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Coping with visiting Mum

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KimboBrum

Registered User
Jan 10, 2016
1
Visiting my dad

I visit dad every day (two years) because the care home 'care' is questionable. Mom and I now only suffer the same symptoms as yourself when dad has a bad day. Sadly they are getting more frequent now, and all you can do is say to yourself that your mom would want you to look after yourself, and we are all bad at that? We cherish the good days and come away feeling happier, still sad because we still feel it isn't where dad should be - we feel guilty that we are unable to have him home with us. The one blessing you have to hang on to is that your mom is being fed, cared for and hopefully loved in her care home?
 
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Mercuria

Registered User
May 7, 2014
24
I've just joined this forum. I've been caring for my mum from a distance (I live in France) for several years now, visiting once a month, and we're getting to the point where she needs either full-time, live-in care, or to go into a home, and I'm finding it very distressing and stressful, feeling like I'm betraying her. I also have a 2-year-old and work, so life is rather busy (feel I have no time to deal with all the emotions). Just wanted to say that it's done me good reading your posts, I no longer feel so alone.
Welcome, Mumpkin, I'm glad you find the posts helpful and feel less alone! And welcome to Kimbohudsin.

I totally recognize the feeling of betrayal. The first time I had Social Services round to do an assessment, when they turned up, the feeling that I shouldn't be doing this and talking to them kicked in so strongly, I found myself actually minimizing the problems and they went away saying they saw no need for action. I kicked myself for this for a long time afterwards. The second time was months later, by which time I'd reached burnout and I just told them everything.

For months the feeling of "double perspective" was really difficult to handle as I was still partly seeing my mother as she had always been, as the familiar adult who could cope, and I was half expecting her to come to her senses and demand indignantly to know what on earth I thought I was doing. But along with this there was also the perception of her as she currently was, as a personality emerging that I didn't know and whose reactions weren't predictable. I suppose there was an element of denial in that I didn't want to believe that this really was dementia but as she deteriorated, and I looked back on the decisions I made, I found they could not have been otherwise. You'll probably find that too.

It is very difficult and you have my sympathy. I don't think the guilt ever quite goes away. You have to shut your eyes to it sometimes. For me one of the hard things is going out for an evening - I know my mother isn't happy and it feels wrong to be enjoying myself when she isn't, but I can't live her life and you have to have a break now and again.
 

jj1

Registered User
Nov 26, 2012
13
Mum's been in a wonderful specialist dementia care home for 2 years now, after struggling at home with dementia for several years. It's a 6 hour drive from my home, so I visit every 2 - 3 months. Since the time she moved to the home she hasn't recognised me. Her speech is deteriorating gradually so that now she is using made up words for about one in six words ("Well they said they wommed the golshy but I know they really wanted a beng thing"...). It's increasingly hard to get her to talk at all (I NEVER imagined I would find myself saying that!!!)

After the massive, relentless stress of being a long distance carer for so long, the first year of visits were joyful - I was so relieved to be able to just talk, listen, and hold hands without worrying about life-threatening risks all the time. But increasingly I'm finding that I have a huge emotional 'crash' after every visit, feeling like I've been suddenly dropped into the most intense phase of grieving. It passes in a day or two, but leaves me washed out for several weeks.

My question is: what practical things do other people do to manage this? I try to arrange visits to other family members with small children, and make sure the night after my visit I stay at a hotel or B&B so I don't feel I have to socialise if I don't feel like it, but still end up feeling like I've been punched in the face.

