Why is visiting so hard?

[Lavender45]

Mum mum is in a secure unit under a section 3 at the moment and all being well she will be able to go into a care home soon.

My problem is with visiting, which sounds awful, but I'm quite literally forcing myself to go in.

At the moment I go in every other day, my cousin goes in once a week and my sister cannot face going in at all. The unit is not great and would in my honest opinion be worse but for the fact that I keep a close she on mum's welfare and am vocal when things are wrong.

I feel like I should want to be there, I should want to spend time with mum after all she's deteriorated to this point pretty fast so who knows how long we've got, but I don't feel these things, what I feel is oh God I have to go in there today. I was staying around 2 hours per visit, I have cut this down to about an hour and a half leaving when she sits down for her evening meal. On the way home I am exhausted. How can sitting there or following mum walking around the coridoors be so tiring and how can I get past my reluctance to be there at all?

 

[Lorna44]

My mum has been in a nursing home since May last year, and it's a lovely place, bright, airy, well decorated and most importantly Mum is well looked after and my mind knows it's the best place for her..... but I hate visiting her.....why? Well you never know how she's going to be, nice or nasty.... and that's hard. Also although my mind knows it's the best place, my heart misses my old mum, the lovely, brilliant mum that she was.... visiting her reminds me of what I, my kids and my family have been robbed of & I hate that. Lavender I have followed your thread and I have always been struck how you have fought & done so much for your Mum, and what a great daughter you have been.
It's so hard to see them change so much from what we've always known, don't be so hard on yourself.... hugs to you
Lorna xx

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[Shedrech]

hi Lavender45
no answers really, just recognition
dad's living in a care home, been there almost 2 years now - I visit 3/4 times a week - it's a pleasant enough home and the staff are lovely
sometimes I just cannot do it - I just cannot visit - so I accept that I matter too, that my dad is safe, that the staff will contact me if necessary, that dad will not really be aware whether I've been or not - and I give myself permission to stay away
I've done this today - I went in on Thursday, Friday and yesterday - I just can't go more - I find if I do this sometimes, I'm less reluctant when I feel up to a visit as I've had a break
I agree with Lorna44, don't be hard on yourself - you are doing all you can; that's enough
best wishes

 

[Slugsta]

Hi Lavender,

I think it is good to acknowledge how you feel - after all, your well-being is as important as that of your mother!

My Mum has recently gone into a Care Home and I find visiting difficult. Sitting there with someone who has little speech is boring, I am usually physically uncomfortable (Mum likes to hold both my hands which usually results in me being in a difficult position) - and that's before we start to consider the emotional issue. I think you are doing really well!

 

[Tin]

Hi Lavender,

Can only imagine how you must be feeling, visiting your mother in a secure unit must be hard and emotional draining, a kind of hospital ward, but not quite? These feelings you have may improve when she takes up residence in a care home. Has there been improvement for your mum? that is have they sorted out medication yet?

 

[Georgina63]

I think there are many who will understand. When mum and dad were at home I used to dread the phone ringing, or going round to deal with the latest crisis, and quite often not wanting to go. Now they are in a care home and sometimes (who am I kidding, a lot of the time), visiting is hard. I was going every other day (3-4 times a week) and I've cut this down to 2-3. I just couldn't cope with more.

I've been catching up on some of your threads especially re medication as Dad has recently been violent and is now on extra medication. I'm finding that very hard and want to visit less, fearful of what I might find. I think it's OK to visit less, knowing your Mum is well looked after and when you feel strong and more able you can visit more if you want. It is tiring. The stress of the situation contributes to that and it is stressful! Can you take some time out and just recover a little? Your mum will still be ok if yiu cut down your visits.

Sorry, not sure that I've been much help, but I do understand the feeling, and I hope you can give yourself time and that it will get better. Sending wishes. Georgina X

 

[Raggedrobin]

Hi Lavender
You have my sympathy too. I guess part of it is that the person you are visiting is not the person who was, so there is a kind of grief attached to seeing them, plus I agree with other posters, for me, I am not sure how Mum will be on a given day and hate the uncertainty.

