Any advice please? Finding it difficult to keep up with visiting my Mum

[restart2008]

I wonder if anyone would have any advice about my situation? I have a 7 year old DS and an 84 yr old Mum. I live about 40 minutes drive from my Mum and my sister lives about 2 hours away. My sister tries to visit my mum maybe once a month or so, or makes visits that coincide with family get togethers. She also has my Mum up to stay in the school holidays. I on the other hand tend to go and see her most Sundays as I am closer. Lately (last couple of years) the visits have seemed to be more like an expectation.
My mum isn't in the least bit emotionally draining on me, she tries to call not so often, and prides herself on her independence, but there is an unspoken agreement that has now set in place that I go over with my DS on a Sunday. Sometimes my DH comes along, many times he doesn't. It wasn't so bad when I was working PT, but I have just started a FT job and I am really beginning to resent going over. I feel terrible saying this, but I have so little time in my own home. Saturdays are spent taking DS to gymnastics and swimming, then Sundays at my Mum's and then work Monday... My Mum often says to me that it doesn't matter if I don;t visit, because she visited and looked after her Mum and inlaws and knows what it is like. But I feel that she is lonely, loves to see my DS and really relies on the routine of the visits. And if I don't go for a while there are comments such as she has forgotten what my DS looks like, which do make me feel like I have neglected her a bit. I have begun to resent these kinds of comments, and have started to feel that she is being a bit passive aggressive, but I don't know how much is me reading too much into comments. The thing is, my Mum who doesn't drive, will spend hours on buses visiting friends etc.
Anyway, for some reason yesterday I completely lost it when I went to see her, horrendous, bad tempered (mainly because my DH didn't come with me, but forgot to say he wasn't coming til 5 minutes before I left the house). We have also just had a very stressful holiday with my MiL (another long story). So I think the whole aged parent responsibility has been weighing on my mind. I ended up shouting at Mum and saying I didn't count in the picture and that I needed time at my own house at the weekends. I feel terrible about it, she was upset, DS was upset. We did talk about it and I said that I wanted her to come to my house now and again, because not seeing her makes me feel bad and it's good for her to see DS, but I want some time to get my house in order. We left on OK terms but I still feel like I have hurt her and she'll be worrying about it. Should I call and discuss it through with her again? I feel guilty asking her to make a bus journey to see us, but it would just be so nice to have her over to my house instead of us spending the whole day out. I would obviously drive her home. Any advice gratefully received, I am not sleeping very well because I feel so bad about it all.
Sorry for the ramble

Can she come and stay over? You could collect her on sat late afternoon to save her the bus journey and drop her home after lunch on Sunday. More time at home for you and as its your mum, hopefully you won't feel that you have to entertain all the time (?).

If your mum would benefit from some help around the house, could you suggest a home help to call in a few times a week? Or if she is fairly independent how about a befriending scheme?

I'm thinking if you know she is seeing people regularly, you could at least drop down to every other week? As a start, could you talk it through with your sister and find out which date she's visiting, so that you know for sure you stay home that day. I would aim to work on a fortnightly basis, every other to begin with, and see how you go with that.

It's hard being in the middle, I feel for you. Dad was diagnosed with dementia 7 yrs ago. Me and my sis looked after him at home between us till earlier this year, but the last 12 months were horrendous, as his decline was more rapid. I have a 6 and 8 yr old and now a 10 month old. Juggling everything last year whilst also being pregnant was so hard. I feel for you. My house still hasn't recovered. I'm embarrassed when people call round as it desperately needs a good decluttering!

Also does your DH understand how stressful you find it all? I don't think my dh truly got it, and it added to our problems. I would recommend sitting down for a heart to heart and just explain, so that if you are short with him he will understand, rather than it potentially causing unnecessary tension.

Thanks so much for the lovely responses. That's a good idea about seeing if she'd like to stay over. I have bitten the bullet and called her, she's fine and wants to drop visits down to once every 2 weeks! Which is a help. I just feel for her, i think shes beeen down in the dumps but she is a very positive lady. I hope I'm like her when I'm that age...
daisy what you've been through sounds so hard, it is so tough being in the middle like you say. Sounds like you've been amazing holding it all together. I have had a chat with dh and that is still work in progress! But we have other issues with his mum which is tough for him - probably early dementia. Anyway i feel much easier with it all now. Glad I've cleared the air but wish it could have been another way! Thanks both of you for taking the time to write, it has been a massive help.

