.

Turbo

 

[Jancis]

Hello Linda,
I am so sorry you are in this awful situation and it is affecting everyone in your family. You are doing the best thing right now which is to unload all your emotion on TP. I agree with everyone who has posted. I cannot offer any more advice I am afraid but thought I would tell you how my relative was exactly like your dad. It's not a very happy story either. My uncle lives too far away from us for us to visit regularly and although there were some signs that he was becoming forgetful and confused we had no idea how ill he was until it was too late to help him. The carer looking after him didn't want to "bother us" by telling us about his delusions and escapades and he was in denial anyway and would never have admitted his problems. To cut a long story short he had a massive breakdown and tried to commit suicide. Fortunately he was found before he could be run over by a car! He was sectioned because he became violent when the paramedic suggested he needed help. It has gone downhill from there and even though he was eventually discharged from hospital and thought well enough to return to his home (with carers three times a day and CPN and SS all calling on him too) he would/could not come to terms with his vulnerability and confusion. We tried every which way to help him and he stayed with us for a long period of time and seemed to get better. He had to go home to be reassessed and within 2 weeks he was found wandering only half dressed with no shoes in a very remote place - goodness knows what would have happened if a member of the public had not spotted him when walking his dog. The police were called and he was detained in a cell because of his violent and aggressive behavoir before they sectioned him again. Now he is in a nursing home and is very unhappy but at least he is safe. At least you and your brother are aware of your dad's problem - you can only turn to the professionals now and make them aware of his vulnerability. I am sure they will help you.

 

[susan jane]

Hi Linda having just read your thread and to a certain extent it is like history repeating itself. My mum started wandering the streets, once a lady found mum just about to walk down the slip road onto the dual carriageway about a mile away from her home - the police brought her home. Another time she visited the social club where she used to go with my dad but he passed away 11 years ago. We then had to take the awful decision of "locking her in her own home" I know this sounds cruel. In effect we took away her keys for the front door but left the patio door open so she has access to her back garden and we locked the side gate so she could not go any further than her garden. This was a very difficult decision to make and was not taken lightly, but it was helped that our GP and social services agreed it was the best decision to take because my mum point blank refused to go into a home and like your dad accused me to wanting her to go in a home so I could sell her house and have her money! I am sure you know how painful that accusation is. Anyway this has worked for us at first we had real problems when we left having to make up excuses about locking the door for her to save her the trouble etc. She would query where her key was and again more excuses. Now as her dementia worsens she does not question the locked door at all and I am now sure we made the right decision because I have lost count of the sleepless nights we had just waiting for the phone to go waiting - the police saying she had been found wandering. This may not be the right decision for you with your dad and it may seem cruel or harsh but it worked for us and when you are desperate you do what is right for your own personal circumstances.

Take care Susan

 

[piedwarbler]

Oh Linda, you are not useless, you are in a hard place, my mum was the same. I understand why it causes tension in the family and you seem to be trying to hold it together really successfully even tho it doesn't feel like it. Take care x

 

[larivy]

hi Linda i think everyone before more has covered everything just wanted to say your not useless larivy

 

[uselessdaughter]

Thanks everyone

Thank you all for your support. It means so much. I do talk to friends but none of them have, fortunately, experienced the same with their parents. I have one whose mother wanted to go into a home and be looked after and another who has a very able stepfather who looks after her mum. There are only so many times you can burden friends who mean well but don’t really understand all the implications.

Sylvia – No, Dad is not happy at home but tells me he might as well be dead if he has to go ‘into a home’. I will try and get in touch with the helpline but I don’t know how I would actually get him to go anywhere.

Izzy – He does have carers in twice a day and has meals on wheels everyday, although he complains bitterly when the bill comes in about how much it all costs. (In a way I can understand it. He is 92 and still paying tax!). Hopefully this will stop when the POA comes through on his bank and my brother and I can sign cheques without him seeing the bills!

Deborah – I have spoken to Dad’s GP who has also spoken to Dad about his situation. He is of the opinion that unfortunately Dad is one of those cases who will not be budged until something happens.
Social Services are involved although it took me over a year to manage this. They are of the opinion that Dad still has the capacity to decide where he lives.

