Does anyone else dread visiting a parent?

[Chemmy]

Anyway, it's hard to get on with my life sometimes, I keep thinking about how long I've got until dementia strikes me too, does anyone else battle with this? Sometimes life feels like killing time knowing the real me will decay into a shadow of the person I've spent half a century being, and what the heck will it do to my kids? What a vile disease this is. Any tips for dispelling this existential crisis, or solving the Guilt: Dread situation?!

I can relate to that. I have been having frank discussions with my daughter (and to a lesser extent with my son) for some years now about the various problems that have arisen as their grandparents' health declined and have tried to express what I would want for myself and for them should we find ourselves in a similar situation in the future.

My parents were open in a similar way with me as I was growing up, and that meant I could make very difficult decisions about their care guilt-free, because I knew I was doing it with their unspoken blessing. When I read some of the heartfelt posts on TP about carers struggling on, consumed with guilt, I thank my parents for their foresight.

So what I would say to anyone is don't bury your head in the sand. We happily make arrangements for our finances for when we age with our pensions and wills, but often don't even consider discussing any future health and welfare plans.

Never mind inheritance, peace of mind could be one of the best gifts you ever give to your children.

 

[Pear trees]

I am glad I am not alone in dreading visits. Since I found my mum unconscious on the floor following a bac UTI I have found it increasingly difficult to visit her. She now has carers 3 times a day which she has grudgingly had to accept, but it took a while. We even had to change the lock so she could not lock them out! But she is always nice to the food delivery man!
Yesterday I was going to visit, got to the end of her road, parked up, then drove away. I simply could not face even 10 minutes of her nastiness and moaning. Her carers would tell me if there was a problem, and my SIL visits daily (I have to pay her to do it). Mum made it very clear last visit in August she did not want to see me ever again, so I am only doing what she wants.

 

[Meppershall]

I can relate to all of you not wanting to visit a parent. My Dad has LBD and seems to be progressing quite rapidly, but I can't feel sympathy, just frustration and a sense of feeling trapped because I can't get out of this situation. My brother refuses to help me and I currently have to visit two times a day for medication purposes. I resent the visits, I've never really got on with my dad and this situation has not bought us any closer but forced ua further apart. I hate sitting in his living room watching some rubbish on the TV, and listening to him constantly moaning, or sulking and not talking at all - that I find really hard to deal with. I've taken the time to visit and you can't even be bothered to talk to me ? I do not believe his attitude can be blamed entirely on this disease, he has always been a selfish man. He hasn't offered me a cup of tea in three years ! Until the inevitable (care home or passing away), I see no way out of this and I've no way of finding a partner and any kind of lasting happiness while I am so tired and grumpy - who wants to take someone on with this kind of stress and baggage ? We struggle on because we have to but it's a massive pain in the a**e !

This is a brilliant place for getting things off your chest !! lol

 

[Unasmum]

Reading these posts has been a comfort. I too have always had a difficult relationship with my Mum (when I divorced my abusive husband she disinherited me for disgracing the family name). I now care for her out of duty and guilt. On a good day she is rude, on a bad day she is vicious. I live close by, so it is easy for me to get to her and she expects daily visits. If I don't go she will ring me and says she is very ill and needs soup, or some such excuse. She is not ill - just lonely. She has always been tactless and this has become worse with her dementia; even when she is being nice - to other people not me - she still manages to cause upset. As a result, she only has one friend who has any time for her and she visits infrequently. Last weekend my stepson came for lunch, she rang me during lunch demanding attention. I explained the situation and said I would be round asap. She rang me 4 more times whilst I was eating. Is it acceptable to walk out when she insults me or not to go round when she demands my attention? I have never walked out but I have manufactured an excuse not to go round however I feel very guilty doing this because one day she will be genuinely ill. It is making me ill, I don't want to wake up in the mornings.

 

[canary]

Is it acceptable to walk out when she insults me or not to go round when she demands my attention?

Yes, it is perfectly acceptable to walk out when she is vile to you, to delay going round to her when she demands it and also to not answer the phone at times and even to switch it off for periods. You do not have to be at her beck and call continuously.

 

[Unasmum]

Thank you canary for your advice. It makes me feel stronger.

 

[marionq]

As a mother of daughters it disturbs me when I read such painful posts. Parents have a lot to answer for when they behave so badly to their grown up children. I have a very long standing friendship with someone who is heading along this way by never praising her daughter and never satisfied with anything she does. The daughter has a demanding job and her own family but her mother seems to think she should have first call on her time.

