Does anyone else dread visiting a parent?

[Pear trees]

Does anyone else dread visiting their parent? I am seeing my 89 year old mum tomorrow, and already I am getting stressed about it. She does not want to see me either, but wants her spending money. She will often snatch the money out of my hand then tell me to ****** off! I have to insist she lets me in to check she has food and carers and cleaners have been, and to check how she is.
We never got on even when I was very young, and I never did anything right, and she enjoyed upsetting me. I 'care' for her out of duty, there is certainly no love or even respect.

 

[Delphie]

Yes, I used to absolutely dread going to see my mum. Like you, everything I did for her was driven by duty more than by love. By some weird guilt too. The relationship had been difficult pre-dementia and it pretty much completely disintegrated when the Alzheimer's made her completely paranoid. She became aggressive, hostile, angry, accusatory and most visits were extremely stressful. My stomach used to tighten as I approached her house and my blood pressure climbed higher and higher with every passing month.

But she's in a care home now, and has been for over 3 years and things have improved. She's medicated and the illness has progressed, so she's calmer. I'm no longer her daughter and probably haven't been for a lot longer that I realised at the time, when she seemed to be recognising me with a big smile. In her head I'm her sister, mother, someone she kind of knows. But then I've seen her react that way to strangers, so who knows... The accusations have stopped, though, and I chat to her about nice things and she responds.

Anyway, what I wanted to say is that I visit but the dread is gone. I now feel the odd twinge of that weird guilt still, from time to time, and sadness that the strong woman I knew is gone and that we'll never resolve the issues from the past. That's still not easy to deal with, but better than the stress filled times.

So hang on in there. This too will pass.

 

[TooHard]

I do. I've always had a difficult relationship with my mother which is increasingly strained now. Her unwillingness to accept help (and/or her inability to recognise how much she needs it) means that when I visit (every 3-4 weeks - I live over 100 miles away - staying for 2 nights) I have to deal with levels of squalor I find repugnant. The authorities don't give a damn and I veer between praying for the crisis that will trigger proper support (almost certainly a care home) and hoping that the basic, long distance care I provide diverts the crisis. Either way, mum is hardly ever off my mind and I can feel anxiety levels rising to an unhealthy level.

 

[Quilty]

I completely understand. I used to feel sick every time i drove into her street or the phone rang. If duty is important to you then you are doing the right thing. It was to me and when she passed in March it was important to me and my mental health that i had been there. Your a dementia warrior and we salute you. Its not for ever. Stay strong. Xx Quilty

 

[lemonjuice]

Does anyone else dread visiting their parent? I am seeing my 89 year old mum tomorrow, and already I am getting stressed about it. She does not want to see me either, but wants her spending money. She will often snatch the money out of my hand then tell me to bu**er off! I have to insist she lets me in to check she has food and carers and cleaners have been, and to check how she is.
We never got on even when I was very young, and I never did anything right, and she enjoyed upsetting me. I 'care' for her out of duty, there is certainly no love or even respect.

I think almost everybody who has a relative with dementia will empathise with this feeling.

It was the anger when Mum was unhappy in the earlier stages and going out of duty because one felt guilty if one didn't. In those days sometimes it all got too much and I actually used to say sometimes, "Well if you're that unwelcoming and unhappy, I'll go now then." Would get my coat and leave, feeling even more guilty but just not able to stand the tirades.

Looking back you know I somehow miss that feistiness. At least I felt Mum was still in there'.

Now at severe end stage (and been this way for over 2 years now) I dread going for different reasons. I no longer go to visit my mother- no recognition, no response, even facial or return squeeze of hand etc., but merely to alert the Home that someone is checking on what they are doing.
I dread going even through the door (feelings of guilt) and can only stay a very short time. One time I could only stand 6 mins as I found out when signing out the book as I left.

It breaks my heart to see anyone at this stage (one I hoped against hope she would never reach, having watched it with other relatives), let alone my own mother.

Roll on bedtime when one gets a bit of relief, is my waking thought.

As another poster says it may not be the 'hands on caring' but the emotional stress and anxiety levels are always there.

 

[Marbella79]

Guilt and constant sadness

Yes, I dread walking in to the care home. Just want to take her home. She cries when we leave.

