First timer - I feel so selfish and helpless

JoannePat

Registered User
Jan 24, 2019
212
0
I am so on edge and really don't know where to begin. I know we all have a story to tell and looking through some of the posts I realise that some of you are going through so much more than me.

I suppose I am using this as therapy for myself really, getting it down in writing sometimes lifts the stress - slightly!

This is about my mum and some of the things I am going to say will sound a bit blunt - sorry!

Me and my husband noticed about 18 months ago that my mum was "changing", she has always been argumentative, opinionated and never showed much love. But instead of arguing back, she would break down in tears. She would repeat herself, or call me four times to check an arrangement. It all came to a head last Christmas (2017), when she said that everyone in the lounge were strangers and she was embarrassed that they had bought her presents. In actual fact they were all family - mostly her grandchildren.

We sort of dealt with that and i suppose we brushed it under the carpet to a degree. We carried on for a few months, then she completely cut herself off. She wouldn't answer the phone and when she LET my dad answer, I could hear her in the background trying to stop him from talking to me.

Eventually, she called me one day and said she had been unwell and that she had a dr appointment and would I go with her. She had a UTI and was really, really unwell with it. I put the personality changes down to that, as i know it can cause major problems. At the drs I explained that mum had been forgetful and I thought there some memory issues. When we got outside my mum went APE! The dr said she would get her a nuerology appointment. My mum was not happy - in fact she didn't speak to me for two weeks!

She got over the UTI but still wasn't herself.

In November she had a stroke. The symptoms have worsened. My dad is her primary carer. She has never lost her speech, she has only lost some movement in her right arm.

My dad won't accept any help (he is 83 and she is 71). He has lost masses of weight and i think is living on his nerves. I call them twice a day and go round there at least 3 times a week. They won't listen to anything I say and they can afford private care but won't spend the money.

I am now getting towards the end of my rope. I run my own business with my husband, so I can't take over any permanent care. I am the only child and feel so anxious all of the time.

I know that no one can help but just to know that someone out there may read this is helpful in itself.

Thank you,
jx
 

kindred

Registered User
Apr 8, 2018
2,938
0
I am so on edge and really don't know where to begin. I know we all have a story to tell and looking through some of the posts I realise that some of you are going through so much more than me.

I suppose I am using this as therapy for myself really, getting it down in writing sometimes lifts the stress - slightly!

This is about my mum and some of the things I am going to say will sound a bit blunt - sorry!

Me and my husband noticed about 18 months ago that my mum was "changing", she has always been argumentative, opinionated and never showed much love. But instead of arguing back, she would break down in tears. She would repeat herself, or call me four times to check an arrangement. It all came to a head last Christmas (2017), when she said that everyone in the lounge were strangers and she was embarrassed that they had bought her presents. In actual fact they were all family - mostly her grandchildren.

We sort of dealt with that and i suppose we brushed it under the carpet to a degree. We carried on for a few months, then she completely cut herself off. She wouldn't answer the phone and when she LET my dad answer, I could hear her in the background trying to stop him from talking to me.

Eventually, she called me one day and said she had been unwell and that she had a dr appointment and would I go with her. She had a UTI and was really, really unwell with it. I put the personality changes down to that, as i know it can cause major problems. At the drs I explained that mum had been forgetful and I thought there some memory issues. When we got outside my mum went APE! The dr said she would get her a nuerology appointment. My mum was not happy - in fact she didn't speak to me for two weeks!

She got over the UTI but still wasn't herself.

In November she had a stroke. The symptoms have worsened. My dad is her primary carer. She has never lost her speech, she has only lost some movement in her right arm.

My dad won't accept any help (he is 83 and she is 71). He has lost masses of weight and i think is living on his nerves. I call them twice a day and go round there at least 3 times a week. They won't listen to anything I say and they can afford private care but won't spend the money.

I am now getting towards the end of my rope. I run my own business with my husband, so I can't take over any permanent care. I am the only child and feel so anxious all of the time.

I know that no one can help but just to know that someone out there may read this is helpful in itself.

