Coping with visiting Mum

[Sophie1547]

Toilet paper

That sort of thing, totally. As you say. The soap, toothbrush and towels that didn't get used for months. The laundry that piled up. The carrier bags full of the food I’d sent, dating back months (concealed, and not where I expected to find them). Neatly folded pieces of unused toilet paper everywhere, including on the floor where they formed "markers", but a definite shortage of toilet rolls in the bathroom. Seven years’ worth of old newspapers. Bills being thrown out unpaid. My books and record collection being thrown out because they were "old and out of date", but rotting rubbish left to pile up in bags in the hall. She’d had to cross a few mounds of junk including bags of rubbish, laundry and unused food (all of which remained un-thrown-out), into the furthest corner of a cluttered spare room, and lean across a bed piled high with empty boxes and other stuff to get at the books and records. (I'm not bitter about it, you can't keep anything forever and I hadn't read them for years, but some of the books are out of print and can't be replaced.)

Yes, we do come out the other side. We won’t be looking at life in the same way again, we’ll likely have scars, but we do survive it.

The hardest thing for me is the ongoing personality change. I find these visits quite stressful and frankly am happier not seeing her, which is a difficult thing to admit, but quite honestly I just don’t want to be alone with her. I don’t know who she is any more. And at the same time, I feel so very sorry for her; she doesn’t have any friends to visit her and no other relatives than me.

(If anyone has any idea what the folded pieces of paper are about do say. I haven't been able to find an explanation.)

My mum used to fold toilet paper neatly and I would find it all over the house, in pockets, shoes, drawers, cupboards, bags. Annoyingly , no loo paper in the loo! I don't know why she would do this. .?

 

[JayneB6367]

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

Crunchy, how did you manage the move from one home to the next? I am thinking more and more about moving Mum to somewhere nearer to me. We chose the home based on the fact she had lived in the area for 50 years and had many friends nearby and although it would mean weekly only visits from my sister and I who are both c. 50 miles away we thought her friends would pop by and it would all be rosy.

The reality is she took ages to settle, none of her friends visit really apart from her old carer who we pay to visit and every trip we do is taking a total of 4 hours driving there and back, we start t dread it, feel guilty all the way there and cry all the way home. I dream of just popping in for 30 minutes a few times a week.

My worry about moving her though is resettling her and the homes in London just not being as good as the home we have her in in Essex.

I have no idea where to start in my thought process in making a decision on this one.

 

[Crunchy]

If she is self funding you can move her easily. Once you find a local care home you like that has a room, ask them to contact her existing home to discuss her needs and assess whether it's suitable.
I expect if she is funded by a local authority it will be more complicated. However in principle all councils are familiar with residents moving to different counties to be closer to family. They may have different weekly contributions though so phone your local adult social services dept to check x

 

[Crunchy]

My parents coped with the move better than I feared as their memory was poor anyway, and me and the kids popping in a lot in the first week made them happy and i could finally bring them round to my house now and again too.
I really worried about the long journey in the car with them though so I got my kids to act as extra hands for that incase they got distressed at any time x

 

[Stevey]

Wow, this is another element of dealing with dementia in the family that has a big affect on me.

My mother (76 this year) has recently been moved from a residential home into a nursing home. I've only visited her the one time so far, owing to work and family commitments - the home is thankfully still local but we have a 10 month old baby who demands a lot of attention and settling down in the evenings, so after work it's exhausting.

Since she went into the care home (back in November) I have dreaded each visit. I feel so anxious about what condition she is in - whether she's settled and looking ok, or if she's distressed and has refused to be changed or is walking around with half her clothes off or if she's sitting in the chair after having wet herself. It's a terrible feeling that I don't think I can ever shake off, even though she's in a better home now.

One of my recent visits - and the last I made to the former home - she was wailing and hysterical in her room, a mess of food on the desk and floor around her, wanting to take her t-shirt off, no socks... it was an awful, awful experience but one that I understand now many people experience themselves with family members.

