• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Reluctant passenger on this roller coaster ride

CardiffGirlInEssex

Registered User
Oct 6, 2018
217
As some of you will know, I’m in the middle of dealing with problems with both my parents. Dad, who does not have dementia, is still in hospital following a fall and severe UTI in early September. This leaves Mum, PWD, at home alone. She’s in Cardiff, I’m in Essex and I have no siblings.

It really is a roller coaster ride with both of them, and COVID is making it all so much harder. I cannot visit Dad at all, so rely on a short call from him each evening, He is utterly fed up, it’s becoming increasingly clear that he isn’t going to regain any meaningful mobility and the next battle there is likely to be around getting Social Services to agree to fund a residential care placement instead of making him go home with a “four calls” package. The latter would almost certainly be a disaster as Mum cannot grasp that he really is unable to stand or walk and will just harangue him. He will be stuck in either bed or chair with no sane company if he goes home, he is now willing to consider that a care home could have more advantages than disadvantages but of course nothing is going to move quickly and in the meantime he is stuck.

Meanwhile I have Mum wanting me to go and fetch him home. I have been with her for a couple of days this week and I got this several times a day. She is actually coping far better at home alone than anyone thought she would, but she doesn’t like being in the house on her own at night and her night time hallucinations seem to be getting worse and bothering her more. She was quite unhappy when I explained that I can’t see her now for a few weeks because of the Welsh lockdown, she can remember that I’m not going, but doesn’t remember that other people (who she knows quite well) will come and do the shopping and laundry for her. You all know too well how wearing the constant repetition is, the strain of trying to constantly appear cheerful when you really want to scream, the frustration of trying to get the PWD to understand a simple explanation. I love the person my mum used to be but I really don’t like the person she is now all that much. I never expected to be dealing with all of this at once, and certainly never thought I’d be looking at dad going into a care home first. And I hate the long drive which of course I have to do alone with all the COVID restrictions that apply.

And of course the guilt monster is my constant companion. Guilt that I don’t always handle situations with mum as well as I should, guilt that I’m relieved to have a good excuse not to go for a few weeks. Guilt that I have to ask others to provide the support I ought to manage (even though I know that’s totally unrealistic given the distances involved). You all know how it goes. I know guilt is a pointless emotion especially when I can’t actually change anything. That is probably the worst thing, I want to be able to take control and make everything OK, but that’s impossible.

One thing I’m grateful for is the insights into facilitating a move into a care home that have come through this site. Dad is easier for me than most of your situations because if he goes, it will be by his own agreement and I can have the logical discussions with him. It’s been really useful to know that care homes are more often than not successful outcomes and that company and regular attention can really improve quality of life. My nightmare will be getting Mum to understand that if Dad goes into a care home it will be because it is the best thing and he isn’t being kept prisoner against his will, she already thinks that’s what is happening with the hospital! So if anyone has ideas on how I might sell this to her if and when it happens, I’d be really keen to have them.
 

Phelippe

New member
Dec 21, 2018
6
Hi!
My situation is entirely different - and so much easier than yours...
But I’ve just come across your posting from yesterday and there’s enough in common (the word ‘guilt’ though I’ve not used it, sums it up) that I feel like responding!
i’m pretty new to all this - including how the IT on the site works, so I’m going to look now to discover if I can find previous posts by you to find out if you have siblings or children since ‘family’ is pretty central for me in dealing with my PWD (shorthand I’ve not come across before and rather like, even though my wife seems to be at a much earlier stage than your mum).

You were on at 7.00 am and have made 201 posts. Wow!

I’ll leave this now (I don’t know the site etiquette) just as a ‘hallo’. There’s no ‘answer’ here to anything you raise. Maybe this is all about finding another friendly, sympathetic, human voice when you need it?
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
217
Hi @Phelippe , yes it’s as much about feeling there is a “listening ear” from others who understand the experience, as the advice that these fellow rollercoaster riders are able to give. I am an only child and have no children myself, this is both a blessing and a curse. A blessing because there are no arguments about what to do, no “invisibles” full of useless advice and no practical help. A curse because there is no one to share the load. My parents are very old, 93 and 85. Dad has one sister alive, but she is not local. He has a cousin who is local and who helps out a great deal, indeed I am relying on her to support mum in this next few weeks, but she is 74 herself though so far very fit and able. Mum has 5 siblings, all with their own health problems and none of them close enough to help out. My husband is also significantly older than I am, so far he is fit and has all his marbles, but I can’t just abandon him for long periods especially with COVID restrictions making it Impossible for his children to spend time in the house, or him to go to them.
 