All suggestions welcome! Thank you :)
I'm going threw with similar feelings to you.my mums now been CH since jan 2013
.she is not far from my home which is handy.but everytime I visit I feel same as you.i know its daft but I feel guilty when I leave her.usualy feel like this for a few days.she dosent know I'm her son anymore or remember her dog who still lives with us.im finding I tend to go less often now but stay longer when I visit
 

Lulu

Registered User
Nov 28, 2004
391
Thankyou for this thread, which has 'hit home' with me. Have seen my own mum today which always entails long drives, knowledge of the best places to get a quick sandwich, lay bys in which to eat them ......and having to carry on having visited my lovely Mum, dealing with the fallout, trying to carry on with life.
All of you know what this is like - but otherwise people don't understand.It can be very lonely.
 

jj1

Registered User
Nov 26, 2012
13
Thankyou for this thread, which has 'hit home' with me. Have seen my own mum today which always entails long drives, knowledge of the best places to get a quick sandwich, lay bys in which to eat them ......and having to carry on having visited my lovely Mum, dealing with the fallout, trying to carry on with life.
All of you know what this is like - but otherwise people don't understand.It can be very lonely.
yes ive also been and seen my mum today.she seems well al things considering.dont think she has a clue who I am now.do you find the long drive back gives you a chance to unwind and take the days events in tho? regs john
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Lulu, yes, it can be very lonely at times. I often feel lonely and/or isolated, by the dementia, if that makes any sense. As if, I'm living on Planet Dementia and don't speak the same language and just can't relate to people with their "normal" lives.

I think this is where TP, as well as carer's cafes and support groups, can be so helpful: knowing there will be people here, who understand. Something about being able to express yourself to others who understand can make all the difference.
 

lacey1962

Registered User
Jan 9, 2016
41
Crawley
visiting care home

Hi,

My father is 91 and been in a care home for nearly 4 years, my sister visits weekly as she lives quite near. I have my mother 87 now living with me for over a year now after falling and breaking her shoulder, elbow and hip. I Have now started noticing that she has all the signs that my father had at the begining. I have just booked her an appointment into the memory clinic.

My mother and I hate visiting my poor father , it is so stressful it takes me days to get over the visit, I am totally drained and feel washed out. He is so unhappy and all he wants is to go home where they lived together for 53 years. I am on the verge of selling their home as my mother hopefully will be able to move to somewhere very near me with supervision once she is fully recovered from her broken bones.

I am finding everything very stressful, we have just lost another family member, my new husbands family all hate me, my poor sister lost her only child aged 26 and is in no fit state to do anything.
I feel very sorry for all the poor sufferers of this dreadful disease, there seems to be no end to it. Does anyone know if caught early would medication really help?
Thanks
 

Torontonian

Registered User
Jan 29, 2014
57
Toronto, Ontario CANADA
Count me in on this conversation too please.

It's been less than a year, this is my mom's third nursing home. I took her out of the first home just after 3 days. She fell on day 2 so I said no this is not the right place as they kept
calling me to come and put her to sleep etc. Fast forward 10 months which she was with me mostly and spent some days with my brother, another home became available in December so we said this is it and moved her in. Mom does not recognize us or home and every evening we all go out looking for her parents who are long, long gone (mom's 90) and looking for her young children (brother 53 and I 54). So it was a long ten months with her. When the call came we moved her to the nursing home #2. This lasted 6 full days and we took out her out of there. This place was totally not acceptable there was no communication with staff, they were not nice, care was not there even the Dr. did not have time to talk to us but felt necessary to prescribe new medication without even discussing it. Finally the home we originally put on top of our list had a bed available and we took our mother in on Saturday (3 days ago). Home is lovely, clean, warm and safe. Staff are all nice and caring. The other residents all seem well looked after, nice and clean. All dressed appropriately no ones going around with a nighty or pyjamas. All properly dressed.

Of course I spent some time there on day one, crying most of the time. Went back Sunday and Monday and today, still crying the most of the time. Getting hugs from the nurses, social workers and other staff members. I really feel this is the right place and a bonus it's only 10 minutes drive. I walked back home today, I just felt like it on a very cold
day.

Did I mention that my mother lived with me for almost 20 years and that of 10 was spent in dementia world?

