Staring down the rabbit hole with a very young family in tow.(25 Posts)
I'm just here looking for anyone who has experience of supporting elderly parents with really little ones to consider.
My father died suddenly last year leaving my mother (79) widowed. I had my ds2 - 3 weeks later. In the last 10 months I've moved house twice myself, settled ds 1 into school ( very young reception age - he's 5 in late summer) . I quit my professional part time job knowing I could not be all things or superwoman . My husband is very supportive and has. Much input into looking after our two boys . He is also a domestic wonder
My mum is clearly not well. She drinks all day for "medicinal purposes" And she is very depressed, lonely and anxious . She takes a lot of medication and We are over 50 miles away. She had a stroke 4 years ago . I think my dad covered up a lot , enabled her and just kept everything going . She has been in hospital twice since my fathers death. Including after a fall straight after the funeral . The enablement team came in and then were phased after 12 weeks. I organised and shifted furniture straight out of coming out of hospital with ds 1 so a bedroom could be out together downstairs They recommended further care but mum is not interested . She would have to pay for own care . She wanted them out because she wanted to grieve ( and I suspect ) drink in peace.
I went up every week last summer when ds1 was tiny, arranged a holiday away in July. I arranged for a downstairs toilet to be put in . Finally persuaded mum to have Internet shopping ( which I input over phone ) and sorted some arrangements for my dads interment. I've cleaned the house, sorted some bills , organised death certificates , car tax , council tax , changed names on bills, sold my dads car to a buyer we knew . I've done a lot remotely .
My son started school in sept - so I was tied to school run and couldn't go for the day . I hosted a weekend for relatives in october so my mum could see her sister as going to see her up north was impossibly as she is in pain with her arthritis , her mobility is limited and hosting herself would be a disaster. My ils hosted Christmas for us all over 4 days . I was in the doghouse that she could not come to us at ny ( I just end wanted a break) . Throughout the autumn as we have slowly moved into our new home , painting and decorating , new floors . Mum has come and stayed for a week in possibly the most finished room . I thought it would do her good , chance to see kids/ baby, relax as she is overwhelmed by the day to day running now of her house .
( at home She eats ok ish , does her own laundry , has a neighbour popping in and a couple of friends ( although one is not reliable and I suspect drives erratically ) mum relies on these to help and transport when she leaves the house. She refuses to pay for a cleaner she can afford . The house is tidy but needs a deep clean. It is becoming too much for her. she agreed to a gardener. She doesn't go out often. She rings me often twice a day . No one has dealt with my fathers belongings yet.
Her memory is going And i suspect she is covering it up . For example she swore she had come by train when my husband had brought her by car. She is racked with arthritic pain, grouchy , defensive . We persuaded her to have a dossette box from chemist but I often find discarded meds. I phoned her gp with my concerns. I've tried to introduced the idea of selling up and moving closer to warden managed retirement housing here in my quiet town . She even viewed two properties on her last two week but dismissed them as being full of "oldies" . She dismissed one as it wasn't painted white and the sideboard would not fit. All legitimate concerns in her eyes which I understand. She talks of getting a semi detached house and painting / doing up hers to sell. It is in need of updating . It would be an overwhelming task for her to organise but will not be shifted from this idea if she is to sell. I suggested renting but this was out too.
Anyway a fairly uneventful but difficult weeks stay has just come to a spectularly catastrophic end yesterday after a 4 am start of her sobbing in her room, thinking she had lost dyhracodeine where the baby is crawling , knowingly , feeding our cat Cheerios despite being asked not feed it human (it was sick ) , crying on the sofa plus usual mother / daughter criticisms and always chiding my ds1 for manners , not wearing slippers etc usually when he is just watching tv . I lost my temper spectacularly in front of the kids resulting in one of those arguments that every remembers for 20 years . My husband was at work , it calmed down and he took her home up the motorway 3 hour round trip.
I rang a friend . She came round and amused the baby I showered and and admitted I'm not coping .
I went to the docs this morning and my bp is through the roof . I've unplugged the phone and hid on mumsnet.
What now ? It's like looking down the rabbit hole.
I think when she said I hadn't come to see her all winter . I lost it I don't know what to do and my little ones must come first . Ds 2 . I've missed his babyhood
It sounds awful. Something obviously needs to change. However it also sounds as if your mother is in a fair degree of denial.