Once again my advice is not to allow bullying even when the culprit is your own parent. Do what is necessary to make them safe but then put up an invisible wall and get on with your life.

 

[Baz22]

Thank you canary for your advice. It makes me feel stronger.

I agree with what canary said. I know we run round out of a weird sort of guilt but you need to start taking back control of the situation. Marianq pointed out you need to "get on with your life" and this is right. As you know she is mainly crying wolf, follow the advice given about not always answering the phone, going round when you choose etc. Remember your life and health is important as well. Can only wish you good luck.

 

[MothersCarer]

I do feel for you Pear Trees. My mother had been described as determined, strong-willed and many other things by her carers and they are rarely on the end of her sharp tongue. I do try very hard to think how I would feel in her position but that has usually been when I am driving home in tears. I have a feeling that this will be easier now she is in a home and I can feel a large portion of the responsibility and worry lifting.

I know we cannot do anything about it, and that we would probably all want to stay at home as we can, but I am really beginning to think that isolation in the home with three or possibly four visits a day becomes a very bad solution long before our PWDs move to a care home. Up to that point it is their nearest - and possibly dearest but possibly not - who bear the brunt of the responsibility and the fight to get them what they need.

 

[ChloeE]

I wanted to add a word of hope.

Before my mother's dementia I had a very difficult relationship with her. After her stroke, her behaviour became even worse. My father spent his final years caring for her and, when he died, she was callous and brutal in her comments about him. (As an example, a week after he died she insisted on telling me about the size of his penis and ranking it relation to all her other lovers).

So I was entirely alone in my grief for my father and stuck with the sole responsibility of caring for a person I did not like, who happened to be my mother. But I did my "duty" out of love of my father and because I had no choice. It was explained to me that, with dementia, a person's personality traits can become exaggerated and my mother's innate narcissism was now uncontained and corrosive.

Now the hope.

When things became unbearable I stayed away from my Mum for a month. Perhaps it was a coincidence but, after that time, my Mum stopped treating me like an emotional punching bag. Perhaps she realised that I was capable of abandoning her and therefore was more careful, but I also think that my behaviour towards her changed after I took a break. I left my anger and anxiety outside the door and was much calmer in my dealings with her. I started deliberately creating a new relationship with the person she was becoming.

As my mother's condition has deteriorated (and her medication increased) her behaviour has changed for the better. She has become a frail, demented, but rather sweet old lady. It is easy to love her. Having been offensive in her dislike of my father, having told me of the many affairs she had while they were married, she now has only lovely things to say about my Dad and denies ever having been unfaithful (and has forgotten his multiple infidelities also). She has entirely reinvented her past and talks all the time about what a wonderful man my father was. It makes me so very happy to hear this and, as she talks I can almost feel my wounds healing. She constantly tells me how much she loved my father (which I had never heard before) and how much she loves me (also something I had not heard before).

So now finally, amidst the horror of the my mother's multiple diseases, I also see "reality" somewhat differently. Whether my mother loved or hated my father, was serially promiscuous or totally faithful, doesn't really matter any more. Whatever her behaviours in the past there is something new and good emerging and I have been granted a chance to make my peace with her.

I know dementia can take many different courses and many people who loved their mother's have to deal with the horror of a new and unpleasant person emerging. But it doesn't always happen this way and, just maybe, you will be granted glimpses of someone who is more easy to love.

Good luck.

 

[marionq]

@ChloeE that is a lovely post. Thank you.

 

[Baz22]

I wanted to add a word of hope.

Before my mother's dementia I had a very difficult relationship with her. After her stroke, her behaviour became even worse. My father spent his final years caring for her and, when he died, she was callous and brutal in her comments about him. (As an example, a week after he died she insisted on telling me about the size of his penis and ranking it relation to all her other lovers).

So I was entirely alone in my grief for my father and stuck with the sole responsibility of caring for a person I did not like, who happened to be my mother. But I did my "duty" out of love of my father and because I had no choice. It was explained to me that, with dementia, a person's personality traits can become exaggerated and my mother's innate narcissism was now uncontained and corrosive.

Now the hope.

When things became unbearable I stayed away from my Mum for a month. Perhaps it was a coincidence but, after that time, my Mum stopped treating me like an emotional punching bag. Perhaps she realised that I was capable of abandoning her and therefore was more careful, but I also think that my behaviour towards her changed after I took a break. I left my anger and anxiety outside the door and was much calmer in my dealings with her. I started deliberately creating a new relationship with the person she was becoming.

