How do you handle and adjust to the early stages?

[Tragicuglyducky]

It has been 16 months since my dad was first diagnosed with mixed dementia. He is at the early stages and manages ok living independently.

What I struggle with is the menial stuff that happens a lot. Not knowing what day it is or time of the day. Misplaced keys, debit cards and bus passes. Multiple appointments to doctors, dentist, opticians, clinics and hospitals. He's ungrateful too - complains about the hassle if any appointment and thinks they're pointless because the doctors don't give him a magic pill to fix him. After 7 appointments to get some hearing aids he won't wear them. 5 appointments for dentures he doesn't wear. Can't even count the number of opticians appointments!

I'm really struggling physically and mentally to be his PA having to call him to remind him of something coming up or to remind him that something isn't happening - sometimes when my brother and I don't speak to him he'll decide that an appointment or event is going to happen and then he'll call in the evening asking where we are and shout at us because we should have reminded him that nothing is happening. I'm tired of sacrificing my days off or having to work extra hours to make up for time lost taking him to appointments. His numerous phone calls about problems, complaints or just to have a go at me are draining.

I'm 33 and I want to focus on my career and having a baby. My brother is in a similar position to me - newly wed, working a post doctorate job and working out his next career steps. We share the load but it doesn't feel physically possible for us to do more. We both also struggle because he was never a loving dad so very little to bond us to him. The age gap (52 years when he had me), culture gap and limited love leaves us uninspired to do more than what we need.

Every day I want him to die or I want to die, either option sounds good. If I feel like this at the early stages how am I going to cope when he's worse? How am I going to cope if I get the job I'm applying for tihat requires 4 hours of commuting each day? How do I cope if I have a baby?

 

[LadyA]

The short answer is, you are not, and you shouldn't! Not when you have a job, a home and (I assume) a family of your own that need you too. Maybe its time for your dad's needs to be reassessed, and some Care to be put in place. Maybe a day centre would occupy him, give him other interests and stimulation.

Personally, I think there comes a point when a person with dementia can't learn to cope with things like hearing aids and dentures, if they were not already used to them pre dementia. My own husband proved completely unable to cope with hearing aids, and never wore them. And eventually, I had to take his partial dentures away, as he was in danger of choking on them. He could cope with them. It can be very frustrating though, and I feel for you.

 

[Sam Luvit]

My mum is early stages & there are times I despair of making it to mid, never mind late stages

Take it a day at a time, one step at a time & try to accept you are parenting your parent. That's a hard one to get your head round. A lit if the time, I dint treat mum like my mum, but like an 82 year old toddler I'm looking out for

I do write appointments, dictionary, dentist, optician, hospital .... on the calendar, but I don't bother telling her. She either forgets or stresses. I just tell her the night before we have to be up early for an appointment, or we have an appointment this afternoon.

I plan times & what we need, then add at least 30 minutes & tell her to get her coat, go to the loo etc so we get there on time. The more you push, the slower they go, just like a child , so hold in the frustration & find a way of talking that you would use to a difficult child. It's the only thing that works.

Mum never knows what day it is, she told me it's my birthday tomorrow , err no it's not, I just said, no, not tomorrow & changed the subject. She has 3 wall calendars (madness, but she wants them), but the one nearest to where she normally sits, she crosses off the days so she has an idea of the day. She is forever asking me the date. Drives me nuts, but I grit my teeth & tell her.

You don't have to do this, you are allowed to live your life, new jobs, children, your life. As LadyA says, try looking at centres he might go to, call it a gossip club, or coffee morning or whatever you think he will accept. Ask SS for suggestions, ask for a referral for a befriended. Get all the help you can, ask now, the waiting lists are not short

There are many of us who didn't have that perfect childhood, who struggle with the guilt of not doing, but feel a duty to do. Your life is just as important as his, do what you feel you can, don't force yourself to do more & end up resentful of what you've given up.

Come on here & moan, it does help

 

[Lawson58]

If your dad is really capable of living independently - cooks, cleans, takes care of his daily hygiene etc, then I believe that there is a degree of manipulation going on by your dad.

Being manipulative is a fairly common symptom of dementia and can really cause huge problems if you let it control your life. I feel that being manipulative is a reflection of the insecurity that AD patients feel and then they resort to anything to feel in control again. And of course some people were a bit that way before they were diagnosed.

You and your brother are in the early stages of caring and it is going to get worse not better so now is the time to change things because you cannot go on as you are.

I can only suggest that you and your brother take a big step back and decide together that you are not going to let your dad bully you anymore. If he is abusive when he phones, hang up on him. It might take a bit of work but you need to get dad to arrange appointments to suit you, not just him. You might need to make the appointments for him but that would be better than what you are trying to juggle now. You could also opt out of taking him to the less important appointments and only take him to the essential ones. There seems little point in going to opticians, etc if they don't achieve anything.

One thing I have learned in the last few years is not to sweat the small stuff. You can't win every battle so choose those that you can live with. You and your brother are both at important times in your lives and if you sacrifice everything for your dad, given the relationship you have with him, then you will regret it. These are years you can't get back so you need to hang on to them for the sake of your own future.