Some days I will find any excuse to delay going in, sometimes for hours. When she was first in I went pretty much every day but when you get to the point where you just don't want to do it I think that it is a good idea to cut down both the amount you visit and the times. I do feel that people do seem to really benefit from seeing their nearest and dearest but you do also have to be aware of the toll it takes on you. I find a gloom can sit like a cloud over me some days before and after visiting and I know that isn't good for me.

One thing I have found that has helped me is to have some little thing to do while I am there. i now take in sewing and sew away, all sorts of ridiculous bits of embroidery. My mother used to like to talk in long monologues which only required one to make a noise every now and then to indicate you were listening, plus a few salient comments. I found the boredom of this would drive me nuts but doing the sewing keeps me from going mad.

Also of course if your mum is at a point where she can do things, doing activities like showing photos and stuff is good but my Mum got past that phase quite quickly.

I really do know how hard it is, it is a question of finding a compromise where you go in an amount that is bearable for you.

 

[LadyA]

Lavender, cut yourself some slack, woman!

It's exhausting, because (at least I found it so when visiting William) it's very warm? There are lots of people sitting dozing off? Zzzz! You just saw your mum and spent 1 1/2 hours sitting with her (or walking around with her) the day before yesterday, and it's the same routine today?

If you are visiting every other day - and I did too, at least, and sometimes every day - then I would just make it a short visit most of the time. Even half an hour, just to check on your mum, have a quick visit, and leave. I found that the longer I spent with William, the more reluctant he was for me to leave. When I was popping in and out regularly, for short visits, he became convinced that I was always there, somewhere around the building! (I made a point never to bring my bag or coat in with me - just wandered in in indoor clothes). As William deteriorated, as soon as I got there, he would want to take me to his room, and he would turn on the tv, and then he'd go for a lie down, and sleep for up to two hours - so I'd stay for an hour or so, watching tv or reading, and then slip out.

It's finding what works for you, and is sustainable. As Slugsta said, your well-being is important too.

 

[Kevinl]

Secure units under a section 3 are there own type of hell on earth for some, my wife spend 6-7 months on one and the level of aggression in there was another dimension compared to anything else. Some guy got his hands round my neck I was kicked, slapped and generally hit more than I care to remember, one resident broke my wife's wrist by "pushing her over" so I do know what it's like.
Now she's moved on to EMI nursing it's much better as in they don't take most of the ones with aggressive issues, just a couple.
Mad as it may sound you just have to "embrace" the place and to use modern parlance "own it" I doubt there is anyone in the home where my wife is who's name I don't know, from the domestics to the manager, all of the residents and all of the staff.
I don't visit (like some) who stay in the resident's room or when in a secure unit the "interview" rooms, I just go out and join in as they say on here "I have to live in her world because she can't live in mine" and her world is where she is with the people that live there too so don't hide away, join in.
K

 

[angecmc]

Hi, be kind to yourself, you are not a bad person. Most of us don't like visiting our loved ones in the care home situation. I used to feel the same as you, anxiety would kick in as I approached the care home. I'm not so bad now as I have been on antidepressants and have done cognitive behaviour therapy, which really helped me. The key is to try not to anticipate what situation you think you will find because you start off with a negative attitude. I would also say there is nothing wrong in making your visits shorter. I have been known to only stay for 10 minutes on occasions, especially if it is turning into a challenging visit. I also have learned that as I leave, I find something positive about the visit, such as Mum looked nice today, or was peaceful today. Of course it's not always easy, it takes a bit of practice. Take care of yourself and remember it's not wrong to put yourself and your feelings first occasionally xx

Ange

 

[memyselfandi]

