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Elderly parents

Just not sure what to do anymore

30 replies

HC4U · 30/09/2019 18:36

Hello. My Dad is in a Nhome the past few months. He had early stages of dementia but is now getting worse in terms of mobiliy but he is still recognising us thankfully. Mum is much younger than him and openly noted to us she didn't want to mind him so she did everything she could to get him into a home from his initial diagnosis. Long story.

The nHome is 4 hours away from me and I try everyweek if not twice a week to visit my Dad. My Mum lives 2 minutes away by car from the nhome and I am finding it very difficult to visit her when I go to see my Dad. There is a history there with her behaviour and my tolerance of it. Everytime I visit I am upset leaving and it takes its toll on me and my own family. But this weekend when I visited them both, I just thought I cannot do this much longer where I am constantly scoffed at for visiting Dad making the long journey and "isn't he fine, I am looking out for him" and never ever during the week do I get an update on Dad. She would never phone me or let me know if he was unwell which he had been recently and ended up in hospital. She is perfectly able to go on holidays, meet friends, have everyone have sympathy for her, but she treats her children so differently. I have heard today from staff that she isn't visiting everyday like she has told me and also senior staff have started emailing me with things Dad needs etc. I feel very much on my own as my two siblings don't live in the country and they try to visit once a month but would just tolerate her too and just go through the motions with her. I guess what I am saying is I am just finding the whole thing hard with her more so than my poor Dad. I have also discovered she has lied over two very signifance issues with regard to my Dad and I am finding that very difficult to deal with. My other siblings just want nothing to do with her but I am concerned now that maybe she isn't mentally well as you couldn't make up some of her behaviour. But then I switch to her just being not a nice person and has a major issue with her daughter who is trying to keep a family together and be there for both of them. Just not sure what to do anymore. One part of me is just be there and be kind and do what you have to do. Other side feels like having it really out with her and not being a door mat, but unfortunately the consequences of that I amn't able to deal with. So I guess kindness and tolerance is what is needed. I am so aware life is short having a lot going on in my own immediate family and illness and also having mil and fil who both had alzehmiers and who myself and hubby cared for until the very end. So I also wonder do I feel so bad that Dad went into the home without me being able to care for him in my own home. My Mum just would not let us help and that was such an issue. Also now that she isn't visiting all the time and staff emailing me, if I don't keep visiting Dad I won't know whats needed or going on. Its just the guilt too I feel if I am so close to the nHome and I don't visit her. Thanks for listening....................

OP posts:
Miljah · 30/09/2019 19:30

I couldn't read and run. I can't offer any advice, I'm sorry. I recognise that we were 'lucky' in so many ways, with all 4 parents, none died with dementia, 3 died very quickly (5 days, max), the 4th was well supported at home.

I hope someone will be along with some practical suggestions.

drankthekoolaid · 01/10/2019 08:11

Who is paying for the home? Them or the LA?

Could you move him to a home nearer to you?

Fortysix · 01/10/2019 11:58

There's only so much anyone can do when things get this stressful Flowers
If you travel twice a week then you are 16 hours away from your immediate family/ work before you factor in actual time spent visiting and on the phone 'sorting' your DF and then your DM's separate issues. In real terms you are trying to add three extra days to to your normal week.
1.Such an additional workload isn't sustainable so step back and see what you can do with just one weekly visit.
2.Your DF is safe and his needs are met. He is being fed, has people to talk to and is not in danger. Honestly, from your post he is safer there than being with your DM.

  1. I know some families visit every day but don't be guilted into thinking that someone must visit your DF daily. Put your mum's issues to the side - her going seven days a week- isn't that great for her mental health either. Take a more relaxed view if you can.
Fortysix · 01/10/2019 12:19
  1. oops sorry, got interrupted. It's the emotional stuff between your DF and your DM which is really difficult to work through and reconcile in your head. Be gentle to yourself. You have an awful lot on your plate. For now the issues between your DF and DM can be parked as you can't do anything to change them.
  2. The feelings and thoughts specifically to your DM obviously have some history. Absolutely put yourself and your immediate family first. Don't rush to meet her needs / wishes or hear her criticisms. Take a huge step back from her if you can with immediate effect.
  3. Try to visit your DF once a fortnight say from November.

You are absolutely doing your best. be good to yourself. This very difficult stage will pass. Hang on in there.

exiledfromcornwall · 01/10/2019 12:28

Gosh, weekly visits with an 8-hour round trip each time? Apart from anything else it must be costing a fortune. Getting from A to B in this country is not cheap whichever way you do it. My DM is a similar distance away and there is no way I could manage weekly visits, although she does have family members living locally who visit regularly. I do admire your loyalty to your DF, but this does not seem sustainable to me. As Fortysix pointed out, he is safe and being cared for, so you shouldn't feel guilty about easing off a bit on the visits.