 

[Duggies-girl]

It is so unfair. My dad is probably early stages and he is a lovely man but yes he is driving me mad with the endless same questions and not knowing what day it is. Sometimes I want to shout or just run away.

I am 61 now and feel that I should be reaping some rewards. Fat chance but he is my dad so I will plod on as long as I can.

You are young and have a life to live so do as someone else said and find some respite for yourself so you can get on with life or you will miss so much. If you want to have your own family then do so and don't feel guilty.

Nice that your brother is caring and helps, mine is not interested one bit. My dad lives in a village and if it were not for me he would be marooned. Mind you that is how I feel, marooned, unable to escape.

Stress can affect you mentally and physically and Your dad could go on for years like this so seek some help before you have a breakdown or something.

I hope things get easier for you.

 

[Amethyst59]

I agree that you should not feel the burden for all care should fall on you. Try to get that assessment. And a tip that might stop some of the phone calls...you can get a 'clock' that looks like an iPad screen. It shows the day and date in an easy to recognise form...and even has period of day (e.g. morning, evening).

 

[Amethyst59]

Sorry...I also meant to say, that I have bought a small white board. I list the next few days on there with a simple resume of what we are doing...including 'nothing' if there are no appointments. My OH finds that easier to read than a calendar. Maybe you could do this each few days when you are with your dad?

 

[Bunpoots]

Hello Tragicuglyducky

At the risk of sounding harsh. Your dad's lived his life, don't sacrifice yours to him.
I had to make this decision with my dad when he was at the stage your dad is now. He had no concept of me or my kids having a life which was outside his own. I got a lot of phone calls, inc a few at 4am!!

There is no easy solution. We tried lunch clubs and daycare but dad isn't the group activities type and I couldn't get him there if he couldn't get in the car. So eventually I decided to back off a bit and not go every day and, as Sam said, decide which appointments were really important. And he stopped expecting me to "entertain" him all the time. He was also fine on his own for a day. I still took him shopping and saw him every other day (my brother and sister don't help much, brother hardly at all).

As things have moved on I've managed to find a "housekeeper" to check on him twice a week and do a bit of cleaning and ironing and microwave a meal. I do the other days.

I suppose what I'm saying is decide what you can do, then what he can do and think about employing someone (your dad should pay) of he needs extra help. It doesn't need to be a carer at this stage, a cleaner or gardener or someone who knows the situation and can check he's ok.

Good luck. I know how demanding PWD can be at this stage.

 

[Rosettastone57]

Hi just wanted to say that I can empathize totally with your situation .My mother-in-law has mixed dementia and always has been a nasty controlling manipulative person all her life even before the official diagnosis. My husband and I and we have no one else to help us decided a long time ago that we wouldn't sacrifice our lives for the sake of my mother-in-law. As she is self funding we were able to put in carers very quickly who have been an absolute godsend in keeping us free to do what we want to do. She lives on her own in her own property and was always even before the dementia diagnosis trying to get my husband to spend as much time as possible round there. We kept her at arm's length by trying to encourage her to take part in day centres which in fact didn't work out. We organised a befriending service and a sitting service from the care agency to try and take her mind off constantly trying to get my husband to go round there.

This may sound harsh but in fact it's the only way that we can have our own lives without constantly having to deal with her issues . We organised hearing aids for her as she was very deaf and couldn't even hold a conversation on the telephone. She had a complete lack of initiative and couldn't even remember to try and put them in so eventually we had to put it on the care plan for the carers to put the hearing aids in every morning so far this seems to work quite well. She is completely unable to look at the list we provide every week of her various appointments, again this is part and parcel of the complete lack of initiative that persons with dementia unfortunately suffer with . I only remind her now about the most important appointments .

You are entitled to your own life and it sounds very much like our situation where there was very little love given to both my husband and his sister in the past . Yet now my mother-in-law expects us all to put up her needs first all times.

 

[Tragicuglyducky]

Thank you everyone for your kind words and understanding how crappy I feel! I was very ready this morning reading your comments but it gave me a little bit of energy! The suggestion about a white board is a very good idea and I think I'll give it a go!

The comments about manipulation is very interesting. While I know that he can be manipulative, he's more a guilt trip type manipulator, I don't think he's subtle about these things. But what I think is happening is the more he needs us the more I'm getting drawn into his every whim. I need to go back to a healthy dose of ignoring him.

I've had 6 phone calls in the last 2 days from him about his lost bus pass which he finds later only to lose again... my nerves are completely frayed and I'm very short with him. What isn't helping is the conversations with him these past few days have been hard to understand. He's very vague and has his words muddled, when I try to guess he doesn't understand me (a lot of repeating things over and over and louder and louder) and when I go along with what he's saying he questions what I'm saying. I know that he will have problems in articulating what he wants to say but if I say nothing we both get frustrated, if I guess I'm wrong, if I agree with him we're both confused. If I change the subject he either can't hear me or we go back to the previous conversation immediately. I struggled to converse with him before dementia - he's never once asked me about my day. i really don't know how to converse with him now. The guides that I've seen on here don't work and they are certainly not very good for someone like me who avoids small talk so much that I don't believe there's such thing as an awkward silence!