It may be a terrible thing to say but I actually feel relieved when I leave. We always take our chance to make an exit once she's settled or nodding off. When I get outside and the fresh air hits me I always choke back the tears. My wife has been my rock and my child is a massive and brilliantly joyful distraction. Despite everything happening, I know my lad hasn't a clue what's going on or how his parents are feeling, but he cheers us up no end.

This weekend I plan to take some more photos and other bits and pieces to make mum's room more homely. I do hope that our visits are cheerful and pleasant - and I'm always taking photos at each visit and capturing a smile, because this is how I want to remember my mum despite the challenges we face at other times.

 

[Red66]

Grieving

Grieving daily while Dad is alive is horrendous. Time is a healer they say, time just makes this illness worse hour by hour. I don't know how long Dad will live for but alls I know this disease is horrific and my poor old Dad deserves to be in a much better place. Not living in hell.

I have 2 children under 3 and they are keeping me sane. My poor mum goes home alone, after 50 years of marriage. Her grief must be horrific, I know watching it is.

Alzheimer's, vascular dementia and lewy body dementia. Poor Dad.


Red

 

[Olivia15]

Hi Drmclark,

My mum's been diagnosed with Alzheimer's for the past 5 years and has lived in a nursing home for the past 2 - I sometimes get quite upset when I visit her as I want to be able to have a proper conversation with her but her speech is incredibly limited to the odd coherent word.. I don't know about you but what I find helpful when paying a visit is remembering how much I love her just as she is and not comparing her to how she was.

I also just bought a cool cat activity muff for her for mother's day - as she can't talk much I thought she could do something with her hands and maybe we could connect while she discovers things in the cat - I bought one on Unforgettable and I'm still on the look out for other things I can use to get her to engage with me

 

[Crunchy]

I shall look up the cat muff thing, that sounds great

I remember when my grandma was in a nursing home with Alzheimers, my children were little and they adored her because she was childlike in her pleasure at things they liked, like soft toys and noisy push button toys. It really upset me to see her because, as you say, I compared her to the person I used to know, who taught me so much when I was young. Seeing the decline in my own mum upset me at first, but having seen that process in my grandma already, it wasn't such a shock, and now I just love the new version of her.

Having both my parents developing dementia has brought home to me just how much a circle life is.
My mother has become more child-like mentally in her delight with little things.
My father only became child-like physically in the last few weeks of life, when he needed help with absolutely everything. All my maternal instincts kicked in and I just wanted to protect him and make him comfortable. In a way it's made this grieving period an even stranger experience, as there are so many different versions of him to process and remember.

 

[Mercuria]

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.

Thank you. I'm afraid mother has been going rapidly downhill since her fall, it's been a huge shock to her system. She is now unable to leave the bed, has to be fed and changed (she's now doubly incontinent and looks skeletal), voice barely a whisper, whole sentences are difficult for her. She's being fast tracked into a nursing home. If I can find a suitable one. No luck so far.

It's really difficult to chat with her now. I can barely make out what she's saying and half the time it doesn't make sense. I sit with her, sometimes hold her hand as I cheerfully tell her (in simple language) the brighter things that have happened, and show her a few pictures on my phone. I no longer bring magazines and most of the biscuits and chocolates I bring seem to go uneaten.

It isn't even two years since she had the UTI that triggered all this off. The shocks are worst at the beginning; there comes a point when you just get on with it but you don't realize just how much of your life this dominates until you can get a break from it. There have been times when I've wanted to drop my mobile phone into a river just to get away from the calls, weekends when I've had to turn it off. You never know when it's going to explode into sound and shatter another part of your life. Turning it off hasn't always helped as anxiety levels and guilt then go through the roof: what am I missing? But dreading the phone calls is another thing that eases with the passage of time.

My sincerest sympathy to anyone having to make these visits. They are hard. They are stressful and they are gruelling. Particularly if you stop to compare how the person was with what they are now. All I can say is, I found that taking it as it comes on a day by day basis and not stopping to think about it all in its entirety helped, otherwise I got overwhelmed by it. Time enough for that later.