How bad is her memory? Will she remember the row? I would not worry about losing it, but instead think about how bes5 to use what has happened. Your mother is frightened and wont want to alienate you. I would give it a day or two till you feel less shaken. Then a conversation acknowledging it should not have happened but you are really stretched to breaking point: 2 young children; your father dying; all you have done in the past year. You want to continue to help and support but she needs to meet you half way perhaps by moving closer.
If she is similarly shaken this might work. If she appears to have forgotten I would press for a memory test. A loss of empathy is a sign of dementia and makes constructive negotiation near impossible.
And do keep posting. I like your description of a once in 20 years row. I had a few of those last year and each time ended up feeling pretty low. And I did not have 2 small children. Instead a kind teenager who kept baking me cake.
This is all so sad for you. You sound like you have been a most supportive daughter whilst probably not having any time to grieve yourself, and not even being able to prioritise your precious little children.
This might sound harsh but you know that your children and husband are your priority.
If it were me I would try her GP again but this time write a letter and don't phone. You should mention that your health is suffering and you feel that your Mum needs proper support to take her medication, so you can ask the Dr to suggest that she has a carer once a day to, as they say with my MIL, "prompt" the medication. This means that a carer cannot force your Mum to take meds but can put them in front of her with a glass of water and encourage her to take them. You can ask him to call it the Enablement team and if he won't then you can (instead of carer) as she accepted them for 12 weeks!
As for a cleaner, I suggest you ask her neighbours/friends if she has one and say that it's a birthday gift for the first two times (or to make up for Christmas or any other excuse) and hope that she keeps the cleaner on. You could suggest that she is doing the cleaner a favour by giving her employment. That's another person going in and they could be called part of the Enablement team if that helps.
I also suggest having a keysafe installed. This means that the cleaner or carer can be told the code and get in the house should your Mum not answer the door (because she has fallen for example). This will give you some peace of mind from afar.
The GP should be able to call her in for an "Over 60s check up" and, armed with all the information in your letter, gently question her. It is likely that she will deny everything but hopefully he can see through it and perhaps give her a memory test while she is there. I would suggest you stress that she is not taking her medication properly, despite the dossette box, as this should raise alarm bells with him.
Thank you . There is a key safe and she has a lifeline pendant which helped after the last fall. The cleaner was recommended by a neighbour and I got as far as getting in contact swapping texts etc but then mum got involved and said shed sort it and nothing has happened... Lots of excuses why . I warned by well meaning family members that I should not rob her independence suddenly by taking over . So ive held back on some things and step in when it ends a mess . Partly to give her done confidence back too. for example selling my dads car became a logistic nightmare of her insisting it had to be sold with tax , mot valeted . even after explaining what sorn was - it took 4 months to happen for a friend !! But then she didn't cancel the insurance and sworn the DVD as she calls them never confirmed she was no longer the registered keeper. Cue panicky phonecall to me come renewable time and I spend a morning on the phone sorting out with a wailing baby !
She will remember the argument. It will fester for months . She has fallen out spectacularly with her other sister ( they both have form) there was so much mudslinging I doubt they will ever see each other again.
I read my op back . It's not clear she's stayed every month for a week since September . It was manageable with a newborn and a handson husband . But it's just getting too much for me . I feel like there's a line been crossed and mum is going at her pace whilst we all fall apart around her . She jus says she wants to die and only has a couple years left . She says that she understands that I'm under pressure , tries to be helpful around the house ( but like anyone staying in your house it is sometimes more trouble than is worth! - but I'm careful to be encouraging , thank her but it is exhausting because we hav to say thank you so many times or she gets in a huff. My dh says she'll never come here - she just will never let us have any real support in her affairs ie name on bank account so we can do Internet banking . h still sees me as a kid " I have no real experience of life! I'm 40 ! If I try and suggest something I'm " hurtful and talking down to her and I really try not to be !!!!
Something's got to change now - I truly see her point of view but I can't take it much more ! My marriage will fall apart . A year has passed I just don't know.
The letter to the doc was my next plan .
