Finding visiting so hard

[Clare8146]

My poor Dad has end stage Parkinson's and dementia. Just over a year ago he was living at home managing without care and only mild early dementia. He then got a nasty urine infection which led to sepsis and delirium. He spent 6 weeks in hospital with very challenging, aggressive and violent behaviour. Sadly this didn't improve so he was discharged to a challenging behaviour unit.
Over the past year his behaviour improved but his deterioration into end stage dementia has been rapid. He has no movement and just recieves bed care.
The nursing home is half an hour away from me but is nearly a 3hour round trip for my Mum and the rest of the family. As a result I see him most often. I'm starting to find this so hard. Visits are never a happy time. Dad is often agitated, accusing Mum of leaving him, he's offhand with me thinking we've plotted to put him in a home. It's horrible I lost my warm and affectionate Dad a year ago. There hasn't been a moment of affection or a feeling that I am providing reassurance and support in all the hours I have sat at his bedside in the last year. He knows who I am but no longer sees a loving daughter with whom he had a close bond. Instead I feel that I am just a connection to my Mum and all the misplaced angst he feels towards her.
I know that he can't help it and I try so hard to put up a barrier emotionally to protect myself from the agitation and aggression.
I miss Dad so much and hope during each visit that I'll find a connection and moment of the Dad I knew. Instead I come home feeling either emotionally numb or emotionally bruised and battered.
There is so much pressure from the rest of the family that as I live closest I'll visit the most. It's becoming too much though.
How do you deal with such draining visits? It was easier when I could visit him when he was in a wheel chair and in the lounge. Other residents and staff would wander in and out and it would help break the groove of the negative conversation that Dad was in. Now he is just in bed so I'm sat by his bedside with no other company.
It's reaching the point where I dread visiting ?

 

[Thethirdmrsc]

Hi @Clare8146 it is an emotional and physically exhausting thing visiting. My OH has been in 8 months, and I’m still coming to grips with it. I usually go 3 times a week, and stay for about 3 hours. He is always in his room, but the door is open and often some of residents will stop to talk to our dog, and that’s a bit of a chat for him. I take him bananas, so he’ll usually eat one, I might put the tv on, and talk about what’s on, or I show him old photos on my iPad, or put music on and we have a bit of a sing song. It tends to be the same things over and over, but unless others have suggestions, mine are a bit limited.

 

[Shedrech]

Hello @Clare8146
A warm welcome to DTP

Your poor dad has really been through it ... as have you and your family

It's so tough when sadly the dad you love loses the empathy and understanding he used to show and seems not to value his daughter ... dementia messes up so much ... I do, though, think there's something in the saying that we take out our negative feelings on those who are closest, but it's a back-handed compliment and no real compensation

I do think your feelings matter ... you have made sure that your dad is rlooked after and receiving the support he needs ... you say he doesn't seem to take anything positive from your visiting so often, and it's taking its toll on you, so for a while cut back on how often you go, to see how it is then for you both ... I appreciate that your family would like your dad to be visited, so check in on him by phoning regularly, send him postcards the staff can read out (that's you and your mum), send little gifts to 'keep in touch, anything you all can come up with

keep posting, sharing experiences helps

 

[Carmenjane]

Maybe you could start cutting back by going as often but not staying so long? Three hours is a very long time when it’s such a difficult experience for you.

 

[Firecatcher]

I would cut back on the visits and either go less often or for a shorter period of time. Don’t let other family members pressurise you either.

 

[Lellyhelly]