I am told to go on and start to live my life now. So I am waiting to see how will I do that. I couldn't even go have a cup of coffee myself. I also work full time. I took a day off today so that I would meet with the doctor and do the paperwork. All that done and left my mom around 2:30 and started walking home. I passed by many cafe's a lot of restaurants, fast food places but I couldn't bring myself to go in. Now I feel very guilty for leaving my mother at the nursing home. I am not crying at home when myself but seems like the minute I see my mom I start crying. I read some of your posts and for some it had been a while but the feeling is same. I suppose the guilt will stay with us forever.

I just wanted to join in with this topic as it relates to me very much.




Sent from my iPhone using Talking Point
 

Spamar

Registered User
Oct 5, 2013
7,395
Suffolk
I think nursing home was the worst part of it, and I, like others, went through some stirring times before OH finally went into a home. He had started falling and I couldn't lift him. Also Tia rate went up.
When he was there, he got even worse very quickly and I kept thinking that he wouldn't be like that if I had kept him at home. . ..Fortunately ( funny word to use!) he died three months later. Just as I was girding my loins to complain to the home. Afterwards, I just didn't have the energy to complain, think I was utterly drained.
Good luck to all of you!
 

Mercuria

Registered User
May 7, 2014
24
My mother was due to be discharged from hospital pending a "best interests" meeting but just had a fall and fractured her arm and hip, so discharge has now been shelved until she recovers from surgery. I'm going down to see her tomorrow, no idea what state she'll be in or whether she'll even be mobile after this.

She was always so independent and sparky, so practical. Now her conversation doesn't make sense and before the accident she was barely able to walk without help. Old age can be such a cruel thing sometimes when it ought to be the best years of your life.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Mercuria, I am so sorry to hear about your mother's fall and subsequent fractures, not to mention needing surgery. I hope all goes as well as possible.
 

JayneB6367

Registered User
Dec 18, 2013
38
Found this post tonight after a tough visit to mum today. Not only was it a 61/2 hour round trip (thanks m25!) Mum was agitated and not sure who I was first. I persuaded her to come out for a drive and lunch but she was on edge asking how she was going to pay and then upset on her return to the CH begging me not to leave her there. Breaks my heart as I lied and said I would back soon but I'm not going again until Wednesday. I. thought she had started to settle after 4 months but today was tough and i cried all the way home. I find the visits so hard. Dread them in some ways. Then guilty afterwards. I am only going once a week to 10 days dependent on work and it's still hard. Will try some of you ideas but at the moment I just hate myself for often wishing it was over with. How awful is this disease...
 

Anna Rose

Registered User
Aug 27, 2015
4
some things that might help

my mum is also losing her language skills, and visits are difficult.
I have a rummage box for her. It contains bits and pieces like fancy buttons, small teddy bear, pine cones, also bracelets and necklaces, reindeer bells. I get stuff from charity shops and junk shops, because she likes things that are glitzy.
We spend ages rummaging through the box,looking at things and trying on her jewellery. Between visits she forgets about the box and its contents so we can start all over again next time.

I have also made her a knitted 'sensory band' using different coloured and textured wool. I saw this on facebook, the Royal Norwich hospital had made an appeal for people to make them for dementia patients at the hospital. It's basically a knitted tube, and you can sew on buttons, toggles, ribbons etc.

It's just something for her to look at and fiddle with. It helps pass the time, and helps me to interact with her. It also serves as a distraction. If I can get her engrossed in something, I can slip away when its time to leave. Yes I feel bad, but at least it avoids a drama.

Taking mum out isn't really an option for me any more. It just seems to confuse her even more. These days if we walk from one residents lounge to another she thinks she has been on an outing. Bless her.
 

TherapyRunner

Registered User
Feb 5, 2016
3
Taking comfort from others

I'm sorry I can't make any suggestions to help you, but I really appreciate reading everyone's comments and own experiences. I've just joined TP, I didn't know what else to do, my dad has dementia and I've found it increasingly harder to deal with, after a particularly bad weekend visit, I've been signed off sick by my doctor, but now find I have too much time to think and it's not helping.