For what it's worth your mother sounds like a lovely lady who is obviously very keen to see you and her DGS but understands you need time to yourself and it trying not to be too clingy. I know how hard it is when parents get old and somehow emotionally or just down right all round dependent. Like Daisy D I have a Dad c Alzheimers and I feel my life has been hijacked for the past 5 years. But counselling which was very necessary helped me to see I did not have to feel guilty for wanting time and other things to myself.After being very intensely involved for years (I had no choice, my only sibling has mental illness and in fact was an other item on my list of things to manage) I have gradually taken a step back and only visit once every 3 weeks. Thanks to the counselling I don't feel guitly. I must admit that Dad is in no state to get on the phone and demand more visits (as he used to do) he now has all day carers which I set up, and I feel OK stepping back a little.
Good luck with setting the new boundaries, you have made a start and your mum has responded well so that is positive. Everyone who is onvolved with older parents feels the need to claw back time for themselves sooner or later. Do not feel guilty.

I know its not necessarily possible, but is there any chance of her moving a bit closer to you?

Oh that all sounds positive! Hope it works out well and you start to feel you have some time back again.

How much would a taxi cost, say to be used once a month? Then she could join you in your normal family activities, which would reduce the stress on you, yet allow you to not to worry that she was on her own. Or a bus/train to somewhere close to you and then someone could pick her up.

FT, kids and an elderly parent is utterly draining. It is important to recognise this and set boundaries before you start slipping under.

We are lucky in that my mother lives in a holiday location and so have been able to buy a rental property which we let out to cover costs and yet can use for short breaks off-season. Our solution should DH's parents become more dependent would be to identify some out of season holiday accomodation and negotiate a price allowing us to take short breaks. However we are beyond the busy, busy swimming/gymnastics/football/hockey years. I look back and feel tired thinking about them.

I would also take a look at sheltered options near you. It is much easier whilst your mother is well enough to adapt. It would mean she should be able to stay independent for longer.

Thanks everyone. It just makes it a lot easier talking to people in the same boat doesn't it? I had thought about taxis, I'll look into that. The options for sheltered housing seem limited and expensive, I really don't think she wants to leave the place where she lives, and she's only lived in 2 houses her whole life. She is fiercely independent and has a good network of friends. I think I'll make enquiries though as plan b. Who do you contact? Who has a list of places? My mum knows all of them though cause she either has friends or relatives in them, and spends her time visiting them! I just think it's the guilt isn't it? Either you run round helping and nearly run yourself into the ground, or worry yourself when you're not doing it. Whataboutbob, it must have been such a difficult process for you to step back, well done for doing it though. We all do the best we can don't we

I don't know about the sheltered housing list. When we were looking for care homes for dad, we had a list from social services. Appreciate that's a different scenario, but some councils do have lists on their websites. Might be worth a look. Also age concern and age U.K. local branches may be able to help.

We had some good help from Alzheimer's society local branch when dad was first diagnosed with Alzheimer's. Practical stuff like applying for attendance allowance, applying for exemption from having to pay council tax, local support groups etc. also we got power of attorney in place early on, which I'm glad about as it can be very difficult to sort later when capacity is much reduced. Appreciate the different scenario, but it may be of use to somebody searching for info.

whataboutbob I too have reduced my visits to dad. He's in a care home now, so that obviously makes a huge difference, but I look back on the year before he moved and have no idea how me and sis kept going. Dd brought home her school news book for the holidays, in which they write what they did on the weekend. Brought tears to my eyes reading 'me and mummy went to taidys Saturday and Sunday morning' she came with me every single week whilst ds1 went to his sports with dh. I think she loved pottering about, she had her stuff there and DVDs, and I would buy the overpriced mini Kellogg's cereals as a treat. I think she was sad when we stopped once dad moved, but there were so many mornings, when we both just wanted to stay in Pjs and not rush off!

That's it exactly, they do enjoy seeing their grandparents, but it is the whole running round, never exactly relaxing part of it. Every Sunday morning it is get up, have lazy breakfast, then brush teeth, pack stuff for Grandma's and off we go...we're getting an old new playstation at xmas and I was thinking of leaving the one we have now at her house. But just the feeling that every now and again we can stay home and chill would be bliss!

It is worth knowing in advance and before any crisis, what the options are.