There is a great deal of denial . She reapplied for her driving licence and the dvla gave it her. However as yet she has not yet got behind the wheel and made excuses - breakdown cover / cant find ancient mobile phone not sorted etc I'm hoping it won't happen
You poor thing. You have done wonders but you must look after yourself. Have you thought of counselling for you? Have you had space to grieve? You may need to step back or your own needs. Your first obligations are to yourself and your children. I know the rabbit hole feeling. Take care.
No I have had no space to grieve. I've had to just back off and detach. I plan to grow my new garden and try and rescue pots from dads gardener as he was a keen gardener . I've bf ds2 and get little sleep . I've tried to take some pressure off dh last week and go up and fetch her by train with ds2 in tow last week but its nerve racking. I posted under another name about how she leaves stray meds .i am primarily her bereavement counsellor, secretary personal shopper. I got angry and said I was her whipping boy and she attacked me verbally and said it was all lies. We've never really got on. Dad was the peacemaker. I see his ghost behind her telling me to leave for a quiet life. He never considered this might happen as he was " healthy" . He just keeled over with a heart attack .
This is so hard. Really feel for you but please find some space for you to grieve. Have a look for bereavement counsellors- many hospices offer it. Please put yourself first.
Strerretje - I feel your pain and have been/am in a equivalent but different situation. The way I have "resolved" it - is to decide a simple list of priorities
A) my DS and DH are the most important people in my world.
B) they need me to be healthy
C) that means I have to prioritise my health and time with them
D) as I am the only earner work needs to come next so I have changed jobs to a less stressful one
E) we have chosen to move house many miles away to enables us to "manage" the time I then spend with my parents
Thinking it through calmly and as objectively as I can really helped.
It's not easy and I have cried rivers but its the right thing for me and my DS, DH
Hope this helps - good luck
Thank you for all your kind words . I've decided ill write to the gp and write to mum. If I speak to mum on the phone . She just does not get it . In the past a letter has worked in getting at least point of view across.
All I want is for her to understand that now it isn't about picking up the pieces because dad is gone - it is about her now
I want her to
1) go to the memory clinic and find out what's happening - it's up too her whether she chooses to tell me .
2) decide if she wants to sell up and come here and make a plan / timeline how it will realistically happen without too much impact on her health.
3) if she wants to stay put , then she must get a cleaner and accept she cannot stay for long periods of a week here. Weekends and high holidays yes.
That's it really . Things like help with Internet banking , health and welfare poa well those are really details and I can't stop her drinking if she doesn't want to .
I feel so low today . I said to my dh - what shall I do ? The phone is still unplugged . He said just look after the kids .
Really feel for you- great advice from flopsy. Be kind to yourself today- do something just for you- even for 10 mins. You are right. But it,s tough. Good luck
Hi Sterretje- an apparently small thing, but it has helped me a lot. I decide on me time/ time with kids, allocate time to visit Dad (he can no longer get here on his own, his dementia is such he cannot travel alone) and I unplug the phone every evening, after Dad was getting into the habit of ringing around midnight, demanding to know when I was next visiting. I feel no guilt, and knowing we'll at least get a good night's sleep is wonderful. It's about boundaries, although it has taken me 18 months of counselling to get there.
Dear op, I'm afraid I can't offer much practical advice but I agree with what Flopsygrowsup and others have said on here about prioritisng and boundaries (which will give you a sense of being more in control of things if nothing else). And the list of priorities you have just posted sound eminently sensible and a really good way to proceed (and I would write them in the letter to her more or less as you have posted here so she is very clear where the land lies).
But I really wanted to post to say that having lost 3 out of four parents, and dh and I having gone through similar things (and the last surviving gp needing full term care for dementia) you sound like a really loving and devoted daughter who has done/is doing everything possible to help. No wonder you lost your temper. You are only human! It's hard enough looking after two los without coping with everything else you have had to contend with; especially if you are bf through the night/sleep deprived etc. So try not to feel too down on yourself. In fact, you have done wonders in the brief time since your father died
That transition from being looked after by parents, to us looking after them is fraught with tension and difficulties. Your mother is obviously not ready to relinquish control, and yet is reluctant to do things for herself. It's an 'unwinnable' situation - and while that is deeply frustrating for you on the one hand - on the other hand, if you can look upon it as just that and therefore there are only limited interventions you can make - it might help you feel more positive or at least be able to come to terms with the situation better.