 

[Alibaba80]

I totally sympathise with you. My mum is in the process of being diagnosed but lives 180 miles away yet is just as manipulative and puts pressure on me to do things for her despite the distance. I have just finished sorting out my late fathers estate who died this summer despite her being the executor. She didn't do anything claiming that she didn't understand what to do. She also tried to get me to sort things out in the house for her. I recently arranged for her to have a room recarpeted and furniture delivered despite being so far away. Telephone conversations are impossible. She never asks me about my life, I don't think it occurs to her to ask and she repeats herself over and over or forgets what I say or ask mid conversation. Mum won't have anyone in to help so I end up doing. And now that she has been told she can't drive I am having to do a weekly online shopping order for her!
At 36 and with 2 small children I have my own life to deal with
Sorry, rant over!

 

[Louhelp1234]

So sorry to jump on this post but a lot of the things described are things I'm currently dealing with and I just wondered. Does it get any easier, can you find a balance of doing what you can, trying to get help for the things you can't and letting go of the guilt?

Mums 67 still awaiting diagnosis, had CT scan, scored 50 out of 100 on the Memory Test, struggles with most day to day things can't remember how to do tv, can't always use microwave, can't manage taking tablets etc. Get results on 2nd October, psychiatric nurse is no help but she did say to expect CT scan to confirm Althziemers or Vascular Dementia.

I'm really heartbroken, we were always so close but now we are so distant, she doesn't even look like the same person, she's lost so much weight she's unrecognisable.

The only equipment she seems to know how to use is her phone. She constantly rings me and my aunt from 5 in the morning, even through the night occasionally. Doesn't really want anything doesn't even seem to want to talk.
It's getting so stressful. Mum kept messing her tablets up, one week she took a weeks worth of tablets in 3 days. Psychiatric nurse said as I phone her every day to tell her when I phoned to take her tablets.
I agreed but to be honest it's not working. Mum seems to remember every day that I have to phone her. I've repeatedly told her not to worry I will remember to phone her but that doesn't stop her phoning me from the early hours to see if it's tablet time.
In the end the only way for me to get sleep was to put my phone on silent. I always phone her around 730am. But every day I have at least 6-7 missed calls from her. She seems to let it ring constantly, then it must cut off after a bit then re retries.
She struggles to work out when food is out of date. When I check she gets defensive and thinks I'm having a go, I'm not I just don't want her to get ill with food poisoning on top of everything else. Have to tell her to change her clothes as sometimes they are filthy, that goes down not well at all.
She lives alone, constantly looses things, lost her bank card the other day, couldn't remember if she had left it in a shop or gave it to someone. I rang the bank and cancelled the card.
Explained that a new card would be sent in the post and if she needed to buy something to take money out in her purse. She disappeared and returned with a quality tin full of money, no lid and though it was acceptable to just take this out. Checked her purse too and she had £300 in her purse, the purse that she's constantly loosing. Spoke to my aunt who's being a godsend through all this and she told me to take the money and keep it safe as mum clearly didn't know what to do with it.

I explained to mum I was taking it and keeping it safe, coz if she lost the money like she did the bank card it would be gone forever. But now she thinks I've stolen it. I haven't I would never steal of my mum, the mum I had knows this. But now she's constantly phoning me to say why have you got my money I want it back you have no right. I keep explaining I'm just looking after it and that she doesn't need it at the moment as here bank card has arrived and it's safer to use that.
She has no concept of paying bills, or opening letters, luckily most are direct debit, but opened letter the other day from gas/electric she hadn't paid the bill, hadn't even opened the letter, I said why haven't you paid, she said I haven't got any money in my bank she has, I paid it I rang using mums card so at least she won't get cut off.

The thing is I'm at a loss of what to do.

Mum lives alone, obviously needs help.
But I run my own business work 6 days a week 12 hours most days. I can't take time off at the drop of a hat, I need the money. Also I have two teenage children and a family/house to look after, and as selfish as it sounds I have my own problems.
I seem mum twice a week, take her food shopping and phone her every day. But as much as I'd like to I can't do anymore. The guilt eats me up but also I know this sounds harsh I don't want to be mums carer.
I'm constantly distracted though, if it's not mum phoning constantly I'm worrying is she ok. I'm making so many work mistakes I feel constantly on edge and sad. Not sleeping properly, mum is the first thing I think about when I wake up and the last thing I think about when I go to sleep.
My daughter has said she worries about me as I don't look well, and am so upset and distant all the time. She says she can't remember the last time I was happy, neither can I.
Just not sure how long I can go on like this.
Decided to phone next week after diagnosis and see if social services can assess her but that makes me feel bad, mum will hate me for it. But she needs so much more than I can give, even though it makes me feel like the worse daughter in the world.

But I can't go on like this at this rate I will be ill.

Any advice would be much appreciated.

Sorry for such a long post and jumping on your post.

Big hugs and lots of love to everyone out there struggling xxx

 

[Fwightman]

It has been 16 months since my dad was first diagnosed with mixed dementia. He is at the early stages and manages ok living independently.