My poor Dad has end stage Parkinson's and dementia. Just over a year ago he was living at home managing without care and only mild early dementia. He then got a nasty urine infection which led to sepsis and delirium. He spent 6 weeks in hospital with very challenging, aggressive and violent behaviour. Sadly this didn't improve so he was discharged to a challenging behaviour unit.
Over the past year his behaviour improved but his deterioration into end stage dementia has been rapid. He has no movement and just recieves bed care.
The nursing home is half an hour away from me but is nearly a 3hour round trip for my Mum and the rest of the family. As a result I see him most often. I'm starting to find this so hard. Visits are never a happy time. Dad is often agitated, accusing Mum of leaving him, he's offhand with me thinking we've plotted to put him in a home. It's horrible I lost my warm and affectionate Dad a year ago. There hasn't been a moment of affection or a feeling that I am providing reassurance and support in all the hours I have sat at his bedside in the last year. He knows who I am but no longer sees a loving daughter with whom he had a close bond. Instead I feel that I am just a connection to my Mum and all the misplaced angst he feels towards her.
I know that he can't help it and I try so hard to put up a barrier emotionally to protect myself from the agitation and aggression.
I miss Dad so much and hope during each visit that I'll find a connection and moment of the Dad I knew. Instead I come home feeling either emotionally numb or emotionally bruised and battered.
There is so much pressure from the rest of the family that as I live closest I'll visit the most. It's becoming too much though.
How do you deal with such draining visits? It was easier when I could visit him when he was in a wheel chair and in the lounge. Other residents and staff would wander in and out and it would help break the groove of the negative conversation that Dad was in. Now he is just in bed so I'm sat by his bedside with no other company.
It's reaching the point where I dread visiting ?

You are doing so well, I find visiting my mum so difficult and upsetting. My presence seems to really agitate her, mum isn’t able to articulate words. She screams at the top of her voice and wails and cries. I have taken the advice of members of this forum and now intend to just pop into the Home for 10 minutes or so, to check on her well-being every 2 weeks. I am her only regular visitor but it’s seems I have a negative effect on her.

 

[Dutchman]

MHi @Clare8146 it is an emotional and physically exhausting thing visiting. My OH has been in 8 months, and I’m still coming to grips with it. I usually go 3 times a week, and stay for about 3 hours. He is always in his room, but the door is open and often some of residents will stop to talk to our dog, and that’s a bit of a chat for him. I take him bananas, so he’ll usually eat one, I might put the tv on, and talk about what’s on, or I show him old photos on my iPad, or put music on and we have a bit of a sing song. It tends to be the same things over and over, but unless others have suggestions, mine are a bit limited.

Hi @Thethirdmrsc
I’m sitting here thinking about shall I or shall I not visit today when I came across your post.

For me it’s so confusing because it’s always a mixture of feelings of abandonment and desertion mixed with I know she’ll be alright and cared for without me. Then I think “ what do I get out of it?” and it’s not a lot apart from smiles, the odd giggle and the feeling I’m doing something a little worthwhile and helpful. But when I’m there it gets to the point where I’ve had enough and I can’t wait to go.

Like you I take stuff in. A banana, look at pictures on my iPad, a yogurt, a box of little memories she can pick up. And I offer help to the staff if I can but our blame culture makes them nervous. And each visit is the same and I feel a sense of duty, responsibility,
shame ( yes!!) when I duck out of seeing her.

So today I won’t go and it will be tinged with being a little uncomfortable knowing I’ve “ let her down” and I imagine her there constantly staring out the window and I wonder what goes through her mind. I just hope she gets some peace.

 

[Valpiana]

If only we could know what goes on in their minds it would make the decisions about how often and how long to visit much easier. I have cut back on the length of time I am there as it's very difficult to engage my husband in anything. On the plus side I recently had a holiday and me not visiting for a week had the same response as going every day,he is totally unaware of time and forgets I have been moments after I leave. Luckily he is always happy to see me.

 

[Thethirdmrsc]

Hi @Thethirdmrsc
I’m sitting here thinking about shall I or shall I not visit today when I came across your post.

For me it’s so confusing because it’s always a mixture of feelings of abandonment and desertion mixed with I know she’ll be alright and cared for without me. Then I think “ what do I get out of it?” and it’s not a lot apart from smiles, the odd giggle and the feeling I’m doing something a little worthwhile and helpful. But when I’m there it gets to the point where I’ve had enough and I can’t wait to go.

Like you I take stuff in. A banana, look at pictures on my iPad, a yogurt, a box of little memories she can pick up. And I offer help to the staff if I can but our blame culture makes them nervous. And each visit is the same and I feel a sense of duty, responsibility,
shame ( yes!!) when I duck out of seeing her.

So today I won’t go and it will be tinged with being a little uncomfortable knowing I’ve “ let her down” and I imagine her there constantly staring out the window and I wonder what goes through her mind. I just hope she gets some peace.

Hi Peter, like caring, the care home situation is one you cannot imagine until it happens to you, and people say to me, as they do to you that you can’t feel guilty, but I do, and it is in my head all the time. I have a routine when I’m there. Get there at 2, coffee is at 2.30, evening meal starts at 4.30 which I help him with, and I then tell him I’m away to feed the dog etc by 5.15. My 2 jobs and everything I do still revolves around him.