Thank you,
jx
Welcome and you will find so many friends here, sweetheart. You have been through hard time. I do so wish your dad would accept help. Have you got any social services involvement? It really is best that you don't take over the caring role yourself as you will be landed with it and not able to retract. And this is not selfish. You have your own family and business to think of.
It's going to be hard to stand back a bit, you have helped so much. All good wishes to you and we will all understand here, believe me. With warmest wishes, Kindred.xx
 

karaokePete

Registered User
Jul 23, 2017
6,576
0
N Ireland
Hello @JoannePat, you are welcome here and I hope you find the forum to be a friendly and supportive place.

Do continue to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

Unfortunately it's a fact that sometimes outside help will not be accepted until a crisis occurs. However, the fact that your parents are self funding will not negate that they are entitled to a needs assessment as vulnerable adults.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

JoannePat

Registered User
Jan 24, 2019
212
0
Thank you so much @kindred and @karaokePete, just reading your replies has sent me into tears!

We live in Southern Spain and the after care/home care system isn't great. Even when she was in hospital after the stroke we were expected to be by her bed 24/7 - literally! Don't get me wrong the health care system here is brilliant. But a country with big, multi layered families tend to all look after each other!

I just wish that my dad would listen when we tell him that she is showing signed of dementia. He just brushes it off. And when the GP got her a neurology appointment - she wouldn't go, saying that we were her family and we should be protecting her!

think you all so much for listening!

xxx
 

karaokePete

Registered User
Jul 23, 2017
6,576
0
N Ireland
I understand your position.

For a few years now my wife and I have been spending the winter months in Cyprus. We had thought of settling here but then my wife's diagnosis ended out plans because the same lack of support exists in Cyprus, for the same reason.

It is sad when hopes and dreams get shattered. However, it is what it is!

I know we have at least one other member in Spain so maybe they will see your post and be able to share experiences.
 
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JoannePat

Registered User
Jan 24, 2019
212
0
Well, just a mini update! My dad is still not accepting any help. I arranged for the Care Manager to meet me at my parents so that we could all have a "chat" and see how things were going.

My mum didn't remember so many things - which was kind of a plus point for as she hadn't been like this in front of the Care Manager before, and I always felt like a liar when I was explaining it to him.

They say they can cope and don't need help! As @karaokePete says, it may take another crisis! Its all so frustrating!

I don't want them to lose their independence I just want them to enjoy now. They won't even agree to get the heavy shopping delivered, I have explained that they can still go to the supermarket and get their fresh stuff! My mum just kept saying, but i like going to the supermarket. It didn't matter how many times i explained it to her!

Sorry, I am just ranting now! But it helps my day :rolleyes:

xxx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,808
0
Kent
Sorry, I am just ranting now! But it helps my day

You are not `ranting` @JoannePat. You are off loading which is what Talking Point is here for. You are among people who understand the anxieties and frustrations of caring.

In some respects when dealing with dementia and proud and independent parents, it may be best to choose your battles wisely.

Perhaps if you ask your parents to tell you when they want help, even if it means waiting for a crisis which I know you are doing your best to avoid, you might be able to conserve precious energy and reduce your frustrations.

I remember my husband accusing me of taking his independence away from him and it made me tread more carefully.
 

Sirena

Registered User
Feb 27, 2018
2,332
0
I don't want them to lose their independence I just want them to enjoy now. They won't even agree to get the heavy shopping delivered, I have explained that they can still go to the supermarket and get their fresh stuff! My mum just kept saying, but i like going to the supermarket. It didn't matter how many times i explained it to her!

xxx

I had that issue with my gran - she would not accept help of even small things like doing an online shopping delivery (for the same reason - the supermarket was a trip out for my gran). In the end I just did an order for her, and she seemed happy with it. I think debating these type of things just wastes both your energy, and you get stuck in 'a loop' about it. Try just doing it and telling her when it is arriving - if you can trust her to be there when it arrives. (My supermarket allows you to add an explanatory note for the driver, so I told him to remind her it was from me, in case she thought it was a mistake and turned it away!)
 