What I struggle with is the menial stuff that happens a lot. Not knowing what day it is or time of the day. Misplaced keys, debit cards and bus passes. Multiple appointments to doctors, dentist, opticians, clinics and hospitals. He's ungrateful too - complains about the hassle if any appointment and thinks they're pointless because the doctors don't give him a magic pill to fix him. After 7 appointments to get some hearing aids he won't wear them. 5 appointments for dentures he doesn't wear. Can't even count the number of opticians appointments!

I'm really struggling physically and mentally to be his PA having to call him to remind him of something coming up or to remind him that something isn't happening - sometimes when my brother and I don't speak to him he'll decide that an appointment or event is going to happen and then he'll call in the evening asking where we are and shout at us because we should have reminded him that nothing is happening. I'm tired of sacrificing my days off or having to work extra hours to make up for time lost taking him to appointments. His numerous phone calls about problems, complaints or just to have a go at me are draining.

I'm 33 and I want to focus on my career and having a baby. My brother is in a similar position to me - newly wed, working a post doctorate job and working out his next career steps. We share the load but it doesn't feel physically possible for us to do more. We both also struggle because he was never a loving dad so very little to bond us to him. The age gap (52 years when he had me), culture gap and limited love leaves us uninspired to do more than what we need.

Every day I want him to die or I want to die, either option sounds good. If I feel like this at the early stages how am I going to cope when he's worse? How am I going to cope if I get the job I'm applying for tihat requires 4 hours of commuting each day? How do I cope if I have a baby?

Hi I am sorry about your Dad. My Mum is now in the later stages. The best advice I have is that you get a social worker involved really early and get a care plan in place even if he really is managing most things. To begin with, he might not welcome the idea but we started with just half an hour a day when a carer would pop in and help mum be dressed appropriately for the day and then, as her needs increased, we increased the hours of care. In my experience the earlier stages were the most difficult because everything is a juggling act but getting attendance allowance and a carer made a big difference.

 

[Tragicuglyducky]

So sorry to jump on this post but a lot of the things described are things I'm currently dealing with and I just wondered. Does it get any easier, can you find a balance of doing what you can, trying to get help for the things you can't and letting go of the guilt?

Mums 67 still awaiting diagnosis, had CT scan, scored 50 out of 100 on the Memory Test, struggles with most day to day things can't remember how to do tv, can't always use microwave, can't manage taking tablets etc. Get results on 2nd October, psychiatric nurse is no help but she did say to expect CT scan to confirm Althziemers or Vascular Dementia.

I'm really heartbroken, we were always so close but now we are so distant, she doesn't even look like the same person, she's lost so much weight she's unrecognisable.

The only equipment she seems to know how to use is her phone. She constantly rings me and my aunt from 5 in the morning, even through the night occasionally. Doesn't really want anything doesn't even seem to want to talk.
It's getting so stressful. Mum kept messing her tablets up, one week she took a weeks worth of tablets in 3 days. Psychiatric nurse said as I phone her every day to tell her when I phoned to take her tablets.
I agreed but to be honest it's not working. Mum seems to remember every day that I have to phone her. I've repeatedly told her not to worry I will remember to phone her but that doesn't stop her phoning me from the early hours to see if it's tablet time.
In the end the only way for me to get sleep was to put my phone on silent. I always phone her around 730am. But every day I have at least 6-7 missed calls from her. She seems to let it ring constantly, then it must cut off after a bit then re retries.
She struggles to work out when food is out of date. When I check she gets defensive and thinks I'm having a go, I'm not I just don't want her to get ill with food poisoning on top of everything else. Have to tell her to change her clothes as sometimes they are filthy, that goes down not well at all.
She lives alone, constantly looses things, lost her bank card the other day, couldn't remember if she had left it in a shop or gave it to someone. I rang the bank and cancelled the card.
Explained that a new card would be sent in the post and if she needed to buy something to take money out in her purse. She disappeared and returned with a quality tin full of money, no lid and though it was acceptable to just take this out. Checked her purse too and she had £300 in her purse, the purse that she's constantly loosing. Spoke to my aunt who's being a godsend through all this and she told me to take the money and keep it safe as mum clearly didn't know what to do with it.

I explained to mum I was taking it and keeping it safe, coz if she lost the money like she did the bank card it would be gone forever. But now she thinks I've stolen it. I haven't I would never steal of my mum, the mum I had knows this. But now she's constantly phoning me to say why have you got my money I want it back you have no right. I keep explaining I'm just looking after it and that she doesn't need it at the moment as here bank card has arrived and it's safer to use that.
She has no concept of paying bills, or opening letters, luckily most are direct debit, but opened letter the other day from gas/electric she hadn't paid the bill, hadn't even opened the letter, I said why haven't you paid, she said I haven't got any money in my bank she has, I paid it I rang using mums card so at least she won't get cut off.

The thing is I'm at a loss of what to do.