 

[Marler19]

All of this resonates with me.

I went to visit my mother at her care home today and she talked quite cheerfully non-stop for 90 minutes, making very little sense at all.

I try to join in the conversation and we smile and laugh at times, she does know I am someone she loves and I love bringing in treats for her etc, but I feel this overwhelming feeling of sadness that this once independent and highly intelligent woman is now someone whose conversation I can’t understand at all. I have lost her, yet she’s still there. She always wants me to take her out or wants to come home with me, so I find the end of visits incredibly sad and upsetting. But I carry on going. She’s been in the home for a year, it is a very good one and she’s as content as she can be, and I know it’s the best possible scenario, but it still feels at times incredibly hard. We are all doing our best.

 

[Georgie2022]

Hello I am new to the forum and have a dad with advanced dementia in a care home. Found my visit so hard today as it was heartbreaking watching my mum trying to interact with him and asking him to remember huge chuncks of his life. I feel so sad for her and know she will have a difficult time after the visit. We don't go too often as it is a long way but he is never far from my thoughts. Any other sons or daughters on here feel the same? It's like we are in limbo waiting for the inevitable to happen. He is able to give us a hug but that's about all. The visits are mostly with him sleeping now although he is mobile but getting frail. Would like to chat to some new friends going through this too x x

 

[Louise7]

Hello @Georgie2022 , and welcome to dementia talking point You'll find lots of friendly support here from others who have been, or are in, the same position. My mum is in a care home and quite advanced so visits can be difficult now as there isn't much interaction although she does still smile and laugh sometimes and enjoys listening to music, although she pulls a face if I try singing along! I find that visits tend to be a bit better during the summer months as we can go out into the garden, which mum enjoys. I can see how your mum asking your dad to remember huge chunks of his life is hard for you to watch. Maybe putting some music on for your dad, perhaps songs that mean something to them both, would help with the interaction? It's difficult at this stage but myself and my sister make the best of the visits whilst we can, and I'm sure that your mum and your dad appreciate your visits and support too. Sometimes just the little things like a smile or a hug makes a visit seem worthwhile.

 

[My Mum's Daughter]

My visits to Mum are having a negative affect on both of us so I'm going to cut back and back.

She no longer recognises me as her daughter but seeing me triggers something in her confused brain, that makes her realise that she's not in her own home.

Visits are painful for both of us; we've become two strangers bound by genetics and if she had the capacity to understand, she'd hate what she's become. It's very sad but for my own wellbeing, I've had to disconnect.

 

[Violet Jane]

I used to dread visiting my mother in the later stages of her dementia. I would have to psych myself up before each visit and if I could find an excuse not to go (e.g. I have a slight cold) I’d put the visit off. Each time it was a shock to see what she had become. It was a 90 minute plus round trip and quite often she’d be asleep most of the time I was there. I only managed an hour and would often spend a large chunk of that talking to the carers. I would chat away but my mother would not respond. I’m not sure that she recognised me. Towards the end she didn’t even smile, at least not to me. I would hold her hand but, invariably, she would fall asleep again.

Personally, I doubt that my mother got anything out of the visits in the later stages but I felt that out of duty and love I should go on visiting. I also felt that it was important to show the carers that someone was taking an interest in my mother’s wellbeing and to acknowledge the care that they were providing to my mother.

I think that each person has to make his/her own decision about how often to visit and how long to stay. It’s very individual.

 

[Dutchman]

As I’ve said before visiting for me is a mixture of , I need to, duty, lessening the feel that I’ve abandoned her and keeping my love going for a person I’ve known for the past 30 years.

On the way there I feel nervous and when I get there I wonder why I felt that way as usually we have a restful time together. When I leave I feel I’m abandoning her. But my counsellor explained that it would unusual if I didn’t feel this way. You’re going to see the one you love in a strange environment. She’s a vulnerable person looked after by strangers and you’re not in control any more. Just be kinder to yourself

 

[Snuffette]

This is so strange, I was going to post yesterday on exactly the same subject! Mum doesn't really speak now and I am sure she doesn't know who I am - she has deteriorated so much since the last infection and fall (in a wheelchair now almost all day). I have to psych myself up and then spend the time with her chatting away but not getting any response. Blinking awful.