Visiting the People We Love in Continued Care Facilities

Hi, be kind to yourself, you are not a bad person. Most of us don't like visiting our loved ones in the care home situation. I used to feel the same as you, anxiety would kick in as I approached the care home. I'm not so bad now as I have been on antidepressants and have done cognitive behaviour therapy, which really helped me. The key is to try not to anticipate what situation you think you will find because you start off with a negative attitude. I would also say there is nothing wrong in making your visits shorter. I have been known to only stay for 10 minutes on occasions, especially if it is turning into a challenging visit. I also have learned that as I leave, I find something positive about the visit, such as Mum looked nice today, or was peaceful today. Of course it's not always easy, it takes a bit of practice. Take care of yourself and remember it's not wrong to put yourself and your feelings first occasionally xx

Ange

I love going to visit my dad, who has medium to advanced Vascular Dementia. It's difficult at times because most of the time he's either sitting in his wheelchair, or he's in bed. I used to just go in for a quick visit as he often didn't communicate, but even without him communicating, I knew that somehow, he knew I was there.

Short visits turned into longer ones where I just sit with him if he's in his wheelchair; and pull up a chair to sit next to him, maybe just watching tv. He often reaches out for my hand and we just sit together like that. I'm realizing that the longer period of time I stay, the more he warms up to me; as much of his dementia is cognitive and it takes him a bit.

The last time I was there, he was in bed and I on the edge of his bed for a bit; not getting any reaction but him just staring straight ahead; but I stayed anyway talking to him and telling him that I love him. Shortly after that, the ladies from his church came to visit and again, he didn't respond to them so they were going to leave. Then one of them said, "Would you like to take Communion" and he shook his head yes. I saw him up in his bed and he took the bread and wine all by himself. He also said the Lord's Prayer with every word correct loud and clear. When the ladies were leaving, he said, "Thank you." several times, so he knew what they were saying. Sometimes he plays "possum" with me just because he just doesn't feel like talking.

The help tells me that he communicates when he feels like it and it's sort of a day to day thing. When my sister came to visit a few months ago, we had the Family Room reserved and before the rest of my family got there, my dad said, "Thank you for this.."

While my sister and her family were there, my dad was very alert, his nurse came in to help him eat, etc. My sister sat with him, showing him family pictures and although it took him a bit, he was remembering people. When his nurse came in later to see if he wanted to take a nap, his reply was, "Why would I want to do that? I have company."

He gets tired at times and sits with his head down, but he's aware of what's going on around him. We had set his birthday present next to his wheelchair while he was sleeping and as we were all talking amongst ourselves later on, I noticed that Dad had reached down for his gift and was opening it on his own. All the grandkids went over to sit next to him and he talked to each one of them, remembering them.

Later on we decided to sing all the old family songs Dad had taught us when we were young, and Dad sang right along with us.

What a beautiful day it was!!

 

[Bod]

Mum mum is in a secure unit under a section 3 at the moment and all being well she will be able to go into a care home soon.

My problem is with visiting, which sounds awful, but I'm quite literally forcing myself to go in.

At the moment I go in every other day, my cousin goes in once a week and my sister cannot face going in at all. The unit is not great and would in my honest opinion be worse but for the fact that I keep a close she on mum's welfare and am vocal when things are wrong.

I feel like I should want to be there, I should want to spend time with mum after all she's deteriorated to this point pretty fast so who knows how long we've got, but I don't feel these things, what I feel is oh God I have to go in there today. I was staying around 2 hours per visit, I have cut this down to about an hour and a half leaving when she sits down for her evening meal. On the way home I am exhausted. How can sitting there or following mum walking around the coridoors be so tiring and how can I get past my reluctance to be there at all?

Keep your visits, short and sweet.
Do your checking, talk to the staff, once mums had enough, then you leave.
This may be as short as half an hour. Judge on the day.

Bod

 

[Blackcat20]

I feel for you and can understand your situation, as my Mum with Alzheimer's spent two months in a mental health secure unit after sectioning, then another two months in a community hospital before being admitted to a dementia unit in a care home. I found the visiting to the secure unit by far the most challenging, as some of the other patients had very complex needs and the unit (although brand new and well designed) felt quite a scary place to be in. My Mum was terrified all the time, as she was there only because she had flatly refused to see any medical staff or to receive any care services in her home, and had to be sectioned so that she could be treated and given a diagnosis. Once your mother moves to a care home, you may well find the visiting much easier, as the atmosphere will be more homely and relaxed.

