Guilt and resentment overload

[jojo2018]

Hi there

I'm new to this forum but have been reading people's experiences for a while now. I can really relate to what you are saying Jojo2018. I too live abroad with my husband. It is his mother that has recently been diagnosed with mild dementia and we are currently awaiting a brain scan too. We see her roughly four times a year and in the past have had her stay with us abroad for three weeks and that includes fetching her from the UK and taking her home again. She is 85 years old and lives alone. We have just spent three weeks staying with her at her house in August. We knew that she had deteriorated mentally and she no longer wants to go out with us. In the past she would go on days out with us etc. Now we find her often with her head on the kitchen table asleep during the day. She doesn't eat properly and is thin and frail but insists she is okay. When I cook for her she wolfs everything no problem. She was assessed by a psychiatric nurse recently at home and he said she was slightly underweight but needs to eat more. She is very good at lying to people about how she is. Her self care has gone downhill totally and in three weeks of staying with her she had a shower once. She doesn't want to leave the house and we had to force her to go out to get a haircut after a row. She can be very manipulative and verbally nasty. The neighbours are very caring and offer to help her go to appointments like the chiropodist but if she does go she will then say horrible things about them afterwards! She has started doing some bizarre things like staying up very late at night and washing pots that have already been washed. Sometimes she gets dressed at midday and often has her clothes on back to front. At other times she's very lucid and and dresses appropriately. Every day is different!

She doesn't want any kind of help at home. The consultant she saw recently asked her how she would feel about carers and she flatly said there is no way she'd have anyone coming into her home. What gets me is that she has started ringing us up in tears or on the brink of tears saying she's lonely. She won't go out and do anything at all which will bring her into contact with people. She has not led an independent life and had no friends of her own when she was married. She distrusts people and is quite paranoid generally and always has been. The neighbour next door goes to coffee mornings at the local church which is ten minute walk away and the vicar even lives in her road but she won't go to anything social. So she guilt trips us instead. She has told my husband several times that all she wants is for us to return to the UK and live in her house with her(!) Talk about selfish... However, I do care what happens to her and I am fond of her but she just won't help herself. I hope I don't sound too resentful. The only support we have in the UK right now is the Memory Clinic and my husband's brother's wife who is good to her and will take her to appointments. His brother however is disinterested in visiting her and would like to see her in a home ideally. Anyway, any thoughts would be most appreciated.

Hi Viva,
It's nice to hear from you, though I'm sorry it's under these circumstances. There are a lot of similarities in our situations - only last week my MIL cried and said she wished we could live with her all the time - with zero awareness of how challenging it is to be here. I feel awful for her but it's harder and harder to even visit never mind stay for long periods - I feel like I am going mad myself sometimes and there's so much guilt when I have negative feelings for someone suffering so much. I never show my frustration so she has no idea how maddening it is. And the friends she has are getting lost as she gets more intolerant of them - falling out with them for seemingly minor things - and as you say slagging people off and seeing the worst in people.
Like yours, my MIL was incredibly against having carers - she threatened suicide in the worst of her arguments with my OH if he allowed them into her home again. However, after they messed up her chemo medication and he had to sack them and find a new company, she wept for days and still talks about no longer seeing the lovely girl that visited who was like a daughter to her. For the new company we ended up just lying because without them she would have starved - we said the new carers were from the hospital and were mandated by her cancer Dr - she argued for weeks but now is happy with them it seems.
We have also started looking into care homes as we can see her confusion increasing and cannot move back and live with her - even if we move back we would not live in the same house as we do when we visit because it's getting unbearable - but that's a huge battle that we are scared of starting.
I sometimes feel at the end of my empathy when she tells us off for something like stealing her things or spending too long in the shower, or rails against an awful neighbour or friend... but then I see a frail, confused old lady who raised my OH with love and needs our care to survive and feel hugely guilty!
These are tough times for all of us - I can only wish you luck and suggest getting carers somehow to lessen your load and worry.
J xx

 

[Sirena]

@jojo2018 So pleased your MIL has accepted carers. I hope the next stage goes okay, I know it seems like a mountain to climb but you will get there.

@Viva I think the refusal of help plus pleas of loneliness are common - my mother did the same. She told social services she was absolutely fine and needed no help, but then complained about being lonely. She lost a lot of weight and we eventually realised it was because she couldn't remember what food to buy or how to prepare a simple meal - if a friend cooked for her, she'd wolf it down.

She could not cope without carers so I organised them without asking (she was self funding). I never said the word 'carer', I introduced it as a 'nice lady' who was going to help her with things she found difficult, like carrying shopping or getting the cat to the vet. And while they were about it, they also cooked her two meals a day, helped her bath and dress, did her laundry and took her shopping.