 

[Red66]

Mercuria, I am glad you asked about the folded bits of toilet paper everywhere.

I've just returned from a visit at the care home, where I noticed that my mother has little piles of folded Kleenex (do you say Kleenex in the UK? some people here in the States say "tissue" or use another brand name; sorry for the tangent) everywhere. She has always folded up Kleenex to put in her pocket or purse, but when I saw the piles today it struck me that this is somehow different. Never mind that she has at least three boxes of Kleenex within easy reach, she had a pile on the sofa, one on each nightstand, another on her foot rest, another on the side table, another on the bed. I could tell it was significant, but not how.

I have an aunt (73 going on 93, but no diagnosis of dementia) who does the same thing but with paper towels. She folds them and makes piles of them, everywhere, to the point where they take over surfaces. My other aunt says that their mother, my grandmother, used to do the same thing. Drives us mad.

If we don't get any more feedback about it here, maybe I'll start a thread over in the other forum about folded bits of paper!

Witzend, it does help to know we're not alone, and to read others' experiences. You were very honest to admit about the times you'd start to go to see your mother, and then not go. Thank you.

I was so wretchedly anxious this morning about going to the care home to see my mother (partly because the solicitor was coming with paperwork, which is usually a guaranteed trigger for anxiety) that I honestly thought I would vomit and/or pass out. I was only there for an hour and a half but now feel thoroughly done in. It's more draining than children, I swear.

I'm going to have to go at my own list of suggestions, to figure out what to do now!

Hi Amy, sounds like an OCD. My dad has Alzheimer's, vascular dementia and Lewy body dementia. His OCD is pulling at his trousers and they end up round his knees. As soon as you pull them down, they are back up there.

OCD is all part of the disease I have been told.


Red

 

[TooHard]

I have, foolishly perhaps, been looking forward to visiting mum in a care home near my brother and I - it won't happen any time soon as all the powers that be are agreed that there is nothing to be done until the crisis that puts in her in hospital again and it's decided she can't go home.

I have begun to hate visiting her. I generally stick to travelling the 100 miles every 3 or 4 weeks but I've had to come back after only two weeks this time as she had a few days of diarrhoea and admitted to making a mess in the bathroom which she'd "tried to clean and was now okay". I offered to find a cleaner and, in no uncertain terms, she refused to consider it. By the time I was able to come back it had been over a week since she made the mess so it was a nightmare to clean. The floor was covered, the radiator, side of the bath, towels, frame round the loo, the loo itself and the door....everything was visibly soiled and had enough time to set solid. I was on the verge of tears while I cleaned. This morning, on a smaller scale, it had to be done again - it's clear that mum is having trouble using the loo (if it's not too much information, she's a 'hoverer' as she doesn't trust the frame). Even worse that the mess that was visible is the thought of her walking the mess throughout the house and touching things with her usually unwashed hands.

There was a pair of knickers with a used tena lady attached to it next to her chair in the living room (she usually just abandons them in her bedroom or bathroom) when I arrived.

She will not consider a cleaner. Doesn't need one. The bathroom was fine for her...I'm just too fussy. The mouldy, out of date food I throw out doesn't bother her. The piles of mouldy food on and under the draining board isn't a problem. I have to empty the microwave (which she can't use anyway) of dog food including open sachets - often several of those and often mouldy) and cold meat (the dog doesn't like his cold meat out of the fridge apparently) to heat the home made food I bring. Mum's dementia is compounded by her visual impairment so she literally can't see the filth that doesn't bother her.

If she lived nearby I could come in, clean and then go home. If she was in a care home I could visit and then go home. I hate staying here and know that, to a degree, I'm being a martyr...I could just leave the mess. I could do what my brother does - he visits for a couple of hours (he doesn't mind the 100 miles there and the same back on the same day) or what my 2 further away siblings do and visit every few months. Part of me is promising myself I won't come back unless she has a cleaner a couple of times a week but I know she won't so I know I will. I occasionally wonder how bad the filth would be without the cleaning I do every 2/3/4 weeks.