One last thing - one of those emergency button things that alert a call-out team or friends/neighbours in the vicinity might be a good idea - just to keep your mind at rest.
Good luck with everything! And keep well yourself!
Hi Sterretje, Your situation sounds awful and it's so hard when your mum's resistant to formal help too. It sounds as though she's really not coping with being on her own and is frightened and depressed, which can also affect the memory and mimic dementia. It's not surprising that she wants to bury her head in the sand and she must be terrified of losing control and probably of being 'locked away'. I think you really do need to get the GP on side and a letter sounds like a good idea, also a letter to your mum to redefine the boundaries whilst recognising that she will need help to do so.
She might benefit from a CPN (community psychiatric nurse) assessment to set the ball rolling. Also, does she have any kind of informal support network locally? In addition to friends, often voluntary organisations such as Age UK and Cruse feel less threatening (and are free/less costly) than formal support. She may actually qualify for Attendance Allowance if she does have significant and long-standing difficulties looking after herself and with memory, which would help financially. If she feels too young to be a client, could she help bring structure to her life by eg volunteering at a day centre or charity shop? Re medication: you said she has warden call; usually you can get telecare medicine dispensers from the same people - although there would probably be an extra charge.
Also. as others have said, you do need to look after yourself and I suggest you check out your local carer's centre for support for yourself and also pointers to further practical help for your mum. A carer doesn't have to be living in the same house/town to qualify for support.
Hope that helps a little.
Hi sterretje. I had a similar experience not long after my DC1 was born. My mum (widowed many years ago) had been exhibiting erratic behaviour for some while, but as she could always be a forgetful, contrary old bitch we just put it down to anno domini. (Background info: I lived 100 miles away, and I'm an only child. Mum is now 79.)
After DC1 was born in late 2009, things really developed. I got calls from her neighbours saying that she was doing things like book taxis but then deny that she had, lock herself out of her house, forget how to work her microwave and ask them to do it etc. She was also ringing me daily to berate me for not having gone to see her, when I'd explained to her that I'd been very ill pre-and post-birth and hadn't been able to travel anywhere! She then started making excuses why we couldn't go to see her with baby DS... When we finally did go, her house (always messy) was an absolute bombsite. And filthy dirty too, despite her having a cleaner.
I got in touch with her GP and they contacted me to say how relieved that they were I'd been in touch with them, as they suspected something was badly wrong. Mum was scoring very badly on various memory tests and was obviously disorientated/confused whenever she rang them (which was every day) or went in. Community mental health team then got involved as did SS, and a preliminary diagnosis of Alzheimer's was reached. Initially Mum had carers going in every day to help her take her medication (she was on a cocktail of drugs for arthritis, blood pressure etc) but it turned out to not be enough. She would be on the phone to me more or less constantly after 5pm, asking "Where am I? What am I meant to be doing now? Who is bringing me my dinner? Where's my bedroom?" This from a woman who had lived on her own in the same house for 20 years.
I was being run absolutely ragged hurtling up and down the motorway every weekend and sometimes midweek too. DH had undergone an operation for cancer on his hand, so I had to get friends in to help look after DS (then 9 months old). I realised that things couldn't go on as they were, and I started looking at care homes. Mum was adamant that she wouldn't go into one, though. Ultimately fate intervened; on New Years Eve 2010, while I was staying with her (DH and DS at home) she fell and split her head open. At A&E the doctors thought I was her live-in carer, but after I disabused them of that notion they admitted her and I got her straight into a care home (that I'd already identified) from discharge.
Do I feel guilty that I overrode her wishes and made the decision to put her in care? Not one jot. Many people will see me as heartless for not wanting to support Mum in her own home, or give up my job and family life to look after her myself, but my DH and child (now children) came first. And always will do so. In any event, my mum would have had to go into full time care at some point; she is now not mobile, is doubly incontinent, and has very disturbed sleeping patterns.
So when you say your little ones come first - damn right they do.
I wish I knew what to say to you..
My dad died very suddenly last July and my mum was totally dependant on him.
I have had no life since my dad died. I took care of everything after he died (being his executor.) I arranged the funeral, everything.