It is not a case of being worried about my MIL as she, luckily, is mostly in good health. It is just that when we visit for a weekend we spend at least a day and a half at Dad’s cooking, cleaning, helping my brother keep up with the garden and with general maintenance that MIL is lucky if she gets a couple of hours. Keith sometimes goes and sees her for a couple of hours on the Saturday evening and tries to catch up with old friends who I now never get to see. The trouble is I/we have been putting Dad first for the last 6 or 7 years and my MIL like the rest of us is not getting any younger and deserves to have some time spent with her. She has been like a Mum to me since my Mum died and I like being with her. We have not spent a Christmas with her for 7 years and Keith has decided that come what may this year we are spending it with her. But that’s another story (and something else to worry about even though I agree with him). Keith has given me and Dad a lot of support over the years which has meant his own Mum has missed out.

Jo – Yes we have identified two homes locally that seem very nice. I have a friend who works at one of them. However, we cannot persuade Dad to go for just two weeks to see how he gets on. Personally, if I lived his life I would be there with my suitcase banging on the door to be let in.

Janice - Tried the sheltered accommodation route before he was as bad as her is now. Found two very nice places within 10 minutes drive of me, one with flats and one with bungalows Took him to see them. He would not even go in and look.

Thanks everyone else for you support and letting me unload but I must go into work now.

Linda

 

[susana53]

I'm not sure if this will help, but why not suggest he goes to a "hotel" for a short holiday, obviously meaning a care home? You could even pretend that you are going too, by taking a suitcase. If it isn't too far from home you could take a detour and have a drive around to make it seem further away. You say that sometimes he doesn't know if he's at home or at yours, so after a while he'll hopefully settle into a routine.
We had to do this with a friend and it worked on more than one occasion.

 

[Lesley 54321]

My brother and I were in exactly the same position as you with our mother. She denied all diagnosis despite a stepped deterioration over 3 / 4 years that included leaving gas on, wandering in her nightdress, leaving her door open, losing her keys and offering strangers to help her get things we had provided consistently for months. Whatever systems, gadgets etc we put in place something else would come up and it was a huge burden of worry for us, as it is for you. I am constantly struck by how complex dementia is for the carers with your loved one there in the flesh but with an ever shifting grasp of reality.

You are not useless, you are living and facing up to an incredibly difficult situation. But face it you must and so earlier this summer we had my mother assessed by the social services and we moved her to a care home three weeks ago. It has been the most difficult thing I have ever had to do with big issues of whether we were doing the right thing. What I am absolutely sure of is that if we hadn't done something my mother would have been at enormous risk and it was only a matter of time before something serious happened to her. I felt it was failing my care of her by letting her insist on staying at home when she had no idea of how vunerable she was.

I found the best way for me to deal with the situation was to get as much information I could, visit care homes etc, get financial advice, talk to the GP and social services and ensure you have power of attorney. It will seem less bad when you know the options and I would recommend making a joint decision with your family. I'm sorry if it sounds tough but sometimes you have to draw a line and say 'enough is enough' and I wish you the very best of luck with the months ahead.

 

[wispa]

Social Services are involved although it took me over a year to manage this. They are of the opinion that Dad still has the capacity to decide where he lives.

I was at the same point with my Mum 3 months ago. Social Services and the CPN/Mental Health Team both held the veiw that she still had the capacity to decide where to live and that it was 'crisis' management. In other words they were waiting for her to have a 'serious' mishap for them to act as she was refusing to go into a care home .

At this point, she had set fire to her kitchen, had been found attempting to go to the corner shops in the middle of the night, was dismantling electrical appliances in an attempt to 'repair them', (we found several plugs in bits and pieces and incorectly wired), had switched her mains electric off and sat in the dark for 24hrs with no knowledge of why the electric was not working, was not sleeping in her bed but dozing upright in the one chair that still had room to sit on (amidst the increasing piles of junk she was accumulating), was not eating and losing weight.......the list was endless and I was finding it hard to think of what 'crisis' they were waiting for!!

The crunch came when she would no longer let me in her house..... I then wrote a letter to her consultant to highlight what she had been up to and basically stated that she was 'vulnerable' and 'at risk' and that I could no longer keep a check on her welfare becuase she had totally disowned me and would not allow me into her house. I informed them that her safety and wellbeing was now completely in their hands.

This unsurprisingly instigated a personal visit to my Mums home from her consultant, after speaking to my Mum and looking at how she she was living he contacted my Mum's GP who then also visited her independantly.

