Can't take much more, Dad nor me

[lilysmybabypup]

Excellent thoughts Moonflower and turbo, I am familiar with the concept of the squeaky hinge. I didn't think about the fact some people could have their names down but not be ready. I suppose our visits this week will help us to decide and, fingers crossed for the right place to be available.

Thanks so much, xxx

 

[Mamsgirl]

Hi Stephanie,
Been wondering how you got on today. A few random responses -

It's hard trying to consider what will be best for Dad, the closest home has an excellent reputation but it's Russian, accepts all people, but I wonder whether it would feel a little alien for him.

Russian as in predominant language spoken and food served? As long as they're willing to provide a diet your father finds acceptable, the only language they really need to be fluent in is kindness. So often my SF's carers speak with heavy accents. A beautiful, statuesque Somalian carer told me when I was still a bit precious about body functions that while she uses her hands, she really does the job with her heart.

A couple of others that seem to have specific programs addressing dementia are a little further away and it will be a bit of a challenge getting Mum there since she can't drive and public transport will be too complicated. If she went in every second day it would still place quite a burden on me again to provide transport.

Wondering what stages of dementia the programs target. Is your father likely to benefit more from a program than regular visits from his three lovely women? Proximity is really important if you want to be able to just pop in, and I like to do this to I keep a close eye on care; and my SF feels less vulnerable knowing I sleep with the phone next to me and can be with him in seven minutes if need be.

Feeling overwhelmed with the responsibility of finding him a suitable place and there are several homes closer to Mum that the SW doesn't really recommend, not sure if we should still bother seeing them, she has suggested a few based on comments of clients who have only been happy, and had no complaints.

Does the SW recommend you avoid these homes because the care is inadequate or does she only recommend places she's heard good reports of I wonder. Sadly, I can't imagine many of us, by the time we need permanent care, being particularly happy or complaint free anywhere.

Hope things are looking up,
Toni x

 

[lilysmybabypup]

Hi Stephanie,
Been wondering how you got on today. A few random responses -



Does the SW recommend you avoid these homes because the care is inadequate or does she only recommend places she's heard good reports of I wonder. Sadly, I can't imagine many of us, by the time we need permanent care, being particularly happy or complaint free anywhere.

Hope things are looking up,
Toni x

Hi Toni,
Thanks for sharing your thoughts, and for your concern. I had a very rough day today, ended the evening in floods of tears and distressing my family so much. It was very confronting, and when I sat down to dinner with my husband and daughter I felt such overwhelming guilt thinking of how Dad would be without any of us in the evenings, with strangers, and my heart ripped in two. I know I'm sounding so dramatic and over the top but I can't banish these thoughts and images from my mind, and they're worse in the evenings when I think how he would sit with Mum at the dinner table and she would encourage him to eat. And at bedtime he would go off with Mum, she would settle him in their bed, then he would ask where she was sleeping, and be so content when she answered, right beside him.

My sister and I saw 2 places today, the first was looking the worse for wear and had such a smell, like faeces covered with a cloying air freshener, feel like I can't banish the memory of the smell from my nostrils. And the residents of the High Care section were sitting in the dining/activities room watching sport on TV. Some along the back were in beds, so sadly frail looking, some in wheelchairs, and a couple on chairs. None of them seemed to be watching the game and I asked if a member of staff stayed in there to watch them but the manager said the staff look in on them regularly as they tend to some other residents in bedrooms. My sister and I spent some time talking to the manager and he seemed caring and honest but I just didn't see the staff engaged with any of the residents, they seemed to be bustling to and fro. We walked away with my sister saying she thinks she needs counselling and I said I cannot contemplate leaving Dad in that place or any other like it. Another thing the manager mentioned was that they have a couple of residents who get up from their chairs but are falls risks, as Dad would be, and they use a soft restraint, with family permission, and staff take them out and have a walk with them every two hours. Not happy with that plan at all. I think if Dad tried to stand and was unable to do so he would have a very loud and angry opinion.