As others has said, the strategy is to keep the visits very short so that you don't burn out emotionally. I used to visit for 20-30 minutes, and have a set plan of simple things to do that lasted just a few minutes each and I knew Mum would enjoy. Normally l'd bring a treat (my Mum's favourite icecream or a homemade cake) to share, then we'd look at some photos or some funny YouTube videos on my tablet, listen to a couple of her favourite songs and tend a few plants I had been allowed to bring in (I would water them and we would talk a bit about how they were doing). I brought her a pretty little diary and before I left I would write in it just one thing we had enjoyed doing that day (e.g. I'm so glad you liked the chocolate cake, and I'll bring you another one soon). Other visitors did the same, and Mum used to keep the diary open beside her and look at it all the time. It helped her to remember that she had had a visitor and that something nice had happened, as otherwise she felt that she was in "prison" and nobody ever came to see her. I always left as she was about to go to a meal, and put a little surprise in her room so that she had something waiting for her when she got back - maybe a magazine, or a few grapes, or a tiny tube of hand cream. The staff would say "oh look what you daughter has left for you", and apparently this helped to settle her back in her room.

It helped me to remember that my Mum really needed to be in the assessment centre to get a proper diagnosis/treatment, and that it was not for ever. I found that staff were keen for patients to move on as quickly as possible into a lower level of permanent care, which hopefully will happen soon for you too.

 

[Marcelle123]

My mother is in a dementia home very near me. It's the best place for her since she was getting very unhappy at home, on her own every night, and it wasn't safe either as she has no understanding of risk.

But I hate visiting her there - just as I hate not visiting her.

I hate visiting her because I never know what I'll find. Is she in the middle of a bad day, having spent the morning shouting out, or being upset about other residents, or in a repeated loop about how her head is 'useless' and she'd be better off dead? Or will it be a happy peaceful time as we sit with our cups of tea and look out of the window at the seagulls flying past? My stomach lurches and I groan, often audibly, as I use the card to enter the building.

I hate visiting her because I see how she's deteriorated, and because I feel embarrassed at finding her asleep in other people's beds, or because I'm worried that the chiropodist didn't visit her last time and her nails are far too long, or because I'm worried that her complaints of dizziness may not be about her mood but be real, based on the side effects of memantine.

I hate visiting her because although I know it's the best place for her, I can't help revisiting and reviewing my decision again and again, when I see her in the midst of other residents with dementia who sometimes are hostile and sometimes talk to my mother without making any sense and I can see it disturbs her.

I hate not visiting her because I spend the whole time wondering what she's doing and if she's all right and feeling guilty for not visiting her and bad about taking some time for myself. Every time the phone rings, I'm worried that it's the care home to report an 'incident' or other difficulty. When I come back home after going out, I'm so relieved if there have been no calls.

I wonder - will I ever get used to this situation? When I wake in the small hours, will I go on tossing and turning for a couple of hours mulling it all over, or will I one day be able to shrug it off, roll over, and drop off again?

 

[Georgina63]

I wonder - will I ever get used to this situation? When I wake in the small hours, will I go on tossing and turning for a couple of hours mulling it all over, or will I one day be able to shrug it off, roll over, and drop off again?

Sounds very like my Mum Marcelle123, and how I feel. In answer to your final question, I certainly do hope so. Wishes Gx

 

[angecmc]

I love going to visit my dad, who has medium to advanced Vascular Dementia. It's difficult at times because most of the time he's either sitting in his wheelchair, or he's in bed. I used to just go in for a quick visit as he often didn't communicate, but even without him communicating, I knew that somehow, he knew I was there.