Mum lives alone, obviously needs help.
But I run my own business work 6 days a week 12 hours most days. I can't take time off at the drop of a hat, I need the money. Also I have two teenage children and a family/house to look after, and as selfish as it sounds I have my own problems.
I seem mum twice a week, take her food shopping and phone her every day. But as much as I'd like to I can't do anymore. The guilt eats me up but also I know this sounds harsh I don't want to be mums carer.
I'm constantly distracted though, if it's not mum phoning constantly I'm worrying is she ok. I'm making so many work mistakes I feel constantly on edge and sad. Not sleeping properly, mum is the first thing I think about when I wake up and the last thing I think about when I go to sleep.
My daughter has said she worries about me as I don't look well, and am so upset and distant all the time. She says she can't remember the last time I was happy, neither can I.
Just not sure how long I can go on like this.
Decided to phone next week after diagnosis and see if social services can assess her but that makes me feel bad, mum will hate me for it. But she needs so much more than I can give, even though it makes me feel like the worse daughter in the world.

But I can't go on like this at this rate I will be ill.

Any advice would be much appreciated.

Sorry for such a long post and jumping on your post.

Big hugs and lots of love to everyone out there struggling xxx

Lou, it makes me very sad to hear what you are going through and I feel like we have similar issues. When my dad was first diagnosed I arranged for some therapy to keep myself sane. One of my biggest problems is my dad and I have never been close - I've always felt he was a burden to me and he's made it clear throughout my childhood that my brother is more important. I was really struggling with the guilt of not wanting to help him. My therapist helped me understand the need to set up boundaries. Can you set yourself rules of when to deal with your mum? Maybe only answer calls during certain times of the day - my dad used to call all hours and I used to answer because I was afraid he was in trouble, since setting a limit the frequency has dropped and has learned to call at the times he's most likely to get me. I've also found that when something has gone wrong he doesn't call so getting g stressed about not answering his calls was pointless! Limit yourself to X hours a week to deal with mum stuff. Set up direct debits or get your mums bills on apps on your phone with email alerts to you. Get all of the help you can - care workers to check on your mum, if possible, simplify the medication - we got dads changed to everything once a night, and then get the pharmacist to put the meds in blister packets - this took some time to adjust to but now works a treat. Ignore the accusations - I'm still trying to get used to them because they're a trigger for me from him constant guilt-tripping me from a young age - you can't change what she believes/says so pretend she's not said anything and deal with the problem. It's painful having to handle your own stuff then having to constantly replace keys/cards/passes/glasses etc. If you can share the load then do that! Can you treat it a little bit like your business - delegate tasks and plan a schedule? I really feel for you

 

[Louhelp1234]

Lou, it makes me very sad to hear what you are going through and I feel like we have similar issues. When my dad was first diagnosed I arranged for some therapy to keep myself sane. One of my biggest problems is my dad and I have never been close - I've always felt he was a burden to me and he's made it clear throughout my childhood that my brother is more important. I was really struggling with the guilt of not wanting to help him. My therapist helped me understand the need to set up boundaries. Can you set yourself rules of when to deal with your mum? Maybe only answer calls during certain times of the day - my dad used to call all hours and I used to answer because I was afraid he was in trouble, since setting a limit the frequency has dropped and has learned to call at the times he's most likely to get me. I've also found that when something has gone wrong he doesn't call so getting g stressed about not answering his calls was pointless! Limit yourself to X hours a week to deal with mum stuff. Set up direct debits or get your mums bills on apps on your phone with email alerts to you. Get all of the help you can - care workers to check on your mum, if possible, simplify the medication - we got dads changed to everything once a night, and then get the pharmacist to put the meds in blister packets - this took some time to adjust to but now works a treat. Ignore the accusations - I'm still trying to get used to them because they're a trigger for me from him constant guilt-tripping me from a young age - you can't change what she believes/says so pretend she's not said anything and deal with the problem. It's painful having to handle your own stuff then having to constantly replace keys/cards/passes/glasses etc. If you can share the load then do that! Can you treat it a little bit like your business - delegate tasks and plan a schedule? I really feel for you

Thank you so much for taking the time to reply and for so many wise words. Yes unfortunately it does seem like our situations are very similar. It really helps to get advice from someone who's going through the same thing.
Me and mum were always close think that is one of the reasons I feel guilty. But I know that the mum I has wouldn't expect me to do more than I do. Before she got ill she wa the one worrying about me that I was working to hard and didn't have enough time to myself. But it doesn't stop me feeling guilty.
I'm trying to field the phone calls and put my phone on silent a lot of the time but then I miss business calls or the kids ringing me. I suppose I'll get there and it will get easier.
Once other help is in play and I know she's being looked after hopefully things will get better. Hopefully once she gets the diagnosis on Monday and we know what we dealing with and she gets the right meds it will help for a short time too.
As scary as it will be finding out what the diagnosis is.
Mums already on the blister packs coz she messed her normal tablets up but she still struggled.
She didn't know what day it was or forgot even though she has a memory clock with the day of the week on it.
So the nurse suggested me telling her to take her tablet when I phone since then she always knows what day it is when I ask her. The only thing is she doesn't like the fact I don't ring when she wants.
I always phone before 8 9 at the weekend but that's not right.
The other day she just looked blank and said I've forgot what I have to do with the tablet do I just swallow it.
Day to day talking she gives the impression she knows what day it is etc but then gets confused. Then anxious.
She forgot to meet my aunt even though she spoke to her on the phone 20 minutes before but it was my aunts fault.
Yet she managed to remember her hair appointment that was written on the calendar. Without being prompted or reminded. I'd forgot about it to be honest.
But she must have seen it on the calendar the same calendar that when my kids where there she didn't realise it was a calendar or what it was for. So who knows.
Therapy sounds good lol they'd probably keep me in.
Not sure how to help with the bills they are all in her name and she doesn't trust me. No idea why the mum I had would have trusted me totally and I've never given her cause not to.
It's a totally sole destroying situation.
Big hugs and lots of love to you.
And thanks again for all your kind words xxx