The second was the Russian one, a couple of minutes away from Mum, not that she could get there on her own anyway. It was so different, clean and fresh, no smell except lovely food, we were amazed that it didn't seem to have a problem with odour, the earlier place felt like it had permeated the walls permanently. It had a much better atmosphere, bright, larger rooms, although residents were again watching some TV (???), except it was Russian, not that Dad would be able to engage even if it was in English. There are 35 people on the waiting list so I don't know whether it would be viable, but adding his name wouldn't hurt.

Tomorrow we have 2 more, one is a state-of-the-art, place, only about 3 years old and seems to be well set up for dementia with sensor mats and so on. One concern we have is that he can try to get out of bed at night if he thinks he needs the toilet and, even with limited mobility, could again fall. Obviously staff can't watch every bed so the sensor mats would provide some peace of mind that someone would know if he tried to get up. I'm quite aware that shiny, sleek, new, and all the bells and whistles don't necessarily make for a caring and loving environment, so we shall see. The woman from there said they actually have a space available next week but it occurs to me it's odd they don't have anybody else on a waiting list. The other place we are seeing is only minutes away from this one and I only know it's run by the agency who did Dad's home care package and they were amazing, kind, organised, sensitive, went out of their way to help Mum beyond their expected duties. If their care home is run in the same way we would be quite relieved.

I spoke to a Dementia Advisory Service lady today who knows us well and she said it sounds like we should just try respite somewhere first and see how we all handle that, and maybe give us more time to find the right place. She also reminded me that nothing is set in stone, if we aren't happy or Dad isn't settling and we find it's not working there's nothing stopping us from taking him out and home again. I'm feeling the weight of worrying about Mum and knowing her health may not hold up, she seems to be the least affected by all this but she has never been prone to showing her fears or worries, not unemotional, she's extremely loving and generous, hugs and kisses, but just not a cryer. She says she is ok but who really knows, I'm sure she is also feeling the grief and loss of the husband who was once by her side, even in business.

Once again I have rambled on like a crazy person and it's no more than thousands of others have had to confront, but our dad has been the most wonderful and loving man and it feels like we have decided to remove him from our family. I know that we can remain as involved as we've always been but it simply is not the same. Let us see what tomorrow brings.
Stephanie, xxx

 

[lilysmybabypup]

After a difficult week, in so many ways, we have settled on a place for Dad. The planning and paperwork is quite daunting and makes it all seem too real. Although I want him out of hospital quickly, I think him being in hospital has made the whole concept of a permanent home placement off in the distance and a little unreal. I fear I shall have many emotional rides over the coming weeks.

Had an aunt (lives next door to Mum and Dad), and her daughter come to visit Dad today just after lunch. We had been wondering when they might come, but when we walked in Dad's room he was snoring loudly in the bed, after a very draining day of delirium and no sleep yesterday. I was so glad he was sleeping finally, it has been his pattern in the hospital, a cycle of "normal" days, where we can chat and he naps on and off, days where he is almost on another planet but won't sleep, followed by these deep sleep days.

When my aunt and cousin walked in they both burst into tears and said that was why they've put off coming. I had such a day of torrential tears yesterday while with Dad so I felt so relieved and relaxed that he was sleeping soundly, and I ended up hugging and comforting them. As we chatted, they would start to cry again over things we said and then compose themselves again, it was a little like I've heard happens when someone reveals they have a terminal illness to someone and end up comforting that person. I'm a little concerned how my children will deal with it all too, they're adults and have been with Dad enough to know what he's been like, and to the hospital too, but the moment of realisation that he is not going home ever again may still hit home hard. Nobody really knows how Mum is going, I feel she's a little numb and spending more time worrying about my sister and myself than her own situation. Mum is a practical soul but it will still be a hard time for her. When I left her today she hugged me so hard, she's so tiny and we are all quite tall, so funny, and said she doesn't know where she would be if she didn't have us. Put simply, I said she and Dad have been here for us for all our lives, through thick and thin, always a steady rock of love and security, and now it's her turn to be cared for.