HC4U · 01/10/2019 15:24

Thank you everyone for taking the time to respond. Even just writing the post yesterday helped refocus my own thoughts on things. We as a "family" pay for the nHome. It really is a struggle too for my immediate family to be paying out each month but us adult kids felt we had no option when my Mum had him booked in. But I guess it does also allow us to have some say, so that has become clearer for me when I thought about the payment question that was posed.
Also driving every week is making me tired, I know this. Because I also have to drive two days a week for work not a long distance but 3 hours round trip and I always seem to be on the road then with the kids. In fact we laugh that we should get a microwave installed in the car.

My Mum undoubtedly is unwell and has many features of narcisstic behaviour and has a great gift of being able to make you feel did she really say that, did that happen or am I imagining things.
Recently she said some terrible things about my Dad for her to turn around a week later to say "oh actually those things I said weren't true" and she didn't ever want to have the subject brought up again. So as an adult I just feel now that enough is enough. Try to visit my Dad when I can and to step back from her. Its just she has such a knack of bringing you back in and then wham a incident or something will be said, where you realise you won't change her and will never get a sorry or respect from her. She has such an issue also with me visiting my Dad often and will say - you visit him first before you call into me. Its all so petty.I know she is lonely in some ways but she doesn't make it easy. I also know she resents the attention my Dad now is getting and I think she thought she would get it. Oh sometimes its just a mess. Thank you most sincerely again for your responses and for reminding me my Dad is well looked after and cared for and to stop worrying on that score.

OP posts:
thesandwich · 01/10/2019 17:40

The wisdom of so many veterans of this board is that we have to look after ourselves and protect ourselves to be of any use to others.
Perhaps make clear to the home how far away you are and how best to communicate- there is also amazon if he needs stuff!
Look after yourself

Fortysix · 01/10/2019 23:23

Looked back at this tonight and Sandwich really nails the solution.
There are other delivery vehicles ... literally.
Consider sending your Dad a couriered box every fortnight with toiletries and chocolate. I send one regularly to my younger uni student .
Care packages for young and old Grin
The good old fashioned letter will be a great thing, too. Maybe laminate three or four different letters and pop lots of photos of you and a younger happy him into the text. The staff can re-read them and discuss them with him. Encourage your far away siblings to do this instead of you if they have more time.
Finally FaceTime/ what’s app is amazing. Would be worth getting him a cheap mobile and set this up with the staff for a regular call during the week. Your siblings can do this as well sharing the strain.
Just ideas to consider when he still connects.

NutellaQuest · 01/10/2019 23:47

HC4U Goodness! You are taking on a LOT! There is nice advice on here already for you. About getting stuff delivered etc. And the FaceTime it WhatsApp idea is brilliant.

Reduce your frequency of visits maybe to once a fortnight or once every 3 weeks. Keep in regular contact with his key person.

It concerns me that you and your siblings are paying for this though, out of your own pockets. I don't know if anyone has mentioned this upthread, but please do look into funding from his county council if you are in England. Unless he has savings over £37K you could be missing out on subsidies/benefits for his fees. You could try Help the Aged. some of their local offices provide excellent help with these issues. If not, they can point you in the right direction.

I don't know what to say about your mum, but there is an acceptable level of visits and contact she could make between what she is doing and lengthy daily visits.

Wishing you lots of strength. Give your Dad a hug when you see him. Tell him all the things you need to now, and don't feel guilty for cutting down your visits. You will remember and cherish quality times with him even if they are further apart. Flowers

MereDintofPandiculation · 02/10/2019 10:06

We as a "family" pay for the nHome. As Nutella says, please look into this if you haven't already. It may be that it's a home which isn't on the list of homes that the Council places people in, or it may be that the Council don't feel he needs nursing home care. But assuming you're in England, we don't yet have a requirement for family to pay for care, and if your mother is still living in their home, it won't be included in the financial assessment.

and will say - you visit him first before you call into me. Don't feel the necessity to be scrupulously honest to your mother. If it makes it easier, don't tell her that you've already visited your father.