 

[Louhelp1234]

Hi I am sorry about your Dad. My Mum is now in the later stages. The best advice I have is that you get a social worker involved really early and get a care plan in place even if he really is managing most things. To begin with, he might not welcome the idea but we started with just half an hour a day when a carer would pop in and help mum be dressed appropriately for the day and then, as her needs increased, we increased the hours of care. In my experience the earlier stages were the most difficult because everything is a juggling act but getting attendance allowance and a carer made a big difference.

Thank you so much for taking the time to reply and for so many wise words. Yes unfortunately it does seem like our situations are very similar. It really helps to get advice from someone who's going through the same thing.
Me and mum were always close think that is one of the reasons I feel guilty. But I know that the mum I has wouldn't expect me to do more than I do. Before she got ill she wa the one worrying about me that I was working to hard and didn't have enough time to myself. But it doesn't stop me feeling guilty.
I'm trying to field the phone calls and put my phone on silent a lot of the time but then I miss business calls or the kids ringing me. I suppose I'll get there and it will get easier.
Once other help is in play and I know she's being looked after hopefully things will get better. Hopefully once she gets the diagnosis on Monday and we know what we dealing with and she gets the right meds it will help for a short time too.
As scary as it will be finding out what the diagnosis is.
Mums already on the blister packs coz she messed her normal tablets up but she still struggled.
She didn't know what day it was or forgot even though she has a memory clock with the day of the week on it.
So the nurse suggested me telling her to take her tablet when I phone since then she always knows what day it is when I ask her. The only thing is she doesn't like the fact I don't ring when she wants.
I always phone before 8 9 at the weekend but that's not right.
The other day she just looked blank and said I've forgot what I have to do with the tablet do I just swallow it.
Day to day talking she gives the impression she knows what day it is etc but then gets confused. Then anxious.
She forgot to meet my aunt even though she spoke to her on the phone 20 minutes before but it was my aunts fault.
Yet she managed to remember her hair appointment that was written on the calendar. Without being prompted or reminded. I'd forgot about it to be honest.
But she must have seen it on the calendar the same calendar that when my kids where there she didn't realise it was a calendar or what it was for. So who knows.
Therapy sounds good lol they'd probably keep me in.
Not sure how to help with the bills they are all in her name and she doesn't trust me. No idea why the mum I had would have trusted me totally and I've never given her cause not to.
It's a totally sole destroying situation.
Big hugs and lots of love to you.
And thanks again for all your kind words xxx

Many thanks for replying so sorry to hear about your mum big hugs and lots of love. Thanks for taking the time to respond. Yes you're totally right once we get diagnosis hopefully Monday I'm going to have to do my best to get things in place mums very scared and anxious and needs so much more attention and help that I can give.
as much as it makes me feel like the worst daughter in the world. Big hugs xxx

 

[Amy in the US]

Tragicuglyducky, I don't know that I have a lot of advice or wisdom to share, but I do have a lot of empathy.

Louhelp, I'm also sorry to hear of your situation.

While dealing with dementia is always hard, it must be really frustrating with the multiple phone calls, inability to communicate clearly over the phone, and of course your difficult relationship hovering in the background. For what it's worth, I'm an only child, my mother has dementia, we were never close, and I hate like the dickens that I got stuck with this job for someone I never liked.

I wanted especially to address your comment about feeling like you either wish your dad was dead, or that you were dead, because I definitely felt like this a lot (and sometimes still do, but not like I did before). It wasn't that I actively wanted to be dead, it was just that being dead was the only way I could imagine that the situation would change, or that the feelings that I was having, would stop. I also found it very, very hard to articulate this to anybody in a way they could understand. A lot of the time it felt like screaming into a void. I just wanted to be sure to say something to you, in case that is how you are feeling, to let you know that someone is listening and understands at least a little bit.

My situation is different to yours in that the part where I was trying to support my mother (from 100 miles away, she lived alone and refused all help except me) was before her diagnosis, so although I knew something was wrong, I didn't know it was dementia, and I didn't know how bad it really was. She had a crisis, was hospitalized (the US version of sectioning), and then went into a care home near me. At that point I took over her finances, bills, paperwork, and so on. Prior to that I was taking her to doctor's appointments and fielding a lot of phone calls. So while not exactly like your situation, I do understand what you're talking about.