She has needed a lot of work done on the house - all of which I have dealt with.
ThIs is my life ATM;
I do the school run - except this week as ds2 is ill - go and see mum, take her shopping/to the dr/hospital etc, try and do some housework, try and have some lunch, go and see mum again, pick ds up, dinner, homework, bath and bed.
Most days I go to bed with the kids I am so tired.
Dh and I are like ships that pass in the night.
I had to have emergency surgery in November and she offered no help at all.
She is so unhappy and doesn't see that I am suffering too...my dh and I tried to revive my dad (unsuccessfully) and I will blame myself for the rest of my life.
In fact I wonder whether deep in her heart she does too
I have 2 siblings and yet it is me that she relies on.
I have to pull away, as do you I think.
We are entitled to a life.
Sending hugs x
Oh, and mum is coeliac. She refuses to stick to a gluten free diet and so for the last 2 weeks has had bad stomach cramps and diahorrea. She refuses to acknowledge that it's the coeliac disease.
She had a femoral bypass a year ago and needs to walk everyday. If I dont go and physically take her for a walk she wont go.
It's like dealing with a stroppy toddler and I am starting to resent her
Virtually identical story to Fishandjam here (right down to is it the lifelong contrariness or is it Alzheimer's, it soon became clear it was Alzheimer's).
We had to take the decision to put her into a care home a year ago just as my first DC turned 1. She simply couldn't continue to live at home alone, she wasn't eating or washing and we were terrified of her wandering.
The first few weeks were horrendous, we were seriously worried the care home would kick her out! Anyway to our utter amazement, after a few weeks she settled in really well and even made an equally dotty friend. When I visit and see her clean and well fed and chatting to her friend I can't believe we waited as long as we did. We just about manage to cover the fees through her pensions, attendance allowance and renting her house out.
This is what we are facing as we live longer lives.
I am into my 17th year of caring for sick, elderly parents and PIL.
My parents are both dead now, but my PIL look set to go on for another 5 years at least. I am looking at not being able to retire because of the cost of topping up the fees for MIL's dementia unit.
IME as people get older their world shrinks. Everything becomes about them and they lose the capacity for empathy. They simply don't remember what it is like to have responsibility for a young family, a job, etc.
Most of our parents' generation did not have this burden of caring for elderly, demented people because people didn't live that long. Few people lived long enough to develop dementia because their other illnesses would carry them off.
OP, you need to step back and consider how long you can cope with this. The well meaning family members need to step in and care for your DM for a few weeks to give you a break.
Social services will allow you to struggle on until you break.
It seems cruel, but sometimes you have to step back so that social services have to help.
It is clear you DM needs a lot more care and supervision than you can give.
OP, I suggest attending an Al Anon meeting. Other health issues aside, it sounds like your mother has a drink problem, and Al Anon is very good at helping you establish boundaries with tricky people you are close to.
You may also wish to contact the Alzheimer's Society, Dementia UK and Carers UK for further support for both your mum and you.
"It seems cruel, but sometimes you have to step back so that social services have to help.
It is clear you DM needs a lot more care and supervision than you can give."
Definitely, we genuinely thought we were doing the best thing trying to keep our mum at home. After seeing her thrive in the care home we can now see that we were so wrong and my mum is the last person you would expect to accept being in a home.
Wow - thank you to all your kind words and sharing your experience . You have given me a lot to think about. I will update when my head is clearer . X
I just want to second what emperor experienced. After a month or so my mum settled really well into the care home. She actually thought she was on a cruise ship, and enjoyed herself no end. Even now, with her dementia so much further advanced, she is calm, in good spirits, well fed, well dressed, clean and comfortable.
I know you may not be facing the exact same issues with your mum, however. Do speak to her GP, and your own come to that; I found mine and my mum's to be very helpful in exploring different options.
I find what 3 frogs says very pertinent. My dad would not have been alive now if it wasn t for medical interventions, notably during heart attacks. If you project this onto a national level and even more so 30-50 years into the future, the ramifications are clear. People living longer, with added Burden of disease. Dementia risk is linked to diabetes, obesity, lack of exercise and as we know there s more and more of that. And what about those who have no children? ( also a rising demographic). Who is going to support them when they get dementia ? The whole thing is scary.
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