Phelippe

New member
Dec 21, 2018
6
Good to receive a response! I’ve just seen that @GrannyG (I have no idea how to reference someone here, or how to correspond with them) posted something for my attention in “Compassionate Communication” a while ago...exactly what I still need to work on.

I’m going off-line soon - outdoor lunch with my daughter in Muswell Hill (though it’s beginning to rain). We’re needing to deal with the accumulated ‘stuff’ of 47 years: does anyone want anything and what will we need? Memory, of course, and nostalgia and sentiment all playing their part!
 

Palerider

Registered User
Aug 9, 2015
2,115
North West
I don't think guilt is a waste of energy, but its something we shouldn't focus on for too long. Guilt allows us to re-think situations before we decide any finality.

I was just wondering @CardiffGirlInEssex if now is the time for your mum to move with your dad into care if that is possible? Obviously I don't know all the detail, but it would be the easiest approach all round. Of course getting your mum to see that this as a good move might not be so easy and what would your dad want? Just a thought.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
217
I don't think guilt is a waste of energy, but its something we shouldn't focus on for too long. Guilt allows us to re-think situations before we decide any finality.

I was just wondering @CardiffGirlInEssex if now is the time for your mum to move with your dad into care if that is possible? Obviously I don't know all the detail, but it would be the easiest approach all round. Of course getting your mum to see that this as a good move might not be so easy and what would your dad want? Just a thought.
Thanks @Palerider , you’re right about the guilt thing. Mum is, I think, better at home for now. Longer term, who knows, I suspect the only way she’d go to a care home would be if there was a crisis and she had to go to hospital, something she currently says she will refuse but of course if the fall or whatever happened there may not be a choice.

Dad needs sane company and I doubt many homes, if any, funded by the LA would have services for dementia patients as well. Though if they both went, it would be self funded and we’d be selling their house to pay for it in which case they could possibly go to the same one but in different sections.

I’m trying to not over think this for now, it will be weeks yet before Social Services assess Dad and anything could happen in the meantime. At least I know he is safe and looked after, he’s in a specialist ward for frail elderly people with mobility problems. He is bored, because he can’t have visitors, but he is safe. Mum is probably as safe at home as anywhere for now because although she doesn’t always recognise the contents as hers, she does know the layout.
 

Palerider

Registered User
Aug 9, 2015
2,115
North West
Thanks @Palerider , you’re right about the guilt thing. Mum is, I think, better at home for now. Longer term, who knows, I suspect the only way she’d go to a care home would be if there was a crisis and she had to go to hospital, something she currently says she will refuse but of course if the fall or whatever happened there may not be a choice.

Dad needs sane company and I doubt many homes, if any, funded by the LA would have services for dementia patients as well. Though if they both went, it would be self funded and we’d be selling their house to pay for it in which case they could possibly go to the same one but in different sections.

I’m trying to not over think this for now, it will be weeks yet before Social Services assess Dad and anything could happen in the meantime. At least I know he is safe and looked after, he’s in a specialist ward for frail elderly people with mobility problems. He is bored, because he can’t have visitors, but he is safe. Mum is probably as safe at home as anywhere for now because although she doesn’t always recognise the contents as hers, she does know the layout.
Yes I understand. Not quite the same but when dad was dying in hospital I asked him if he wanted to come home, but he couldn't he said he felt safer in hospital. Of course this is because mum had changed so much she no longer understood what was happening to him. There in that situation their ways parted. I guess there comes a point where inevitably our parents take seperate paths. Such a difficult situation for you but as always with dementia things become the best of a bad situation. It seems to me (and this is just me airing ideas) that perhaps for now getting your dad sorted is the priority although there's a chance things with mum may escalate
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
217
Yes I understand. Not quite the same but when dad was dying in hospital I asked him if he wanted to come home, but he couldn't he said he felt safer in hospital. Of course this is because mum had changed so much she no longer understood what was happening to him. There in that situation their ways parted. I guess there comes a point where inevitably our parents take seperate paths. Such a difficult situation for you but as always with dementia things become the best of a bad situation. It seems to me (and this is just me airing ideas) that perhaps for now getting your dad sorted is the priority although there's a chance things with mum may escalate
Yes, I'm kind of focusing on getting Dad sorted and just making sure Mum is ticking along OK. It's good that in my working life I was used to dealing with all kinds of problems and all kinds of people on the phone and by email. There's a lot of both those things going on to help manage this situation.

I have been reading your other main thread @Palerider and just want to say how sorry I am that you're dealing with your own very tough situation in such a difficult time pandemic wise. It would be hard enough in normal times, but to be doing it now with the visit restrictions and the general lack of human contact is just awful. I hope you are able to settle in your new home and that some solution can be found to allow you to spend time with your mum.