 

[Georgina63]

Yes! Totally get that. Not just on, but both. See my Mum and Dad every day - sometimes I'd just rather not! They live nearby, still at home and both have AD. Some days I dread it when the phone rings wondering what the next problem will be. Sometimes I wish I didn't have to call round (in addition to all the other organising of stuff for them). Also here same time every week so Dad can go out to meet friends while I look after mum - generally fine, but it's the having to be here and not feeling there's a choice. That said, who knows what's around the corner (well I have a good inkling of course!!) and so am trying to help make the most of their time together living in their own home. Every good day, or part of is a bonus. Gx

 

[Pear trees]

My visit went quite well yesterday. She actually said thank you for her money, and she liked one of the 3 pairs of shoes I had bought for her (all same size and style, different colours). I had to stop her showing every lady on the lunch bus her new shoes and opening her purse to show them she had money!
The cleaner and carers had done a good job, no dried in poo in bathroom or rubbish piled in kitchen, and she had had a shower and change of clothes.
I know each day is different and she may well be back to usual next time!

 

[Toddleo]

Your a dementia warrior and we salute you. Its not for ever. Stay strong. Xx Quilty

"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!

 

[Princess t]

Yes. I hate driving down her lane and turning into street, I hate phone ringing here. I hate my sisters phoning as it's always about mom. We were all so close before this. I loved visiting mom but not now.

 

[Soobee]

yes, I used to put it off as long as I could, balancing the guilt with the dread.

Since she's died I regularly find myself missing those visits, even though I had to build up to them, and I'm not really sure why I still miss them as she's been gone two years.

 

[Quilty]

"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!

Thanks. Im glad anything I said help someone. I lost my Mum on March to dementia. When I reflect back I don't know how I managed some days. Everyone with dementia or caring for someone with dementia is a warrior. Its hard to be a carer but I cant imagine how it felt for Mum. We can all take strength from each other. None of us does this alone.

 

[hancmont]

Does anyone else dread visiting their parent? I am seeing my 89 year old mum tomorrow, and already I am getting stressed about it. She does not want to see me either, but wants her spending money. She will often snatch the money out of my hand then tell me to bu**er off! I have to insist she lets me in to check she has food and carers and cleaners have been, and to check how she is.
We never got on even when I was very young, and I never did anything right, and she enjoyed upsetting me. I 'care' for her out of duty, there is certainly no love or even respect.

I completely empathise with you. A friend said to me today, 'your not talking to your mum but to the Alzheimers'. My own mum has never been an easy woman but she has always been a good mum to my brother and I and even in adulthood, still worried about us. Now she is in a care home and hates it and isn't settling. My poor brother lives nearby and used to visit daily but has been finding too stressful as all he gets when he goes to see her is either stoney silence or her saying the same thing over and over again about wanting to go home, why have you put me in here, all mixed in with total gibberish. I live 250 miles away so at least physically have some distance but any holiday time I have is spent travelling up to see my mum. Even living so far away I get no respite, with my brother calling 2-3 times a day to off load and with updates. I dread the phone going. My mum has a mobile but refuses to answer it, also a GPS tracker which she can't turn off and we've tried to speak to her that way but now she is just refusing to talk. At the end of the day we know she is safe, in a place we are happy with. All we can do is keep visiting but take a break from it now and again and only stay short periods of time if she is non communicative or nasty. What kind of reception does your mum give the carers? I certainly think that sometimes strangers get a better deal than family, not sure why that is? Don't feel guilty about not wanting to go and visit. X

 

[Pear trees]

Hancmont, I am lucky that mum's carers are private and family friends and she knew them before dementia, and they all say mum is a 'character'! When we arranged agency nurses they were different people all the time. Mum has a problem with strangers especialy 'foreigners' and would not let them in, and if they let themselves in she would chase them out with her stick!
.

 

[Crunchy]

Hi, I haven't posted for a while, but yes, I am getting quite depressed now about having to visit my mum in her local care home as she has no-one else to visit her, apart from my kids a few times a year.
My dad was very disturbed and paranoid and mad as a box of frogs, but at least visiting him was always novel and involved some crazy conversation until his last few weeks. Now he's gone I realise my mum's short term memory loss means I no longer have a parent I can interact with much, bless her. She loves seeing me, so I see her twice a week for about an hour on my way home from work, but I'm always so tired, and the thought of sitting there answering the same questions and in the same lounge with the tv blaring, or at the same table, fills me with doom. All the effort has to come from us, to take in photos or change the conversation, it's so draining isn't it. As someone said above, it's the balance between the dread and the guilt isn't it.