 

[ColBert]

I've just registered on here and can relate to much of what is being said in this thread. My mum is in a care home in Edinburgh but I live in Lancashire so I don't get to see her very often. Things have been made more complicated with Covid recently as I came down with it after visiting mum at the end of May.

I was there last week and it was not an easy visit. Her dementia seems to be getting worse and this was the first visit where I'm not sure if she knew who I was. I did get a reaction when I mentioned my sister but she was mostly staring off into the middle distance. She just looked puzzled much of the time when I was talking to her. I stayed for about half an hour and then had to leave. It's just heartbreaking.

On the plus side the staff always have good things to say about how she's doing and they say she does speak occasionally to them. I suppose the reality is that the staff and other residents are her world now as they are the ones she is seeing every day.

 

[Izzy]

Welcome to the forum @ColBert.

 

[Jaded'n'faded]

I used to dread visiting my mother in the later stages of her dementia. I would have to psych myself up before each visit and if I could find an excuse not to go (e.g. I have a slight cold) I’d put the visit off. Each time it was a shock to see what she had become. It was a 90 minute plus round trip and quite often she’d be asleep most of the time I was there. I only managed an hour and would often spend a large chunk of that talking to the carers. I would chat away but my mother would not respond. I’m not sure that she recognised me. Towards the end she didn’t even smile, at least not to me. I would hold her hand but, invariably, she would fall asleep again.

Personally, I doubt that my mother got anything out of the visits in the later stages but I felt that out of duty and love I should go on visiting. I also felt that it was important to show the carers that someone was taking an interest in my mother’s wellbeing and to acknowledge the care that they were providing to my mother.

I think that each person has to make his/her own decision about how often to visit and how long to stay. It’s very individual.

There's an old thread of mine in the archives somewhere entitled: It's Monday and I don't want to go!

Honestly, you are not alone. Visiting can become very difficult in the later stages. My mum had lost me as her daughter but did still recognise me as someone she knew. Her reaction when she saw me was my clue to her mood on any particular day. If she smiled - phew - that was OK and the visit could go ahead. It was always in her room (which she rarely left) and revolved around the chocolate I had brought her and whatever books/newspapers were lying around. I really didn't know what to say to her. We weren't close and she was a difficult person even before dementia. When she got delusional, the bedroom window was my saviour! I lost count of the number of times I said, 'Oooh! Is that a pigeon?' (Probably far less than the number of times she said to me, 'So did you have a nice Christmas? All... year... round... Several times per visit ) But like others, I felt it was my duty as a daughter, it gave me a chance to check on the care she was getting and if I didn't go I felt horribly guilty.

But sometimes when she saw me she would instantly turn feral. I could see the rage in her face and she'd bare her teeth and actually growl at me. On such occasions I knew she was getting into rant mode and I would be accused of everything under the sun. After a couple of these visits I realised it was pointless to continue and would turn tail and run home.

 

[Snuffette]

There's an old thread of mine in the archives somewhere entitled: It's Monday and I don't want to go!

Honestly, you are not alone. Visiting can become very difficult in the later stages. My mum had lost me as her daughter but did still recognise me as someone she knew. Her reaction when she saw me was my clue to her mood on any particular day. If she smiled - phew - that was OK and the visit could go ahead. It was always in her room (which she rarely left) and revolved around the chocolate I had brought her and whatever books/newspapers were lying around. I really didn't know what to say to her. We weren't close and she was a difficult person even before dementia. When she got delusional, the bedroom window was my saviour! I lost count of the number of times I said, 'Oooh! Is that a pigeon?' (Probably far less than the number of times she said to me, 'So did you have a nice Christmas? All... year... round... Several times per visit ) But like others, I felt it was my duty as a daughter, it gave me a chance to check on the care she was getting and if I didn't go I felt horribly guilty.

But sometimes when she saw me she would instantly turn feral. I could see the rage in her face and she'd bare her teeth and actually growl at me. On such occasions I knew she was getting into rant mode and I would be accused of everything under the sun. After a couple of these visits I realised it was pointless to continue and would turn tail and run home.

The window made me laugh lol When I visit mum I put on cute dog and puppy clips on YouTube. I swear if I never hear that music again it will be too soon ?