The phone calls were especially soul destroying so I hear your pain on those. What I eventually had to do was a combination of approaches. First, we got caller ID so I knew when she was calling. I stopped always answering her phone calls. Sometimes my husband would answer, and sometimes we would just let it go to voicemail. After an upsetting message or two, I learned to let my husband listen to and delete the voicemail messages from her. I can't remember if we tried the advice I've read here on TP, about making our voicemail message aimed specifically for the person with dementia who calls (Hi, Mom, I can't come to the phone right now. I will talk to you soon!), but that might be worth a try for you as well. Or you could consider a separate phone number that's dedicated for your dad to call, with appropriate message on it, that's another idea from here on TP. (Louhelp, that might work for you, so you aren't missing calls when your phone is silenced.) When the calls were at their worst, I would cry every time the phone rang. That DID get better, with time, especially as we better managed her dementia and medications and anxiety and she stopped calling so often. She eventually stopped calling altogether as her dementia progressed and she could no longer use a phone, and we got rid of her phone some time ago (she's in a care home).

I wish I could better explain to you how and when things started to feel better, or less awful, or more "normal," for me, but it's been a gradual shift over a long time. I know that I felt for a long time that I had no life outside of dementia and I was very unhappy/resentful/upset about that. I think partly it got better with time, and partly with effort on my part.

I can't really point to any one thing that helped, but I can tell you a long list of things that helped, in the hopes something will resonate with you or someone else reading.

When my mother was still living at home and we were trying to cope with all of her problems, she lived 100 miles away. I started by seeing her about once or twice a month, to take her to doctor's appointments, and by the end, was visiting at least once a week. Those car trips about killed me. I would try to schedule something pleasant for after seeing my mother, usually seeing my favorite aunt or a friend for a meal or coffee before I drove back home. I would talk to a friend on the phone during the drive home, or listen to music, or an audiobook, to keep from thinking about my mother.

Unlike your dad, my mother was NOT coping okay with day to day life, but I didn't know it. Of course she said she was fine (she has anosognosia with her dementia, so of course "there's nothing wrong" with her). She couldn't shop, cook, or eat properly, and ended up underweight and malnourished. She couldn't take her medication properly, and had all kinds of problems from over and underdosing herself. She wasn't bathing or doing laundry or cleaning. Her fridge was full of expired, moldy food. She couldn't pay her bills and she lost money to scammers and there was no end of trouble sorting that out. She had two car accidents that I know of. She had some minor accidents in her flat. Eventually, she had a crisis, went into hospital, got diagnosed, and then we moved her to a care home much nearer where I live (only a fifteen minute drive).

That was when I had to get power of attorney and take over her finances and sort her paperwork and so on. I think some relief came from getting some of these big tasks accomplished: move to the care home, clear the flat, sell the flat, sell the car, register PoA with banks, et cetera, but there always seemed to be something else to do.

I had a therapist and that helped. I found some local support groups and also Talking Point, both of which have been hugely helpful in terms of information and support. I learned about dementia and what to expect. I started seeing a massage therapist, who helped with the muscle tension that was giving me chronic headaches. I took a stress reduction and meditation class, which really helped. I held onto one of my exercise classes and it was so important for me to have a place to go where, for an hour, I couldn't think about dementia. Plus, the physical activity helped. My husband and I started taking vacations again. I try to do more social and "fun" activities and go back to hobbies I enjoyed.

I hope there is some helpful idea or piece of information in there somewhere. Dealing with dementia is really, really hard and I hope you are able to find a way through. It's important to remember that you matter, you have a right to your own life, and you don't have to give that up. Dementia will absorb as much time and energy as you throw at it, so you are right, you have to set some boundaries. So easy to say, but so very hard to let go and do.

Very best wishes and hope you will keep us updated.

 

[Louhelp1234]

Tragicuglyducky, I don't know that I have a lot of advice or wisdom to share, but I do have a lot of empathy.

Louhelp, I'm also sorry to hear of your situation.

While dealing with dementia is always hard, it must be really frustrating with the multiple phone calls, inability to communicate clearly over the phone, and of course your difficult relationship hovering in the background. For what it's worth, I'm an only child, my mother has dementia, we were never close, and I hate like the dickens that I got stuck with this job for someone I never liked.

I wanted especially to address your comment about feeling like you either wish your dad was dead, or that you were dead, because I definitely felt like this a lot (and sometimes still do, but not like I did before). It wasn't that I actively wanted to be dead, it was just that being dead was the only way I could imagine that the situation would change, or that the feelings that I was having, would stop. I also found it very, very hard to articulate this to anybody in a way they could understand. A lot of the time it felt like screaming into a void. I just wanted to be sure to say something to you, in case that is how you are feeling, to let you know that someone is listening and understands at least a little bit.

My situation is different to yours in that the part where I was trying to support my mother (from 100 miles away, she lived alone and refused all help except me) was before her diagnosis, so although I knew something was wrong, I didn't know it was dementia, and I didn't know how bad it really was. She had a crisis, was hospitalized (the US version of sectioning), and then went into a care home near me. At that point I took over her finances, bills, paperwork, and so on. Prior to that I was taking her to doctor's appointments and fielding a lot of phone calls. So while not exactly like your situation, I do understand what you're talking about.