Short visits turned into longer ones where I just sit with him if he's in his wheelchair; and pull up a chair to sit next to him, maybe just watching tv. He often reaches out for my hand and we just sit together like that. I'm realizing that the longer period of time I stay, the more he warms up to me; as much of his dementia is cognitive and it takes him a bit.

The last time I was there, he was in bed and I on the edge of his bed for a bit; not getting any reaction but him just staring straight ahead; but I stayed anyway talking to him and telling him that I love him. Shortly after that, the ladies from his church came to visit and again, he didn't respond to them so they were going to leave. Then one of them said, "Would you like to take Communion" and he shook his head yes. I saw him up in his bed and he took the bread and wine all by himself. He also said the Lord's Prayer with every word correct loud and clear. When the ladies were leaving, he said, "Thank you." several times, so he knew what they were saying. Sometimes he plays "possum" with me just because he just doesn't feel like talking.

The help tells me that he communicates when he feels like it and it's sort of a day to day thing. When my sister came to visit a few months ago, we had the Family Room reserved and before the rest of my family got there, my dad said, "Thank you for this.."

While my sister and her family were there, my dad was very alert, his nurse came in to help him eat, etc. My sister sat with him, showing him family pictures and although it took him a bit, he was remembering people. When his nurse came in later to see if he wanted to take a nap, his reply was, "Why would I want to do that? I have company."

He gets tired at times and sits with his head down, but he's aware of what's going on around him. We had set his birthday present next to his wheelchair while he was sleeping and as we were all talking amongst ourselves later on, I noticed that Dad had reached down for his gift and was opening it on his own. All the grandkids went over to sit next to him and he talked to each one of them, remembering them.

Later on we decided to sing all the old family songs Dad had taught us when we were young, and Dad sang right along with us.

What a beautiful day it was!!

I am glad you have managed some wonderful visits with your Dad, you must treasure those moments, sadly for my Mum those times are long gone, but I will never give up on her, like you say there are occasionally brief times when we get just a little bit more from Mum, but they are very rare. I take a magazine or paper in with me and try to involve Mum In articles I find. Mum has Lewy bodies dementia and when she is angry, there us no calming her now, we used to be able to sing with her to calm her, but even that doesn't work these days. Thankfully, we do still get some very pleasant times, it's just the progression of dementia, sadly each sufferer is very different, as they say "if you've seen a person with dementia, you've seen one person with dementia." It is finding a solution for your personal situation that feels right for you and nobody should feel guilty if they can't always visit. Xx

Ange

 

[saskia]

My mother is in a dementia home very near me. It's the best place for her since she was getting very unhappy at home, on her own every night, and it wasn't safe either as she has no understanding of risk.

But I hate visiting her there - just as I hate not visiting her.

I hate visiting her because I never know what I'll find. Is she in the middle of a bad day, having spent the morning shouting out, or being upset about other residents, or in a repeated loop about how her head is 'useless' and she'd be better off dead? Or will it be a happy peaceful time as we sit with our cups of tea and look out of the window at the seagulls flying past? My stomach lurches and I groan, often audibly, as I use the card to enter the building.

I hate visiting her because I see how she's deteriorated, and because I feel embarrassed at finding her asleep in other people's beds, or because I'm worried that the chiropodist didn't visit her last time and her nails are far too long, or because I'm worried that her complaints of dizziness may not be about her mood but be real, based on the side effects of memantine.

I hate visiting her because although I know it's the best place for her, I can't help revisiting and reviewing my decision again and again, when I see her in the midst of other residents with dementia who sometimes are hostile and sometimes talk to my mother without making any sense and I can see it disturbs her.

I hate not visiting her because I spend the whole time wondering what she's doing and if she's all right and feeling guilty for not visiting her and bad about taking some time for myself. Every time the phone rings, I'm worried that it's the care home to report an 'incident' or other difficulty. When I come back home after going out, I'm so relieved if there have been no calls.

I wonder - will I ever get used to this situation? When I wake in the small hours, will I go on tossing and turning for a couple of hours mulling it all over, or will I one day be able to shrug it off, roll over, and drop off again?