I take her out now and again, and at least that involves variety. The garden centre is a great one, highly recommended, nice and flat with loos and a cafe and lots of pretty things to stimulate conversation. I know I am so lucky that selling their house means she can be cared for near me, so really I have nothing to complain about. I have physical freedom from looking after her but mentally I feel utterly shackled, she's been physically well for decades but has had no short term memory for about 15 years, this might go on for years and years.

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?!

 

[pahaps]

Crunchy, I've found the posts on this thread the most disturbing I've read on the forum so far. I applaud the bravery that people have shown in opening up about their difficult feelings. I'm a relative newcomer and certainly have it easy compared to many. Being a distant carer is tough in its own way but your last paragraph resonated with me. I find myself thinking about what's in store for me and others in my family. Dad had/has many siblings, several with Alzheimer's. His mum too. It's a subject that comes up when speaking to my many cousins.
Thank you for sharing but I'm afraid I have no practical advice to offer to combat guilt. I do agree though that this is indeed a vile disease.

 

[Tattoo Lane]

Hi - I have mixed feelings about visiting my Mum - she lives alone, and is still sort of coping, but we are now looking at having a little support for her - this could be difficult as she obviously is fine!I live a long way from her, and am an only child ( ok I'm not a child at all , but hey!) and so the burden is on me. I dread it and look forward to it all at the same time. I dread seeing her slipping away, forgetting really important parts of her life, but I look forward to hearing her voice and seeing her smile and feeling her hugging me. I dread the phone calls in case something has gone seriously wrong, but feel that when I'm there i can at least sort things out to make her life a little easier. It's such a mixed bag for me. Luckily, although we didn't used to get on well, over the last 20 years our relationship has become really good, and we have let the past go. We love each other dearly ( even if sometimes we can't breathe the same air) and I dread the day when I have to make those horrid decisions about a care home etc. Hopefully , as Mum is 99 in October, she may not live long enough - and awful as it may sound, she and I both want her to just go to bed one night and not wake up ( not because i DON'T love her - but because I DO love her and want her to have an easy passing out of life.)So for me - it's mixed up, guilt and fear, laughter and exasperation, frustration and hugs ....

 

[JohnBG]

New Normal

It is understandable to think like this who had any inclination this process would be so challenging, my mother has started getting agitated at me, I know that is her illness although she was unreasonably authoritative at ties before.

I have my own values so we say when comments are just rude or irrational, on the basis that she continues to be in denial, why would cleaning be necessary so I wash up, even that is not right we have visits four times a day from young girls who she feel she can boss about as well. My mother keep food well past its sell by date, which in itself is a health hazard to her.

More recently she started shouting at me,so I stayed away fir a while she has no recollection of these events which is to be expected. We seem to be chasing the pharmacy and the care agency to do the simplest of tasks, even within her care plan.

I seem to be doing the day shift, night shift plus everything else in between, as my wife says this illness only seems to have enhanced her challenging behaviors at times, most things have to be done her way, even the irrational aspects. Perhaps the more I do the more is expected, my current goal is to get someone else to take her food shopping, so she is safe.

It is certainly as aspect of my quality of sleep, as the Alzheimer Nurse suggested just agree, that is ok although not with everything that lack of capacity to understand plus continuing denial does make daily living eventful. As the notion of a care home looms in the distance her own safety paramount, I do try not to get ahead of events to cope myself more effectively plus manage those immediate needs.

Good luck to you all, you are doing a great job never forget that,be kind to yourself.

John. 5am.......

 

[Tattoo Lane]

Yeah, I hear you JohnBG. I either sleep like a pig or am up half the night worrying. It's good to be able to share these feelings with other people who really understand how tough it is. Sleep tight when you get there. Hugs xx

 

[JohnBG]

New Normal

Thank you,it is easy to think we are doing this alone where TP brings that experience and understanding altogether.

John. (())