The phone calls were especially soul destroying so I hear your pain on those. What I eventually had to do was a combination of approaches. First, we got caller ID so I knew when she was calling. I stopped always answering her phone calls. Sometimes my husband would answer, and sometimes we would just let it go to voicemail. After an upsetting message or two, I learned to let my husband listen to and delete the voicemail messages from her. I can't remember if we tried the advice I've read here on TP, about making our voicemail message aimed specifically for the person with dementia who calls (Hi, Mom, I can't come to the phone right now. I will talk to you soon!), but that might be worth a try for you as well. Or you could consider a separate phone number that's dedicated for your dad to call, with appropriate message on it, that's another idea from here on TP. (Louhelp, that might work for you, so you aren't missing calls when your phone is silenced.) When the calls were at their worst, I would cry every time the phone rang. That DID get better, with time, especially as we better managed her dementia and medications and anxiety and she stopped calling so often. She eventually stopped calling altogether as her dementia progressed and she could no longer use a phone, and we got rid of her phone some time ago (she's in a care home).

I wish I could better explain to you how and when things started to feel better, or less awful, or more "normal," for me, but it's been a gradual shift over a long time. I know that I felt for a long time that I had no life outside of dementia and I was very unhappy/resentful/upset about that. I think partly it got better with time, and partly with effort on my part.

I can't really point to any one thing that helped, but I can tell you a long list of things that helped, in the hopes something will resonate with you or someone else reading.

When my mother was still living at home and we were trying to cope with all of her problems, she lived 100 miles away. I started by seeing her about once or twice a month, to take her to doctor's appointments, and by the end, was visiting at least once a week. Those car trips about killed me. I would try to schedule something pleasant for after seeing my mother, usually seeing my favorite aunt or a friend for a meal or coffee before I drove back home. I would talk to a friend on the phone during the drive home, or listen to music, or an audiobook, to keep from thinking about my mother.

Unlike your dad, my mother was NOT coping okay with day to day life, but I didn't know it. Of course she said she was fine (she has anosognosia with her dementia, so of course "there's nothing wrong" with her). She couldn't shop, cook, or eat properly, and ended up underweight and malnourished. She couldn't take her medication properly, and had all kinds of problems from over and underdosing herself. She wasn't bathing or doing laundry or cleaning. Her fridge was full of expired, moldy food. She couldn't pay her bills and she lost money to scammers and there was no end of trouble sorting that out. She had two car accidents that I know of. She had some minor accidents in her flat. Eventually, she had a crisis, went into hospital, got diagnosed, and then we moved her to a care home much nearer where I live (only a fifteen minute drive).

That was when I had to get power of attorney and take over her finances and sort her paperwork and so on. I think some relief came from getting some of these big tasks accomplished: move to the care home, clear the flat, sell the flat, sell the car, register PoA with banks, et cetera, but there always seemed to be something else to do.

I had a therapist and that helped. I found some local support groups and also Talking Point, both of which have been hugely helpful in terms of information and support. I learned about dementia and what to expect. I started seeing a massage therapist, who helped with the muscle tension that was giving me chronic headaches. I took a stress reduction and meditation class, which really helped. I held onto one of my exercise classes and it was so important for me to have a place to go where, for an hour, I couldn't think about dementia. Plus, the physical activity helped. My husband and I started taking vacations again. I try to do more social and "fun" activities and go back to hobbies I enjoyed.

I hope there is some helpful idea or piece of information in there somewhere. Dealing with dementia is really, really hard and I hope you are able to find a way through. It's important to remember that you matter, you have a right to your own life, and you don't have to give that up. Dementia will absorb as much time and energy as you throw at it, so you are right, you have to set some boundaries. So easy to say, but so very hard to let go and do.

Very best wishes and hope you will keep us updated.

Hi Amy thanks so much for taking the time and trouble to reply. Such a lovely and helpful message. So many of the things you describe are things happening either physically or thoughts in my head.
Hopefully after the official diagnosis on Monday we will know what we're dealing with and then I can start to get things working.
You gave so many useful tips that I'll be sure to try thanks so much.
Big hugs and lots of love xxx

 

[Amy in the US]

You are most welcome. I will be thinking of you on Monday. Hang in there!

 

[Kazzy2016]

Hi

My situation is a little different. I was originally working and caring for a parent with Dementia; this became so difficult and sole destroying; I used to work 8 hour days, then come home (We live together) and then spend another 6 hours caring. Eventually I left employment to care full time. Being a carer is hard work. We are further in with Dementia- mid stages onwards.

You need to put yourself first else wise your health will suffer, I am fortunate that I had a close relationship with my PWD from years ago.

Don't let a parent become manipulative, you need to be able to have a life and career. I was fortunate that I took redundantcy which was offered at about the time I was considering going part time. You will develop a strategy that works for you.
Come and vent on the forum where there is no judgement and a lot of support.

Kazzy2016