Feels like we are all on a train, travelling along in a steady rhythm, then we pull into a station, everything changes, we pull out in the new rhythm, and so it goes on. Sadly, all train journeys must terminate and we don't have the timetable or the route but so relieved to have TP passengers on the train too.

Stephanie, xxx

 

[60's child]

Hi Stephanie
Your post put me in mind of my lovely Dads funeral. I spent most of the time comforting everyone else. Felt totally responsible for their distress. I think it was a long time after that I properly grieved for him. So many bottled up emotions suppressed with coping with all the paperwork etc
Your family have been though so much recently and have had to make some heartbreaking decisions I am sure you all feel very fragile. Good you have eachother to lean on even if you feel that you are all ready to topple over.
Yes, I agree dementia is like a train journey. A very long one with many halts in service, cancelled timetables and poor service along the way
Thinking of you and your family Dear Stephanie
Dee x

 

[Mamsgirl]

Hi Stephanie,
So very glad you've found somewhere suitable. Hang in there xxx

 

[KentJude]

Hi Stephanie I haven't posted to you recently as I'm of little help to you at this stage of your challenge as I was never successful in finding a good home for mum so can't advise. But others have plenty of great advice and it sounds as though you have a couple of decent options, so that's heartening, albeit with waiting lists.

As one of the managers said to you, nothing has to be forever or is set in stone. You can move your dad any time, and just view this step as being temporary for now. And you have a great advantage in having a big family who can take turns on checking on your dad, and sharing the emotional toll. My problem was it was all down to me and that was why I couldn't handle it so brought mum home.

I know it's incredibly hard and a huge responsibility whatever the situation. I did need counselling at the time, so can understand your sister thinking about it! But hopefully with such a strong loving family with you, you'll get to the top of this next Everest and find much smaller foothills on the other side.

Hope you're managing to eat and sleep enough. It's the best diet isn't it!?

Thinking of you with a big virtual hug from Kent.

Jude xx

 

[at wits end]

Thrilled for you that you have found somewhere you like. That must be a great weight off your mind.

It is rather difficult though when you have to console visitors who have been avoiding the inevitable, if they had come earlier or more often it wouldn't have been such a shock to them. I expect a few of their tears come from feeling guilty about trying to avoid it.

SO hard for you.

 

[lilysmybabypup]

Hi Stephanie
Your post put me in mind of my lovely Dads funeral. I spent most of the time comforting everyone else. Felt totally responsible for their distress. I think it was a long time after that I properly grieved for him. So many bottled up emotions suppressed with coping with all the paperwork etc
Your family have been though so much recently and have had to make some heartbreaking decisions I am sure you all feel very fragile. Good you have eachother to lean on even if you feel that you are all ready to topple over.
Yes, I agree dementia is like a train journey. A very long one with many halts in service, cancelled timetables and poor service along the way
Thinking of you and your family Dear Stephanie
Dee x

I hope you've had a chance to work through your own grief, Dee. While I feel I would rather Dad leave us before he gets to the absolute final stage, and save him any more agony or distress, I can't imagine how that day will be, the absolute worst day of my life. You're so right about the poor train service, must be Sydney's cityrail. Thanks for your caring support. xxx

Hi Stephanie,
So very glad you've found somewhere suitable. Hang in there xxx

Thanks Toni, I am definitely hanging, by the fingernails, but not on the ground yet. Thanks for your encouragement. xxx

Hi Stephanie I haven't posted to you recently as I'm of little help to you at this stage of your challenge as I was never successful in finding a good home for mum so can't advise. But others have plenty of great advice and it sounds as though you have a couple of decent options, so that's heartening, albeit with waiting lists.