As my mother's condition has deteriorated (and her medication increased) her behaviour has changed for the better. She has become a frail, demented, but rather sweet old lady. It is easy to love her. Having been offensive in her dislike of my father, having told me of the many affairs she had while they were married, she now has only lovely things to say about my Dad and denies ever having been unfaithful (and has forgotten his multiple infidelities also). She has entirely reinvented her past and talks all the time about what a wonderful man my father was. It makes me so very happy to hear this and, as she talks I can almost feel my wounds healing. She constantly tells me how much she loved my father (which I had never heard before) and how much she loves me (also something I had not heard before).

So now finally, amidst the horror of the my mother's multiple diseases, I also see "reality" somewhat differently. Whether my mother loved or hated my father, was serially promiscuous or totally faithful, doesn't really matter any more. Whatever her behaviours in the past there is something new and good emerging and I have been granted a chance to make my peace with her.

I know dementia can take many different courses and many people who loved their mother's have to deal with the horror of a new and unpleasant person emerging. But it doesn't always happen this way and, just maybe, you will be granted glimpses of someone who is more easy to love.

Good luck.

@ChloeE Thank you for sharing that experience. It was uplifting and helpful

 

[Hedgepig]

"yes" to all that you have said Pear Trees!

Just occasionally on this forum I see a sentence, which really resonates with me. Today, Quilty, I award you the Prize!

I second that!

 

[canary]

Oh dear, I remember this stage @Savannah
Your mums world is shrinking and she can only see her own needs, wants and comforts. It is nothing to do with you doing more for her - you are only chasing after the dementia. Dementia will take everything that you give to it and still want more. I dont know whether it would be a comfort to you to say that if you didnt do these things for your mum she would not do them herself as she has probably forgotten what to do or to be unable to initialise tasks.

I honestly think you should start looking at care homes. They are not all bad and you want to get her name down on the waiting lists of a couple that you like rather than waiting for the inevitible crisis and her ending up wherever there is a room.

The report released last week about a majority of those who die in care homes have malnutrition, dehydration and bed sores detailed on their autopsy reports really upsets me,

Um, I can see where that has come from - it has been witten by someone who knows very little of dementia. When someone is dying from dementia the body starts shutting down very slowly - the immune system stops working (so they get infections and sores that are difficult to heal) and they are no longer able to process food and fluid. My mum did not eat or drink anything for 17 days before she passed away, but it was not because it was being witheld from her - she stopped eating and drinking because her body could not process it.
Please ignore such scaremongering and go and find a nice homely care home with good good compassionate carers.

 

[Spamar]

Most people with dementia can get nasty to the one who is doing most for them. Everybody else is fine! You have to ignore it, do things on your terms and not hers. Dont get worked up, if your health fails, what then?

Yes, people in care homes have malnutrition, pressure sores etc. So do people at home, but they are rarely mentioned. Don’t believe all you read. But when it comes to choosing a care home, some are better than others. Look for one that doesn’t smell of wee, but has a caring atmosphere. Don’t go for all the bells and whistles, how many elderly can watch a film and understand it?

Take a deep breath, decide which battles you’re use going to fight ( no use wasting energy on ones that don’t really matter), have a look at care homes.
Good luck!

 

[KateAAPS]