HC4U · 02/10/2019 15:26

Thank you so much everyone, your advise and responses have actually made me feel so much better and a penny dropped in my "old" head that my children need my attention now and they need me to be present not just physically but mentally and unfortunately my own Mum is taking me away from my own kids. If that makes sense? The nhome are great with my Dad and with me and I am going to speak to the manager later in the week to explain some stuff and set Dad up with another mobile. We had one previously for him and nurse told us my Mum took it away from him as she said he couldn't use it. Another example where she didn't want him having access to others or them him. I think key now is to be strong and put him first while still keeping myself "sane" as well as less tired! Thank you so much again everyone.

OP posts:
drankthekoolaid · 02/10/2019 19:38

How is dad's capacity? You say he's early stages of dementia but that doesn't mean he can't make decisions himself. If he's still mentally able then speak to him about power of attorney and for you to have this not mum.

For health/wellbeing and finance. It sounds like your mum is treating him badly and he could do with her not having a say anymore.

HC4U · 03/10/2019 15:24

Hi, Dad is not able to make decisions for himself in all honesty. I can still chat to him but the conversation is very one sided and when he does try to talk his voice very low and hard to understand him. I know he knows me as his face will light up when I go in and he when I tell him my name holds out his hand and nods etc. When I leave he always hugs me so tight and I treasure that. Now in saying that some days are much better than others. He is very content where he is and never asks to leave etc. I wanted to update you as I visited this morning and I got to speak to the manager who had said she was hoping to catch me as she felt Dad much happier when my Mum is not around. Not easy to hear but makes sense. I am torn with my duty as a daughter and not to feel I am bad mouthing my Mother but at last others see it. Although my husband noted to me they always saw it but I choose not to believe it. So thank you again everyone, it has been a great help to be able to voice my concerns and experience without judgement or pretending everything is ok. I did mention to the manager that there is history between my parents and their kids finding it difficult with their mother, so at least thats out in the open now.
My mother has poa and all these things were done without us knowing anything about it until very recently.

Not easy growing old! Thank you and take care all.

OP posts:
HC4U · 14/10/2019 15:33

Hi all,

Asking a quick question! For those of you with a parent in a nHome. What do you do about Christmas? This is our first year and bringing my Dad to my home isn't an option. He wouldn't be able for the journey. My Mum will be on her own unless another member of family goes to her which is unlikely unfortunately as they are really bringing ties there with her. Therefore I have offered to have her to my home and go to visit my Dad that Christmas morning but she is making a real issue out of it already saying she has to be in the nhome that day. For me the whole logistics is hard going when you have kids with Father Christmas arriving and you want to keep that day too for them. I feel really torn this year. I don't want my Mum on her own on that day but I also know having her to my house won't really work. So do I bring everyone to her and risk my own kids and hubby happiness for someone who really doesn't make things easy for me. Sounds harsh but that reality is sinking in for me more and more recently. But I know Christmas is the season for good will and I want to show my kids good example too and not leave someone on their own. Despite the personality or logistics.

Also sorry 2nd question. What gifts do you suggest to the excellent staff for Christmas?

Thank you so much everyone!

OP posts:
Fortysix · 15/10/2019 11:51

Absolutely prioritise your children and making things easy for you.
Do not travel the four hours there and back on Xmas day.
Do not be guilted into going to see your Dad - he will be fine.

Have had the pleasure of DM being in three separate places at Xmas time. The staff do an amazing job but those resident in the home with dementia, in my experience, don't really bother that it is Xmas. They do take part but not the way they would have done when they were well.

Seriously, you have more than 'earned' the right to spend all Xmas day at home with your immediate family unit. Do not buckle Grin

If DM is being awkward, leave her to to go visit DF on her own and get herself there and back. Take a step away and for a change put yourself first.

Presents for staff: We do individual bottle of Prosecco at £2.50 a go and hand out to staff who help DM especially -including night staff. We also leave special notes thanking night staff as they get missed out.

FinallyHere · 17/10/2019 16:21

Re Christmas presents.

We have experienced two different homes now. In both, any presents are added to a pool, which are then allocated to staff by a raffle in which all staff are entered.

But surprising at first, but on reflection seemed fair.

HC4U · 21/10/2019 14:23

Hello again, thank you for the posts and words of wisdom. I feel abit overwhelmed with everything at the moment again and I just want to concentrate on my own family as I feel honestly I have never properly done this while there has been drama with my Mum and poor Dad. I just feel a bit deflated today with it all and sad. Take care all!

OP posts:
thesandwich · 21/10/2019 14:59

hc4u sending you🌺🌺 your dad is being cared for. Your dm has made choices. Put your family, and yourself first. Also could a taxi take her to the home on Christmas Day?