As one of the managers said to you, nothing has to be forever or is set in stone. You can move your dad any time, and just view this step as being temporary for now. And you have a great advantage in having a big family who can take turns on checking on your dad, and sharing the emotional toll. My problem was it was all down to me and that was why I couldn't handle it so brought mum home.

I know it's incredibly hard and a huge responsibility whatever the situation. I did need counselling at the time, so can understand your sister thinking about it! But hopefully with such a strong loving family with you, you'll get to the top of this next Everest and find much smaller foothills on the other side.

Hope you're managing to eat and sleep enough. It's the best diet isn't it!?

Thinking of you with a big virtual hug from Kent.

Jude xx

Thanks Jude, you poor thing, caring should never be a solitary thing. I hope the virtual support has been a help. My sister said today she is feeling drained emotionally from phone calls, forms and so on. I have born the brunt of hospital but she has done much of the admin, all with a sick 2 year old. Poor baby. Yes, good diet, I am hardly eating right now but that won't kill me. Feeling the love from gorgeous Kent. xxx

Thrilled for you that you have found somewhere you like. That must be a great weight off your mind.

It is rather difficult though when you have to console visitors who have been avoiding the inevitable, if they had come earlier or more often it wouldn't have been such a shock to them. I expect a few of their tears come from feeling guilty about trying to avoid it.

SO hard for you.

Thank-you at wits end. Yes, it really is a relief to have found somewhere for Dad. The admission forms really show the difference between a CH and hospital, they want to know every tiny thing about Dad and his care and current situation. While being a load of paperwork, I like the fact that they consider this important, because it really is. Hospital just fumbles their way through and make up their own rules instead of following Dad's lead.
My aunt has been next door to Mum and Dad forever and they have an afternoon cuppa every day, so she has been there for the whole ride, but I think she just felt the finality of it all when she saw him. My cousin and I were only children together until I was 15 and my parents suddenly shocked us all with a sister for me, and our families did everything together. They are both extremely close to Dad so I really think it just hit them hard. There may have been a tinge of guilt in there too. A hard road but TP friends make such a huge difference. xxx

Thanks all, as usual, your concern and wishes help immeasurably.
Stephanie, xxx

 

[sunshine13]

Hi Stephanie,
Been wondering how you got on today. A few random responses -



Does the SW recommend you avoid these homes because the care is inadequate or does she only recommend places she's heard good reports of I wonder. Sadly, I can't imagine many of us, by the time we need permanent care, being particularly happy or complaint free anywhere.

Hope things are looking up,
Toni x

Dear Stephanie
Just read your posts and the replies - I cannot begin to imagine how you cope. I thought my situation with Mum and Dad before he died in May. Your's is so much more difficult. It may help (a little bit) to know that we went through a similar situation with Dad in hospital, when he had repeated UTIs and pneumonia. Eventually we found him a lovely Care Home where they would (and did) avoid hospital admission if possible. He did still get pneumonia, but they were able to deal with that along with his dementia. He did get distressed, but they were so loving and kind and gentle, and were able to settle him in a way that we, as his family with all the complications of that, weren't always able to do.

My mum was sectioned last August, and the secure unit was not ideal. They did their best, but she is so much better now she is in a Nursing Home. Still very ill, but is comfortable, secure and loved. She doesn't seem to be aware of anything, is nursed in bed all the time, with no responses at all, but at least she has stopped her distressed crying.

What I am trying to say is please don't reproach yourself at all. This is a horrible illness, every experience of it is different and you are doing your absolute best and then some more! It isn't easy finding a Home, we were lucky that we had a fantastic Social Worker for both parents. Yes, one of them did look about 12 (even carried a satchel!), but he was great. Mum had a lady one, around my age, who was also great and supported the whole family through the awfulness of Sectioning, mum's distress and finding her a Home. I hope you have the same experience and can rest easy that you have done your best, that your Dad is being looked after by people who care, not just doing their job. Such places are out there. My advice is to visit and get a feel for the place, but you have probably already done that. I was really impressed that the staff in my Mum's Home always treat her with respect, even when they don't know I am outside the door. (I do a lot of that!!)