Dreading the visit, dreading the phone calls, yes, all of those. Pretty much every post I recognise similarities and hope things can get better. Things were working really well. I was calling by 3 or 4 times a week, with shopping and just making sure that all was OK. When I first started doing all the shopping, it was almost like Christmas with a Mum excited to see what I had bought. I bought a halogen oven as Mum would frequently put things on / in the cooker and then forget and they would burn. She loved this and the ability to easily select a temperature and time as I labelled all food with cooking instructions. Also buying food with the longest possible shelf life and again labelling use by dates. I then noticed a change. The more I cleaned the more there was to clean. Third parties began mentioning things to me like seeing Mum out in the garden in the nice weather and having eaten her sandwiches and drink, and when the simple comment, 'don't forget your plate and mug' that the reply was 'oh, I don't have to do that anymore as my daughter does all that for me'. And this was true as I would frequently spot mugs and plates all over the place and have to retrieve them. But that's also when the nastiness seemed to start. I'd had offered to take her out and would get there and just not be able to go until I made sure things were at least clean and hygienic. You then start to question by trying to care whether in fact you are the one that has released this demon. She does little now but sit and get herself worked up over things and being nasty. When you work full time and as I do, more than 9-5 hours, there just isn't time in the day. My housework would suffer. While her finances became a priority, my own would fall by the wayside as well as my own diet as just not enough time to do a proper meal for myself. Everything that is bad about her life (which is everything as she doesn't seem to get pleasure from anything nowadays) appears to be my fault. I was feeling very run down but was determined to do everything I could. The final ignition to her hatred was a little over a month ago when I went down with that nasty bug that is doing the rounds. Not quite flu, but for three days, could barely shift myself from the bed or the sofa. I phoned Mum to say that I couldn't do her shopping and therefore we needed to come up with an alternative: I arrange a taxi, my brother helps out (who lives equi distance to myself) or I arrange a home delivery. She shouted abuse at me. I was lying, I wasn't ill (although everyone else I had spoken to on phone had immediately said 'you sound awful') and it was just that I didn't want to help her anymore. I was selfish and that was because I had never had children, was selfish, etc, etc. My Dad has been dead for almost 10 years and I have been the one throughout that time who has given up n a social life to make sure I visited her every week, I have always had her for Christmas. I so wanted to be able to enable her to stay in the home she has been in for about 40 years. The last time I saw her I had to leave quickly as her anger was so great that I was convinced she was going to hit me. I am certain her condition is worse as a recent blood test has shown concerns over blood sugar and she isn't complying with her meds, but the GP and Social Services have been very slow to react to my concerns. It doesn't matter what evidence is put in front of her to show that I haven't stolen her car or her money (in fact I was the person who drove the claim for Attendance Allowance and her no longer having to pay Council Tax). I have also got money back for her from 'scammers' and 'rogue traders' to the tune of thousands of pounds. I try to ignore all of this, knowing that I have sacrificed so much and been the only one who has really actively helped her, but it does become all consuming, hanging over you like a heavy cloud and even in sleep, I can have some really horrible dreams. The report released last week about a majority of those who die in care homes have malnutrition, dehydration and bed sores detailed on their autopsy reports really upsets me, along with the reports of the staff shortages within the NHS and the social care sectors. Knowing also that things will get worse also doesn't help and although you try to be ahead of the game, you can still end up shocked by what happens. It certainly does help knowing that others are around and even if the answers are not there, that you gain support, advice and virtual hugs.

 

[Kariwan59]

I use dread visiting my dad as he was having problems, found out he had dementia, I finally got him into a lovely residential home near me. I am there most days and should really as I am a full time student and work for the nhs as a cook. But poor daddy is ill and if I could spend every minute with him I would. Our parents won’t live forever and I lost my to cancer 7 years ago? Then two years later got the same cancer. I have lost many family members and it’s so sad but my gentle strong man is dissapeari g before my eyes, so every minute is precious while I have him, I am giving back to him what he gave me all my life unconditional love.

 

[Unasmum]

I haven't posted for a while but I am really struggling at the moment. My mother has a real obsession with her money, she cannot manage it as is shown by her daily demands for large sums of cash from me. I manage her money under an LPA. When I took over the management of her money , over 12 months ago, we agreed how it was going to work and I wrote it down for her. I copy her monthly bank statements for my records, and give her the originals but she still claims not to know how much she has in the bank. She really doesn't know the value of money any more. She has phoned me at least 10 times today asking for money for Christmas presents. We did her Christmas shopping yesterday and wrapped them together, we had quite a good time. The wrapped presents are sitting in her dining room in plain sight and I wrote a list of the presents we had bought for each person on her list, which I had already written. She has completely forgotten.
As a bit of background my eldest has recently separated from her abusive partner, I am extremely worried for her continued safety, and my granddaughter's, as she has had to take a Non Molestation order out against him. I have been to court to support her and am providing childcare at weekends, a 3 hour round trip. My youngest is newly pregnant, having tried to conceive for many years, she is suffering from hyperemesis and I worry about her too. I am visiting her during the week a 2 hour round trip, to provide her with support.
My health is now suffering, I am only sleeping fitfully for about 2 hours a night , I am not eating properly and drinking too much, as I can't relax. I cry so easily and fly off the handle. I am beside myself with worry and stress. I need a break from my mother to concentrate on my daughter's for a while but I can't get away from her.