SW have been. Until there's a crisis or mum has no capacity this is it unless she can be persuaded to accept help.

 

[Olivia15]

I shall look up the cat muff thing, that sounds great

I remember when my grandma was in a nursing home with Alzheimers, my children were little and they adored her because she was childlike in her pleasure at things they liked, like soft toys and noisy push button toys. It really upset me to see her because, as you say, I compared her to the person I used to know, who taught me so much when I was young. Seeing the decline in my own mum upset me at first, but having seen that process in my grandma already, it wasn't such a shock, and now I just love the new version of her.

Having both my parents developing dementia has brought home to me just how much a circle life is.
My mother has become more child-like mentally in her delight with little things.
My father only became child-like physically in the last few weeks of life, when he needed help with absolutely everything. All my maternal instincts kicked in and I just wanted to protect him and make him comfortable. In a way it's made this grieving period an even stranger experience, as there are so many different versions of him to process and remember.

I know exactly how you feel, sending my best wishes <3

 

[Beth52]

Visiting Mum

My Mum and Dad moved 100 miles to be close to me and my husband.
Mum has had dementia for over 5 years. She is unable to speak and has no awareness of personal care.
Dad doesn't notice how she looks. I spend my 3 or 4 visits every week trying to keep on top of their washing, housework and any other problem that arises. He leaves her to dress herself so she just puts on the previous day's clothes, which have usually got food spilt down them. Even when I put out clothes for the next day he doesn't remind her to put them on, so she doesnt.
He says these things aren't important to him. They would be to her if she could see herself going out looking like a bag lady.
My difficulty isn't only dealing with a Mum who no longer knows me, but negotiating a Dad who thinks he knows best.

























I have begun to hate visiting her. I generally stick to travelling the 100 miles every 3 or 4 weeks but I've had to come back after only two weeks this time as she had a few days of diarrhoea and admitted to making a mess in the bathroom which she'd "tried to clean and was now okay". I offered to find a cleaner and, in no uncertain terms, she refused to consider it. By the time I was able to come back it had been over a week since she made the mess so it was a nightmare to clean. The floor was covered, the radiator, side of the bath, towels, frame round the loo, the loo itself and the door....everything was visibly soiled and had enough time to set solid. I was on the verge of tears while I cleaned. This morning, on a smaller scale, it had to be done again - it's clear that mum is having trouble using the loo (if it's not too much information, she's a 'hoverer' as she doesn't trust the frame). Even worse that the mess that was visible is the thought of her walking the mess throughout the house and touching things with her usually unwashed hands.

There was a pair of knickers with a used tena lady attached to it next to her chair in the living room (she usually just abandons them in her bedroom or bathroom) when I arrived.

She will not consider a cleaner. Doesn't need one. The bathroom was fine for her...I'm just too fussy. The mouldy, out of date food I throw out doesn't bother her. The piles of mouldy food on and under the draining board isn't a problem. I have to empty the microwave (which she can't use anyway) of dog food including open sachets - often several of those and often mouldy) and cold meat (the dog doesn't like his cold meat out of the fridge apparently) to heat the home made food I bring. Mum's dementia is compounded by her visual impairment so she literally can't see the filth that doesn't bother her.

If she lived nearby I could come in, clean and then go home. If she was in a care home I could visit and then go home. I hate staying here and know that, to a degree, I'm being a martyr...I could just leave the mess. I could do what my brother does - he visits for a couple of hours (he doesn't mind the 100 miles there and the same back on the same day) or what my 2 further away siblings do and visit every few months. Part of me is promising myself I won't come back unless she has a cleaner a couple of times a week but I know she won't so I know I will. I occasionally wonder how bad the filth would be without the cleaning I do every 2/3/4 weeks.

SW have been. Until there's a crisis or mum has no capacity this is it unless she can be persuaded to accept help.[/QUOTE]