I visit every other month as my dad is a 5+ hour drive away, depending on how kind the M42 is feeling, last week it was not in a generous mood and nearly 7hrs later I arrived at the home. I was really distressed to see he has lost more weight, he looks like a very frail old man, not something I've ever thought of him before, he recognised me, but struggled to talk, and most of the sentences meant nothing to me, over the next couple of days his general level of well being was poor, and though the nurses thought it good for him to go out, he could barely eat or drink and couldn't follow or partake in conversation, I left the home heartbroken and anxious for what the future held.

I went back to work but struggled to cope and then got the news he had fallen, it became clear he had broken his hip in the early hours of the morning, he had surgery later that day. I work in a profession that means I help people with their problems, but I found my plate so full there wasn't any room to cope, I've been emotionally exhausted by the last week, but then beating myself up for not being able to just get on with it, it's strangely comforting to hear others are in the same boat, and maybe it's ok to grieve for the man that was my dad, even though he still lives, so thank you for your experiences, on a happier note he seems to have improved under the care of the hospital nurses, he's up and talking, he's eating well and mostly on his own, he has a drip in to help hydrate him, and my relatives that live locally can't believe the improvement, I suppose now the worry is will he deteriorate if he goes back to the home :confused:
 

CJinUSA

Registered User
Jan 20, 2014
1,121
eastern USA
I just found this thread.

Sometimes I still grieve my mother's condition, but most days, while I recognize that she is my mother, I try to push my thoughts into her direct care - what does she need, is she comfortable, is she warm enough, you know, questions that pertain to her current need. I call her Mom sometimes, but I also call her sweetie, honey, and sunshine, the way the caregivers do.

This morning, she was self-aware enough to say "I'm sorry I'm so difficult for you." She knew she was my mother today, in other words. Most days, however, I'm just another caregiver, and this, in a way, removes from me a burden.

She lives in my home, so I have a chance to see her 24/7. I tend to stay around on the days she knows me and to disappear and let the caregivers take over, when she doesn't.

So while I have no specific suggestions really, I can say to you all what I say to my sisters: The lovely woman before you is our mother, but she doesn't remember her relationship to you in that way; she remembers that you come to visit her sometimes. It will help you cope if you stop thinking of her as Mom and instead think of her as a lovely woman you once knew. If she doesn't remember your children, that's okay. Show her pictures if you like, and tell her these are people you love.

This has helped my sisters cope. They readily say they couldn't do what I'm doing. To their credit.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,166
Yorkshire
Hi TherapyRunner
I'm glad you found us all here on TP and pleased that you've already found it helpful to read of others' experiences.
So a warm welcome
your post conveys so many of the highs and lows we face - I'm so sorry you've been struggling so much recently - you're right to take some time for yourself, none of us can carry on without some kind of break at times - and if your dad is doing better at the moment, it's a good time to treat yourself a little and recharge your batteries - looks like your relatives are keeping an eye on your dad - so just for now allow yourself some breathing space and set aside worrying for a few days
best wishes
 

cat64

Registered User
Sep 1, 2014
45
Just found all you lovely people and so glad I have similar experiences and feelings to you all.

Mum is 77 and has vascular dementia. Fingers crossed she will enter a good care home 3 weeks tomorrow. It has been a long battle as she has been at home with carers for several years. .....I am sorting the finances as I have power of attorney.
We took her for a visit on thursday by telling her she was coming out for a meal which thankfully she decided she would.....My sister and I visited 10 homes and this is by far the best and also the care company have said it appears suitable.

It is the moving of her that is the biggest and scariest thing as she is leaving her home town to be near me.............how do we pack without her knowing? Think we are going to take her clothes wash stuff first /pictures. Then move her chair later...just cant think how we can get it there otherwise...my sister drives and lives near mum but I dont. She refuses to do so much so even little white lies frequently dont work.....told her the carers needed time off and she said no not having a little holiday. absolutely adament. I know she will have forgotten by now but its still scary.