Best wishes. Love and a huge hug. xx

 

[lilysmybabypup]

Hi sunshine,
Such a happy name. I've learned since posting on TP that we each have our own struggles, our own horrible days or weeks, our own trials, and our own painful choices. When I read your situation it felt much worse than mine, odd how we all feel the other person's troubles are harder than those we face. It's good that we can gain some perspective by sharing here and feeling a little less lonely and isolated.

I'm glad your mum is content and you're able to feel comfortable that she's well cared for, and you can live life. There's so much guilt in caring, whichever way it's done, but I suppose we must make what we believe is the best choice for our loved ones, and then get on with it. It's a shocking waste if dementia robs not only the sufferer, but the carers of a life.

Thank you for sharing, and I wish you well as you love and support your mum through this stage.

Stephanie, xxx

 

[Mamsgirl]

Hi Stephanie,
Expect you're drowning in paperwork, caregiving and trying to sew woven name tapes on socks at the moment, but just want you to know I'm hoping you're ok.
Toni x

 

[KentJude]

Me too, can imagine it's an incredibly busy time, and hope that the move is going as smoothly as it possibly can.

Xx

 

[lilysmybabypup]

Hi Stephanie,
Expect you're drowning in paperwork, caregiving and trying to sew woven name tapes on socks at the moment, but just want you to know I'm hoping you're ok.
Toni x

Hi Toni,
Yes, paperwork is done. Yesterday Mum and I packed Dad's bags, very confronting, my sister grabbed them to drop in to the home on her way to picking up her little son from her MIL. The CH does all the name tags, was wondering how socks were done. Dad goes in on Thursday but worried that it may not be for long My sister was at the hospital yesterday while I was at the CH for last minute paperwork. She spoke with the doctor, Dad has been sleeping most of the time, hardly eating or drinking. I am convinced he's over medicated with Risperidone because the hospital found him a little distressed, still having occasional episodes of delirium, and he's currently being given 2 and a half tablets a day. It feels like a vicious cycle, the meds cause constipation, sleepiness, poor appetite, and difficulty walking. He's fading away, and the dr says we need to be prepared because Dad seems to have given up and won't last long in his current state. He has also had oral thrush which I believe has affected his appetite and how things taste, but he's so deeply asleep it's hard to give him the treatment in his mouth. I'm frustrated, angry and heartbroken, wondering why they are drugging him up so much. Then they try to give him an enema because he's constipated, and he gets very agitated, so they upped the meds again!!!! Is it just me who sees the stupidity of this treatment?

I'm really desperately hoping things can get sorted out in the CH. I hope I'm not delusional and clutching at straws. I am simply not ready to lose Dad yet. It was just 4 weeks ago that he was home, able to feed himself, continent, able to walk from room to room with a walker, with no aggression or distress. Now he's wasting away, unable to walk, incontinent, refusing or unable to take medications, not eating or drinking, and has a permanent expression of pain on his face.

I keep picturing him alone at night asking where Mum is and it's tormenting me. Why is this so hard?

How is your SF? Maybe if he can come back from the brink, so can Dad.

Thanks for your thoughts and concern.
Stephanie, xxx

 

[lilysmybabypup]

Hi Jude, just saw your post. Thanks for remembering us. I think this forum is such a lifeline.

Stephanie, xxx

 

[flowerpot]

Hope all goes as smoothly as it can with the move to ch for your Dad. This brings so many memories back to me of my Dad......

You sound like you have everything under control but remember to look after yourself too.

I have found TP to be a brilliant place even if I don't post much just reading what other people have to cope with puts it all into perspective for me!