To find appropriate housing:

1. Ask everyone who is likely to come into contact with the elderly: vicar, plumber, estate agents (they sell the homes of people downsizing), GP, health workers. Both the British Gas engineer and the priest gave the thumbs up to my choice which was really reassuring as it was a private flat so I was investing a lot of money very quickly.

1. Look at

www.ageuk.org.uk/home-and-care/sheltered-housing3/
www.eac.org.uk/

and also (if you are planning to buy) sites like RightMove which have a specific search box for elderly housing.

Also Social Services may well have a list.

1. You may well find that one area has much better provision than another. We left my mum where she is, in part because she did not want to move, but also because provision, including cost, was far better where she was.

1. Be careful about glossy private developments labelled "retirement properties". Service charges on some can be stonking and restrictions onerus, and can be hard to sell. One I looked at did not allow anyone under a certain age to live there. Not even a 24 hour carer for a couple of months immediately after a hospital discharge. Traditional charities like Abbeyfields and Almshouses often offer the best value.

1. Whilst you are looking around it might be worth identifying what you could do if she were in hospital and then discharged. It all happened fairly suddenly for us when my mother fell on ice and broke her hip. Our solution was convalescent care in a nearby nursing home, but the alternative would have been 24 hour care at home. Both very expensive.

Oh that's so true needmoresleep. We were determined to keep dad home as long as we could. Apart from the Alzheimer's he was very fit and healthy and would walk for miles. As his cognition declined the fitness became the problem and when it got to crisis point and we couldn't carry on, we had a few months of struggling to find a home that we were happy with for him. Then the homes have a waiting list. Then dad was assessed for suitability by which time his needs had changed and needed emi nursing instead of emi residential so we had to start all over again.

I was 4 months pg when I started the first search. Dc3 was 3.5mo when dad moved. No idea it would take so long. (And that was with support from cpn and social worker, which I realise not everyone has).

daisy, there is a real argument for moving someone "early" with dementia so that they can gain new routines and thus retain some independence for longer. We were probably "lucky" in that my mother had a fall which forced the issue, and she just about qualified for very sheltered accommodation. Otherwise I suspect she would have "clung on" till it was too late. Three years later and she is still there, coping surprisingly well despite virtually no short term memory. Hopefully she will manage another couple of years, in her own flat but laundry, cooking and cleaning done for her, and a carer coming in each morning to prompt her medicine and to keep an eye on her.

She bought her flat, but the monthly service charge which covers the 24 hour warden, as well as the reception, handyman, gardening, coffee lounge etc, is only about a tenth the price of the up-market nursing home. Its a popular block so resale should not be a problem. It is also within walking distance of both church and a large supermarket so she actually has more independence than when she was living in her former home.

Because it is dementia and so she is not fully aware of who people are, we have been lucky in that she formed a real bond with one of her carers. I pay this carer to take her out, sometimes with the carer's grandchildren doing normal routine family things. Her emotional memory is such that she sees the carer as the nice friendly person who takes her on outings, whilst I am a the orge who drags her unwillingly to the GP, dentist etc. Its a weird one. She had no memory of going out, yet gets depressed if she does not have a regular change of scenery. Its a bit of a relief that she seems as happy with the carer as with me.

Hi restart. Your mum sounds v independent- which is good and it is good you can talk to her. There are some v wise inputs on here from those who have got the t shirt- and plenty of support on the main responsible for elderlies thread on this board. Being prepared and having information before you need it really helps. Getting a little support in- gardening/ cleaning early on before it becomes imperative is good. And sometimes regular visiting patterns become a noose- I feel really guilty if I don't see dm every Sunday.i'm working on it!

If once a fortnight is better how about you invite her to yours in 2 weeks and then 2 weeks later go to hers. That way it will be once a month. Would that work?

Yes needmoresleep I totally agree with that. Me and sis were so determined to help dad stay home as long as he could, as that's what he would have wanted. As it is now, 6 months down the line and he's still opposed to personal care at the home.

In hindsight, we realise we should have moved him earlier when there was more chance of him grasping where he was. His decline since moving is staggering. - obviously the decline, which had been steady for 5yrs became more rapid, thus the move, so it's not just the home, but he's aged 10 years since moving. Hideous disease.

There really is a wealth of wisdom here! I'm so sorry that you've had to go through so much to get to this point. Thanks very much for your help. Think I'm going to be thinking this through for my dMiL at some point as well. It is a horrible disease