My mother had carers for several hours a day but still said she was lonely, but at least I knew she was being looked after. She's now in a care home as she needs supervision 24/7 - and she's no longer lonely because she has constant company. She loves it there.

 

[cobden 28]

There's a lot in this thread that sounds familiar to me, although my Mum (87) doesn't appear to have any sort of dementia. Mum is a widow and lives alone in her bungalow; she has numerous medical complaints not the least of which was a mastectomy earlier this year, and she's also as deaf as a post but has to be reminded constantly to put her hearing aids in so that she can hear people when they try to talk to her. Without her hearing aids in it's almost impossible to hold a telephone conversation with her because I need to enunciate carefully, speak slowly, and repeat myself several times (raising my voice at each repetition).

Mum's only known living relatives are myself , my married daughter (Mum's only grandchild) who lives in London and doesn't drive, and a male cousin living up in Yorkshire. I live 25 miles or 3/4 hr drive away (on a good day) away from Mum. Mum had to give up driving ten years ago because of macular degeneration and because of mobility difficulties - she walks with a Zimmer frame indoors and a stick outside - she never goes beyond the end of her driveway unless somebody drives her, either a volunteer driver, local taxi which is expensive, or myself.

Because of the distance, time and the likelihood of getting stuck in commuter traffic on the M27 I have to time my visits to Mum carefully and a simple 2-hour visit can easily stretch into a whole day session if I want to avoid getting stuck in traffic or to be able to park reasonably near to my flat. Mum has a team of carers coming in four times a day to help her get up & dressed, make sure she eats regularly and takes her medications at the appropriate times and to help her get ready for bed in the evenings. She has to pay privately for her carers because of her financial circumstances, and complains bitterly about the cost which I understand is around £200 a week for 4 visits per day, seven days a week. Despite having her bathroom totally modernised a few years back so it's very stylish indeed and set up with all relevant aids for bathing, Mum has to my knowledge only had one bath/shower this year and that was when I was there to help her get in and out of the bath back in July; Mum can wash herself with no problems, it's just that she says she needs someone there to help her get in and get out of the tub at the end of her bathing. I've suggested she gets the carer to help her with this but she doesn't want a carer to see her in the bath; insists it has to be me that helps her bathe.

Mum also complains every time I see her or speak on the phone that she's desperately lonely/doesn't get to go out anywhere/has no friends or family who visit regularly. I can understand in a way because she finds walking difficult so even if she were to go to one of the many social groups for OAP's there'd be the problem of getting there - no transport, you see. She would much rather I went to stay with her for several days at a time to sort things out at home for her, but this isn't possible for me because I've had a stroke and two heart attacks myself - plus I have a menagerie of pets that can't just be left alone for days at a time with no food and water. Mum's comments on that are that my two small dogs are always welcome (but her garden isn't at all escape-proof and one of my dogs especially is a little Houdini, an expert escapologist) and that I should simply get rid of or sell the rest of my pets so that I can care for her instead.

She's my Mum and I love her of course, but it's so very frustrating trying to explain anything to a deaf old lady who won't wear her hearing aids but still expects everyone to be able to communicate with her. She says that 'everyone else in her close has family who visit regularly' and she either can't or won't appreciate that I have medical conditions myself which make me very tired when under any kind of stress and I simply can NOT visit or help out as much as Mum would like me to.

 

[Sirena]

@cobden 28 You sound as if you deal very patiently with your mother. I think it's fairly common for elderly people (with or without dementia) to try to guilt trip children into visiting/caring for them. My friend said his mother was always telling him how marvellous her friends' children were and how often they visited - unlike him! Fortunately my mother never tried this with me - she would have got a dusty answer if she had.

I'd be surprised if she was only paying £200 a week for care. My mother's carers were £22 an hour weekdays, £24 an hour weekends.

 

[Viva]

Thank you everyone for replying to me. It's good to hear other people's experiences. We have decided to go over and visit her for a week in December. Hopefully this will cheer her up. I found out yesterday that she has not received her appointment for her brain scan yet because she is supposed to organise the appointment herself. As far as I am aware this wasn't mentioned at her appointment with the consultant but if it was it has been forgotten or not told to my sister-in-law who accompanied her to the appointment. Apparently there is already an appointment booked with the consultant to tell her the results of the scan yet she hasn't had it done yet! Comical really. I think they should re-name it "The Psychic Clinic" as you have to be psychic to know what's going on!!! Anyway we'll see how it goes.