Take care and thinking of you xx

 

[turbo]

Hello Stephanie, I have been thinking about you and your family.
I hope that your dad will improve once he is at the care home. It must be such a shock for you all that he has deteriorated so much since being admitted to hospital. Hospitals just do not seem to be able to care for dementia patients.


turbo

 

[Mamsgirl]

Oh Stephanie, what I wouldn't give to ease your poor heart!
Let me try to give you some hope by doing a "before and after" of my SF.
Before aged care:
Months and months of intermittent hospitalization connected with back to back outpatient medical treatments I need a tranquilizer to even think about. Poor man was under the care of more "specialists" than I can name. Each specialist eventually, but not before plenty of invasive investigation smacked up against the brick wall of anaesthesia, his brave but failing heart just couldn't take another assault. So. Off to the nursing home with him, I'm being grossly unfair but it felt like "we've done our best but if you can't cut, poison or irradiate it, sorry but you're in for an unpleasant departure." After all, they did give him a 30% chance of waking up, and it was his choice to refuse surgery! The man who left hospital was assessed as high care, barely mobile, dying from heart failure, cancer, dementia and with constant pain and nausea from gallstone exacerbating pancreatitis. Frail, incontinent and emaciated
After:
By his one month review he was assessed as low care!!! Continence regained, mobility improved to the point he could walk to the park with his walker, and appetite improving although weight continued to fall. He was grumpy to be there, but it was definitely helping. In the following month I met with his CH doctor, a lowly GP, who looked at SF's bloods and noticed some liver enzymes were five times what they should be. Sadly this indicated a tumour, but in balancing the most troublesome of the enzymes this marvelous, marvelous man has completely relieved the "pancreatitis" symptoms that the "specialists" would not have relieved even if they'd been able to operate! The CH doctor treats only aged people, and follows his professional hunches.
We know we don't have long left Stephanie, but the CH has undoubtedly given him more time and comfort, and I pray it's the same for your Dad after his complex needs are assessed in an aged care setting.
Don't give up hope, Toni x

 

[lilysmybabypup]

Flowerpot, I'm so sorry if I've brought up any painful memories, you seem to have suffered far more than your fair share of struggles. Thank-you for your support and hopeful encouragement. I feel like Dad and Mum need to be top of the looking after list right now. I have my lovely family to support me.

Turbo, thanks for your concern, it really has been a shock and we hope Dad will have a chance to improve in the CH. It feels like a new direction as this disease takes us all on this ride, i just wish there was another way to get off.

Mamsgirl, thanks for sharing your experiences, how traumatic for you all, especially your poor SF. Isn't that the worst part, seeing them going through so much that feels unnecessary, uncomfortable, unsettling and undignified? Why do these specialists seem to look at a whole person and only see the sum of their parts? And I am also puzzled by the way not one nurse has said a single word of comfort when I've walked out of his room in tears. I realise they see so much pain and loss, they must be immune, but I haven't, this is my first time.
It's remarkable the way the right care and a wise and compassionate medico are able to do so much. Dad's CH isn't in our suburb so we've had to select a GP from their suggested list to attend Dad. It's a little bit worrying to just choose a name at random but I'm hoping he will be more familiar with caring for people with dementia since he works regularly at the CH. Surprisingly, Dad's geriatrician has often felt like she has him on the expected path and is just following the usual pattern rather than looking at Dad's specific situation. I'm so glad you've had such good care and your SF is comfortable and happy, I think it's the most important thing at this stage. Thanks for all your kindness.

Thanks everyone, you help in ways you can't imagine.
Stephanie, xxx

 

[60's child]

Dear Stephanie
I have been wondering how you are all doing. I am so sorry your Dad seems to have deteriorated. Like you I cannot understand why hospitals feel the need to medicate frail patients so much. I do so hope that he will be better cared for when he is transfered. Looking at other posts it seems that improvement isnt out of the question. If I was very clever with computers I would send you a big bunch of "flowers" so please imagine the biggest bunch of your very favourites on your screen when you read this. You can add a box of chocolates and a bottle of wine as well if you wish ...