Fortysix · 21/10/2019 15:09

I genuinely don't think 15 years ago my parents wanted to become drama llamas but since my DC were 7 and 5 their repeated poor decision making impacted heavily on those around. (That was the year they moved 40 miles away from any known relative or friend even though they were in their mid 70s.)

Every year it ramped up a gear. All the things we warned them about did start to happen ... bogus con men at their door extorting (and receiving cash), falling in the garden and being left on the ground unattended for four hours on a cold January night, both parents caught by the police wandering on a motorway - at separate places-after a car breakdown ... The list is very long.

I think we tried to protect my two DC but in hindsight their Grandma and Grandpa dictated an awful lot of our weekend time. However, looking back, I wish I had been firmer and left my parents to their own devices a bit more.

My poor Dad died and my mum was sectioned right in the middle of my DC's important exams when they were 18 and 16. The timing was inevitable. Now at 22 and 20 my DC are away from home studying both a minimum of six hours away. They come back frequently and we are still visiting mum in her care home.

While everybody's situation is different, OP, I can see parallels. Christmas is really meant for your immediate squad. It sounds awful but let your parents reap what they sewed. Time with your DC's is precious.

HC4U · 21/10/2019 15:49

Thank you both, honestly tears in my eyes and yet I am seeing some clarity. I think its so true I need so much to let go and hold tight my own kids and hubby. I just need to stop feeling guilty if I don't be at the beck and call of everyone.

I so identify with your post fortysix and you know as I read it, it dawned on me that I would hate my kids to have negative feelings towards me and their Dad as a result of me always putting my parents and their behaviours first. It really is time to let go in my HEAD firstly.
Thank you for the sentence poor decision making as that really does ressunate with me . Family life with our kids really is short!

the sandwich thank you for the flowers! Flowers right back at you.

OP posts:
ChilliMayo · 21/10/2019 16:10

Did you get the mobile?
I work in a residential setting and some of our families live abroad. What we've done to facilitate contact is buy a secondhand iPad at CEX, just something that is capable of FaceTiming so that our residents can FaceTime (with help and supervision) their relatives. The fact that they can see each other and hear voices from off screen too makes a lot of difference, and of course the screen size helps a lot too as opposed to a phone. No SIM is necessary if the home has a WiFi network.
I used this with my aunt who was bed bound 350 miles away (I was her next of kin). When her carers arrived they would do her personal care (so her hair was floofed up for her public appearance!!) then they would FaceTime me so we could chat while they prepared her meal. It made a lot of difference.

thesandwich · 21/10/2019 17:11

Similar story to forty six. Ils moved to the back of beyond in late 60s. Fil has massive stroke just before dd started high school.
Elderlies have featured since.
Put yourself first.

Fortysix · 21/10/2019 17:19

Chilli that is a great story and DA's carers sounded top drawer.

HC4U sometimes our parents condition us to put them first. It's hard to break free and realise there is an alternative. This absolutely is your moment to jump ship.

I may be over stepping a little her but remind yourself constantly it was your dad's decision to marry a much younger woman so the age gap was always going to kick in. That was their joint initiative. It's absolutely not your job to resolve the challenges your mum now faces. Don't get sucked in as a substitute.

Try for a new normal to only think about your parents for 15 minutes a day and visit your dad once a month. You can do it!

HC4U · 21/10/2019 21:20

Thank you everyone. I have said it to the staff again about the mobile phone and there is no problem from there end, so I need to get that sorted, although I think the larger screen device would be a better option. I cannot thank you enough for the advise all of you as its great to have "sensible" comments to have me think about and turn them into actions. I think that fortysix you have summed it up for me I need to establish a new normal. I haven't rang my Mum for the past week and that has been hard for me but I have done it and I now need to do these things and not feel bad and set it up in my head only ring when I am able too and only engage on topics that are not going to cause me stress. Plus your not overstepping you have given me something to think about. My life shouldn't be about trying to fix theirs.

Thanks again................

OP posts:
MereDintofPandiculation · 22/10/2019 09:25

Similar story to forty six. Ils moved to the back of beyond in late 60s. While agreeing with what everyone is saying in this thread, I don't agree with the comments on "poor decision making". You spend your life compromising because of jobs, children - especially in the 1950s, 60s, when marriage and children happened earlier and chances to travel were much less - retirement is your chance to fulfil some of your own dreams, not to find yourself a town-centre retirement flat close to your family (who in any case may well move in the next 20 years) and start living like a 90 year old. 60s and 70s may seem on the cusp of senility and immobility when you're in your 40s and 50s, but it won't seem like that when you get there (especially if, like me, you are supporting a parent approaching their 100th birthday).

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