 

[TNJJ]

I haven't posted for a while but I am really struggling at the moment. My mother has a real obsession with her money, she cannot manage it as is shown by her daily demands for large sums of cash from me. I manage her money under an LPA. When I took over the management of her money , over 12 months ago, we agreed how it was going to work and I wrote it down for her. I copy her monthly bank statements for my records, and give her the originals but she still claims not to know how much she has in the bank. She really doesn't know the value of money any more. She has phoned me at least 10 times today asking for money for Christmas presents. We did her Christmas shopping yesterday and wrapped them together, we had quite a good time. The wrapped presents are sitting in her dining room in plain sight and I wrote a list of the presents we had bought for each person on her list, which I had already written. She has completely forgotten.
As a bit of background my eldest has recently separated from her abusive partner, I am extremely worried for her continued safety, and my granddaughter's, as she has had to take a Non Molestation order out against him. I have been to court to support her and am providing childcare at weekends, a 3 hour round trip. My youngest is newly pregnant, having tried to conceive for many years, she is suffering from hyperemesis and I worry about her too. I am visiting her during the week a 2 hour round trip, to provide her with support.
My health is now suffering, I am only sleeping fitfully for about 2 hours a night , I am not eating properly and drinking too much, as I can't relax. I cry so easily and fly off the handle. I am beside myself with worry and stress. I need a break from my mother to concentrate on my daughter's for a while but I can't get away from her.

Hi.My dad has VD and doesn’t understand a bank statement.
I also care for him out of duty and a little love.I also take on some guilt(no idea why as he was never particularly a good dad) I think it’s always to do with trying to get his approval.

He can be sarcastic and cruel and that has got worse with dementia.

Can you not get carers in for your mum??
Would she not “allow “it??
It is too much sometimes .All this responsibility of the PWD.
I have learnt to change my own limits to what I am prepared to do.I have given more responsibility to the carers and taken it off my shoulders.
Can you not share the load??

 

[Champers]

I haven't posted for a while but I am really struggling at the moment. My mother has a real obsession with her money, she cannot manage it as is shown by her daily demands for large sums of cash from me. I manage her money under an LPA. When I took over the management of her money , over 12 months ago, we agreed how it was going to work and I wrote it down for her. I copy her monthly bank statements for my records, and give her the originals but she still claims not to know how much she has in the bank. She really doesn't know the value of money any more. She has phoned me at least 10 times today asking for money for Christmas presents. We did her Christmas shopping yesterday and wrapped them together, we had quite a good time. The wrapped presents are sitting in her dining room in plain sight and I wrote a list of the presents we had bought for each person on her list, which I had already written. She has completely forgotten.
As a bit of background my eldest has recently separated from her abusive partner, I am extremely worried for her continued safety, and my granddaughter's, as she has had to take a Non Molestation order out against him. I have been to court to support her and am providing childcare at weekends, a 3 hour round trip. My youngest is newly pregnant, having tried to conceive for many years, she is suffering from hyperemesis and I worry about her too. I am visiting her during the week a 2 hour round trip, to provide her with support.
My health is now suffering, I am only sleeping fitfully for about 2 hours a night , I am not eating properly and drinking too much, as I can't relax. I cry so easily and fly off the handle. I am beside myself with worry and stress. I need a break from my mother to concentrate on my daughter's for a while but I can't get away from her.

Your experience with your mother’s money obsession is not too dissimilar to my mother’s fixation. To be honest, once she had lost the concept of actual value of money, and it sounds like yours has too, I stopped giving her cash. When she demanded or cried because she didn’t have any, I would tell her to leave it with me and I’ll get some when I’m next out. It seemed to appease her and she usually forgot - for a bit anyway. My husband went through a phase when he said that if she wants cash, she must have some, but that didn’t work as Mother would put the money somewhere “safe”, forget where the “safe place” was and then ring me in hysterics as “someone” had stolen it. Its just so much easier to take total control - that’s what the LPA was for. Sadly, even with prompts like a list or actually seeing the presents, someone with dementia won’t always make the connection. What seems logical to us goes out of the window.

Money and bills seemed to cause more distress than almost anything else so, as you’ve got LPA, I would redirect everything financial to your own address. Even a bank statement used to start my mother off, so when she mentioned she hadn’t seen one for ages, I did the same excuse, how odd, leave it with me, I’ll chase the bank up etc etc. I took over every single bill included milkman, hairdresser etc. Most businesses are happy to accept a bank to bank transfer nowadays, which made life a lot easier. I’ve become a master of side stepping, distracting and redirecting the conversation if finance starts to raise its head.

I’m also guilty of not always taking my own advice, but you have to stand back a bit and get outside help. Your own physical health and mental well-being are just as important. Plus, your daughters need you too. You can only spread yourself so far before something gives. There are plenty of agencies out there that can help and one thing that I read always sticks in my mind, there is no law that says we have to look after our parents. I know we want to do it because we love them and there’s a sense of duty too but you don’t have to do it single handedly.

Take care of yourself and keep posting on here. I’ve found this forum an absolute goldmine of support and information. You are not alone, I promise. xxx[/QUOTE]