Susan11

Registered User
Nov 18, 2018
5,064
0
I had that issue with my gran - she would not accept help of even small things like doing an online shopping delivery (for the same reason - the supermarket was a trip out for my gran). In the end I just did an order for her, and she seemed happy with it. I think debating these type of things just wastes both your energy, and you get stuck in 'a loop' about it. Try just doing it and telling her when it is arriving - if you can trust her to be there when it arrives. (My supermarket allows you to add an explanatory note for the driver, so I told him to remind her it was from me, in case she thought it was a mistake and turned it away!)
I persuaded my Dad to have a red button telephone alarm. He really didn't want one but I explained that it wasnt really for him but for me so I could sleep at night without worrying about him .
 

Lawson58

Registered User
Aug 1, 2014
4,405
0
Victoria, Australia
Well, just a mini update! My dad is still not accepting any help. I arranged for the Care Manager to meet me at my parents so that we could all have a "chat" and see how things were going.

My mum didn't remember so many things - which was kind of a plus point for as she hadn't been like this in front of the Care Manager before, and I always felt like a liar when I was explaining it to him.

They say they can cope and don't need help! As @karaokePete says, it may take another crisis! Its all so frustrating!

I don't want them to lose their independence I just want them to enjoy now. They won't even agree to get the heavy shopping delivered, I have explained that they can still go to the supermarket and get their fresh stuff! My mum just kept saying, but i like going to the supermarket. It didn't matter how many times i explained it to her!

Sorry, I am just ranting now! But it helps my day :rolleyes:

xxx
I find that I don't ask my husband about anything important these days because I know he will automatically say no, and I don't think I am alone on that score on TP.

I make arrangements and write them in the diary and on the white board as the time gets close. On the day, I will tell him that he has an appointment with dentist, geriatrician, GP, podiatrist, hairdresser - whatever and that he has to be ready by a certain time, always earlier than necessary because he takes forever to get showered and dressed. I usually say something like. "We are going out for a coffee later but on the way, we are stopping off at the GP's " (or whatever). I then usually say something about him going to play bridge later.

Of course, none of this happened overnight but for the moment it is working and anything that keeps the peace is good. It seems that if it is in the diary or on the white board, then he accepts it. And I think in mixing in the appointment with more pleasant things, it distracts him from the main purpose of the outing.

I do know that it has made life easier when I have had to take him into the Emergency Dept. as he seems to be relieved that I have made the decision for him.
 

JoannePat

Registered User
Jan 24, 2019
212
0
Hi, another mini update......I have just found out that yesterday they had a routine drs appointment and when they came some "nice young boy" gave them a lift to their car! It was mum that told me, so at first I wasn't sure whether to believe her. My dad called me back and confirmed it! I am devastated that they think this is ok! Neither of them understood when I said it was so dangerous.

We went to there house on Sunday and although everything looks ok, when i went to the fridge there was out of date food and enough yogurts to sink a ship. I didn't want to start going through their food and checking everything because i get accused of interfering and then we end up in a row!

My mum is now getting seizures in her right arm, she has been sent for tests so we are waiting for the results of that, but when it happens she gets really upset and although not aggressive she gets "that" face!

I have so many mixed feelings guilt/upset/annoyed/guilt/frustrated/guilt!

Well, to anyone that reads this thank you, it has helped just writing it down!

Jx
 

Prudencecat

Registered User
Dec 21, 2018
27
0
I found with my mum there was a turning point when she was admitted to hospital. Previously she would not accept carers but the hospital said that she could not be discharged without carers 4 times per day. She is self funding and of course they begrudge paying out but to begin with the extra help was enough to make a big difference to her well being. It's difficult because they start to see you as someone who is telling them what to do.
 

JoannePat

Registered User
Jan 24, 2019
212
0
I found with my mum there was a turning point when she was admitted to hospital. Previously she would not accept carers but the hospital said that she could not be discharged without carers 4 times per day. She is self funding and of course they begrudge paying out but to begin with the extra help was enough to make a big difference to her well being. It's difficult because they start to see you as someone who is telling them what to do.
Oh I am so getting the "don't keep telling me what to do!", we are sort of waiting for the next big "event", which is a dreadful thing to have in the back of your mind, but her and my dad just won't listen to anything! So frustrating isn't it?
 