Marcelle

i have just read this & all the posts & you have summed up exactly how i feel.

My mum is in a secure unit -she hates it
we are only allowed to visit twice a week at the moment & each time I hate it!

hate seeing mum so distressed
hate the way i feel - guilty / sad

i too also can't sleep as stress about her clothes / how sad she is / is she eating properly - i can't have a glass of wine at the mo - as mum loves a glass & it makes me feel so ridicously guilty for enjoying it!

& then selfishley - finding i have 'time' on my hands - not stressing about the phone ringing all hours - i can actually go to bed & enjoy a book.

Am going today to visit with my brother - - i know it will be ''when can i come home' and then tears.

The idea of leaving little presents is a good one, in theory - left mum with a lovely pic of her & dad - she promptly threw it accross the room and said '' don't need that, i'll be at home tonight''

sas
x

 

[Jennylizfuller]

Sending hugs with you all the way, in the same situation as you we my brother can't visit very near the edge so it's me that goes. Contact your local carers association for support I did they have been fantastic
Even if it's just to vent how you feel
Hugs again


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[lemonjuice]

My problem is with visiting, which sounds awful, but I'm quite literally forcing myself to go in.

. . At the moment I go in every other day, my cousin goes in once a week and my sister cannot face going in at all.
. . . .
I feel like I should want to be there, I should want to spend time with mum after all she's deteriorated to this point pretty fast so who knows how long we've got, but I don't feel these things, what I feel is oh God I have to go in there today. I was staying around 2 hours per visit, I have cut this down to about an hour and a half leaving when she sits down for her evening meal. On the way home I am exhausted. How can sitting there or following mum walking around the corridoors be so tiring and how can I get past my reluctance to be there at all?

So been there and like Shedrech

sometimes I just cannot do it - I just cannot visit - so I accept that I matter too, that my dad is safe, that the staff will contact me if necessary, that dad will not really be aware whether I've been or not - and I give myself permission to stay away

and Bod

sometimes I just cannot do it - I just cannot visit - so I accept that I matter too, that my dad is safe, that the staff will contact me if necessary, that dad will not really be aware whether I've been or not - and I give myself permission to stay away

and Marcelle

. . .
But I hate visiting her there - just as I hate not visiting her.
. . .
I wonder - will I ever get used to this situation? When I wake in the small hours, will I go on tossing and turning for a couple of hours mulling it all over, or will I one day be able to shrug it off, roll over, and drop off again?

My mother has been 5 years in the NH now. She has been unhappy ever since she went there. I always used to get tears on my (regular in those days) visits but for the past 3 years I get no response at all, positive or negative, just apathy and visits are very short and more to check in with the Home as it breaks my heart every time to see my mother like she is. I still wake up in the middle of the night before a visit dreading the day before me and for a couple of days after I stay affected.

I sometimes refer to it as like visiting a grave. The body is there, but unable to take part in life or interact with 'today' in any way.

 

[Witzend]

I do so sympathise. During her first weeks and months at the CH, I would often dread visiting my mother, would have to psych myself up to go, and my stomach would be in knots. And then I'd feel terrible for dreading visiting my own mother. For a long time there was no conversation except, 'I want to go home! Have you come to take me home?' In the early weeks she would be angry, too, and accuse me of siblings of putting her there so we could steal her money. I did once in desperation tell her how much the CH was costing - if we'd just wanted her money we'd have left her at home, but I knew she'd forget anything I said within a minute or less.
The mere idea of the often recommended 'distraction' was a joke - she went back to it endlessly, like a wasp to a jam jar.

After a while I became very inventive at 'love lies' that more or less worked in our circumstances - they were the only way.

Sad to say, this 'loop' only really stopped altogether after she ceased to recognise me, which happened quite suddenly. One week her eyes would light up when she saw me, the next they were just blank - I was just a 'nice lady' who made her cups of tea and brought her chocolate.
Visits did become easier, but it was a very bittersweet change to say the least.