It is just like a bereavement already ......every time I even think of her moving it feels like Im going to cage her and I get upset. It is such a cruel disease and even though I know its the right time and it has to be done..think I will be a gibbering wreck.

thanks for letting me rant. feel I will be on this site a lot more in the months to come. :(
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
It is like a long period of grieving for the person u knew- still there, but different- every time u visit. Dad been in home a year, on my 2nd visit, I reversed into another visiting relatives car in care home car park!! I was so stressed and confused. Not my finest hour- I guess time helps. Thinking of u. X
 

Sophie1547

Registered User
Feb 22, 2016
3
Mum's been in a wonderful specialist dementia care home for 2 years now, after struggling at home with dementia for several years. It's a 6 hour drive from my home, so I visit every 2 - 3 months. Since the time she moved to the home she hasn't recognised me. Her speech is deteriorating gradually so that now she is using made up words for about one in six words ("Well they said they wommed the golshy but I know they really wanted a beng thing"...). It's increasingly hard to get her to talk at all (I NEVER imagined I would find myself saying that!!!)

After the massive, relentless stress of being a long distance carer for so long, the first year of visits were joyful - I was so relieved to be able to just talk, listen, and hold hands without worrying about life-threatening risks all the time. But increasingly I'm finding that I have a huge emotional 'crash' after every visit, feeling like I've been suddenly dropped into the most intense phase of grieving. It passes in a day or two, but leaves me washed out for several weeks.

My question is: what practical things do other people do to manage this? I try to arrange visits to other family members with small children, and make sure the night after my visit I stay at a hotel or B&B so I don't feel I have to socialise if I don't feel like it, but still end up feeling like I've been punched in the face.

All suggestions welcome! Thank you :)

Your situation sounds very stressful and difficult, mainly due to the distance you are away from your Mum. I am wondering if she could be moved to a home nearer to you, as you didn't mention any siblings or a spouse. Could you get the train to save you driving so far , as the drive itself sounds exhausting and time consuming, eating into your free time, which you need for your own health!
 

Crunchy

Registered User
Feb 21, 2016
42
My parents were both in different respite care homes four hours drive away from me for ages, until my Power of Attorney documents came through for both of them and I was told there was no way my father would be allowed back home to live alone again.

It was an awful time, I really sympathise. All those hours alone in the car, the Peterborough Services became my second home, and their coffee shop saved me on many occasion. I used to often drive through a blur of tears in driving rain and marvel at how I never had a crash. Before their dementia, long car journeys always had something nice at the end, but that all changed and I used to dread those visits, feel bad for leaving my other half alone yet again, and having to say no to social invites because I had to see my parents. All of which makes you feel guilty, because after all, it's your parents isn't it...

So if you possibly can, move your mum to a home near you. My mum is now only 15 minutes drive from me (as was my dad, he died recently), I now see her little and often, and it's SO much better. I can pop in on my way home from work even. If she's in a good mood I stay much longer! We also bring her home for afternoons every once in a while, and I can finally say she is part of our family again at long last. She has no short term memory so never remembers when I last visited, but seeing me always puts a smile on her face, long may that last.

I found that having little tasks to do during visits really makes things easier. My dad hallucinated constantly and would ramble on for hours telling me the details of his latest imagined escapades, which got quite boring. My mum asks me the same questions over and over again, also boring. And the last thing I want to do is make them feel that I'm bored! Here are some things I do:

* Take in some memorabilia from their past and chat about it, photos, jewelry, clothes, anything really that you know had significance.
* I load photos on to my iPad and have a little slide show to chat about where I've been and what the kids are up to.
* put on different music on their radio or TV, it's amazing how music can trigger conversation.
* i often take name tapes in with me and sew them on their underwear or something if the black pen has worn off, so we can fill any silent gaps without feeling awkward.
* I quite often take them in a little present, just cheap things that they don't normally have, like a magazine on some weird topic, a hairslide for my mum, or some different fruit or toffee they haven't tried before. Anything to spark up a new conversation.

None of this stops me feeling heartbroken and down when I leave. I guess it is just a rite of passage we all have to go through, but it's good to know others feel the same way isn't it x
 
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