They then informed me that my Mum's GP, the Consultant and a Social Worker would visit my Mum with a view to asking her to stay for a while with them at a mental assessment unit (voluntarily!), but they also asked if I would have any objection to them sectioning my Mum if they felt it necessary. I was told for this to happen I had to agree to it and that my Mums GP, the Consultant and the Social Worker also all had to be in agreement with the decision.

You can guess the rest....My Mum refused to go voluntarily, she was then Sectioned, read her rights and told that she had no choice but to go! - An ambulance and a police car turned up to take her (because she had refused!) and at which point she announced that she would go in the police car but not in the ambulance !!!

After 28 days the decision from the assessment was that she was unsafe to return home and after two months on the assessment unit (a month of which was voluntarily!!!), she finally went into a care home two weeks ago.

From my experience the assessment unit was not as terrible as I expected and my Mum seemed to improve for having a good regular nights sleep, three meals a day and no daily stresses of life and money.

I can't say it is easy at the moment, as my Mum has been quite agitated in the last few days and is asking frequently to go home, but when I think back to her distressed state a few months ago it is not a patch on that.

I remember vividly one 'poster' who TP who said that she always regretted not pushing for her Mum to go into a home because the outcome was very sad and traumatic, although the lady conerned did not go into detail I can only imagine what the outcome had been.

For all my Mum's wanting to go 'home', which incidently is not 'home' where she used to live but a 'different' house, it really is not as stressful for her as when she was at home and ultimately she is now obviously safe, warm, fed and cared for 24 hours a day.

Three months ago I would not have imagined my Mum in a Care Home and now here we are !!! - So as despairing as it seems for you now, if you really, really, really feel that a Care Home is what your Dad needs then maybe a few letters to the right people may just do the trick!

Take Care and take it easy on yourself, none of us are superhuman even if it does take superhuman powers to cope with dementia!

XXX

 

[Sundance]

Dear Linda
I do not think you are a useless daughter you seem a very patient and caring one to me, I have just read your thread with great interest, I have always been adamant that no matter whatever happens to me in my life time am I ever going to be put into a nursing home! That was before I was told I have a problem and after reading your and many other posts about what you all go through I am seriously considering sitting down with my family and talking to them about it now. I know and hope it’s going to be some years before I get really bad but I think your post has truly enlightened me to what you and many others are going through. Many years ago I worked in a nursing home and I guess it was easy for me to cope with all the residents who had any kind of dementia then because it was my job to do so. (I loved my job) But now I read the heartache it brings to so many of you, I know we don’t mean to and that is just the disease but I don’t want to put my family through it. Thank you for your post you have opened my eyes, blessings to you and your family x

 

[Grannie G]

Wispa, you have written such a helpful post and I agree with every word.

No one wants to be responsible for putting someone they love into residential care, but there does come a time, when the person is at risk, when there is no alternative.

Even living with someone 24/7 does not prevent such a decision having to be made, especially when restlessness, agitation and delusions are daily occurances and all reasoning fails.

Sundance , I take my hat off to you. You are both courageous and unselfish. I hope it is a long, long time before such a painful decision has to be made on your behalf.

 

[uselessdaughter]

Dear Sundance

Thank you so much for your reply and I am so sorry that you have a problem.

I think many of us (myself included) tend to forget that those who actually have the problems also read these threads and it must be so hard to read them. In an ideal world none of us would wish to end our days in a home of any kind, but then in an ideal world we would not have any of these awful diseases.

If we lived in a property where Dad could have his own living room then maybe we could manage to have him live with us for a while but I just know it would not work with the three of us having to share the same living space 24/7. I know Dad cannot help the constant repetition (if I thought he could I would probably be in prison by now!!) but knowing that does not help when you are dealing with it all day, every day. The longest I have done it for was three weeks and at the end of that time I was totally exhausted. As you have said, those who care for our loved ones in homes do get to go home at the end of their shift.

My husband and I have discussed this and we have both promised each other that if either one of us should become ill, when the other feels they can no longer cope, we will find somewhere with appropriate care without guilt (if that is ever possible). We do not have any children so the same situation would not arise.

As Sylvia has said you are truly courageous and I too hope that it is many, many years before any such decisions have to be taken. Let’s hope and pray that more effective treatments are discovered soon.

God bless

Linda

 

[LEEANN4832]

have you looked into any day centres were your dad can got for a few hours to socialise with others suffering from this dreadfull illness or any home care whome come to the house and make sure he has a fell meal do his washing surely there is more help ask your gp surely they can help...failing that look up the alzheimers society keep me posted x