Sirena

Registered User
Feb 27, 2018
2,332
0
My grandmother had a fridge full of out of date food (a lot of M&S rice pudding - her favourite) and I used to go round from time to time and empty it all into a bin bag. I waited till she was out of the room (usually after lunch when she was having a rest with a cup of tea). I did the same with the freezer which contained some bizarre items. She never noticed it had been done.
 

lis66

Registered User
Aug 7, 2015
277
0
Hi joannepat.you could be writing my story mum has had Alzheimer's for six years ,she is 76 and dad is 84 . The rows I have had with dad ,I told your mum he says and I'm going she forgets in seconds ,I don't think he will ever grasp that part of the illness.Im an only child and it is so very hard when your parents won't work with you mine didn't make things easy for me their life stayed the same because I done everything for them ,carer cleaner etc and still do sorry it does help to rant !!!
 

SewHappy

Registered User
Feb 3, 2019
29
0
Oh I do remember how that feels. Stepfather wouldn't allow help looking after mum and said he was managing. There's so many ways he wasn't managing, including looking after his own health problems. For several years I was regularly having to drop my own plans, break promises and mess work about to dash over to sort out all sorts of emergencies. His daughter was an invisible. He always had a reason why the latest emergency was a one off! To put me off pushing him to get additional help he would shout at me in front of mum knowing that if we argued it would upset mum so I'd back off. Banned me from the house once when I pushed too hard but had to call me when he had messed up again.

We lurched from one crisis to another until the final one when he had a fatal fall. Ironically he wouldn't have been doing what caused the fall if he had accepted help. His daughter was an invisible at his funeral too.

Still feel the need to rant a few months on.
 

JoannePat

Registered User
Jan 24, 2019
212
0
Hi All, well I bit the bullet yesterday and tried to clear out the fridge! She went APE :mad:! I tried to do it when she wasn't in the room and even tried to be light hearted about it! She caught me......she made me feel about 4 years old again. Although it was her with tears streaming down her face. Saying things like "you come in my house and start ruining everything, turning out my fridge! Throwing things away", btw, at that point I had unearthed 15 yogurts, some going back to November!
Then the fing and blinding started. I told her that I was making everyone a coffee and when I went to get the milk I noticed the smell and then noticed the out of date food. She didn't react well to that either!
Anyway, I served everyone coffee, stayed and talked to my dad for another hour (ignoring her). Then left. My dad just keeps apologising and I have told him that it is ok.
This morning he called me and said the "dementia" is getting worse and the mental abuse from her is getting to the point that he doesn't know what to do or say.
He even has to stand over her while she takes her meds!
They will not accept carers, cleaners or help.
Once again, I am just relived to write this down and know that we are all in this together! if only we could put a bandage on it!
Oh, just a quick side note........they had a respiratory appointment last week and this morning I asked dad how she acted with the consultant.................he said she was fine! :confused: I am sure it took all of her effort to put on a false front for the dr. Its just a shame that she treats us all like dirt.

Jxx
 

TheBearsMummy

Registered User
Sep 29, 2017
100
0
East Midlands
JoannePat, I know what you are going through especially with the fridge and refusal of any help.
Please try blaming the doctor or the council for everything. The doctor has said they must /must not do whatever and the council is sending a cleaner for an hour a week to everyone over 65/70/whatever age as part of their new training scheme to get people into work. You can dress it up a bit with a perfectly true statement of "I wish the council would send me a free cleaner I'd soon find them plenty to do".
I find it easiest to clear stuff from the fridge if I take new shopping, make a cup of coffee to distract then put out of date stuff straight back into my shopping bag not the bin. If she spots it then it's just some bits of my shopping that got in the wrong bag.
It's amazing how inventive I've become but it's not easy you have to keep reminding yourself that it's done with the best of intentions to keep them safe and that includes from themselves.