Taken Mum to Care Home :(

[angecmc]

Hi, thanks for posting comment. Yep, we have had some of the emotional blackmail you mention. ie When me and my lovely sis left Mum after visit last week, my sister hugged mum and said "Bye Mum, love you". To which Mum replied 'But obviously not enough or I wouldn't be in here" This was obviously upsetting, although we both know that isn't our lovely Mum talking - it is the disease. We were just telling staff that we were leaving, when Mum came hurrying down the corridor, moving quicker than I have seen in months, with no stick or walking frame. "Oh hello, where are you off to"? I asked. "I've just come to say sorry, I didn't mean what I just said". Cue tears all round. It is so sad that Mum is still aware of her illness, and has such moments. Although we know that when the dementia progresses there will be other worse problems to deal with.

Hi, I could have written this post it is identical to my Mums behaviour. We say our goodbyes in her room and by the time we are up towards the door, we hear Mums voice and like you say cannot believe the speed she managed to get there Like I said before just be aware that not every visit will go well. What I do now is if she is in an angry mood, I make an excuse to leave early ie have an appointment, if she is in a reasonable mood, I stay longer. It is not easy, it is a vile disease, take care of yourself xx

Ange

 

[Witzend]

Although we know that when the dementia progresses there will be other worse problems to deal with.

Often a case of dodgy swings and equally dodgy roundabouts. For ages I felt terrible to be dreading visiting my mother, but I did - it was an endless round of 'I want to go home! Have you come to take me home?' It was awful , my stomach would be in knots every time. But by then I know she wouldn't have been happy anywhere, she hadn't been happy at home, either, and she was so bad by then that a CH was the only option.

Roll on several years and visits are no longer at all stressful, not in that way, purely because she's so much worse, has no recollection of her previous home at all, and hasn't a clue who I am. The most I ever get is a very vague smile for the 'nice lady' who makes her cups of tea and brings her chocolate. Her eyes used to light up when she saw me, which despite the stress later used to tug at my heart, and it happened quite quickly that she no longer knew who I was at all. Her eyes now always have that 'dead' look.

It is all very hard and emotionally draining. I could never do it myself, i visit a lot, but sometimes I do understand those relatives who don't visit, or hardly ever do, because they find it so upsetting.

 

[Il Gufo]

Witzend

Just sending you big, big hugs xxxx

 

[Care_daughter]

Very similar as my dad

Hi, i can relate to your story, as I am living the same with my dad. He is been in a carehome for 3 months now. My two brothers are very little involved (seems similar as your brother..stucked in denial) and I am the only family member dad still recognizes. So for them, visiting and bringing things over, if they will do it, does not impact him as much as what I do o skip doing for him. He keeps asking for me and once I am there, he wants to keep me close at all times. I am surprised you have been able to say the goodbyes to ur mum. The CH advised me not to do it, so I always have to senak out. Sometimes it lasts for him searching me, and so others they distract him so he forgets.
I am now thinking of a plan to get dad for a ride, but I am really concerned if I do it one time, he will assume I will take him out everytime I visit. I will not be able to take him all the time. Where should I take him? A familiar or new place.
He still suffers a lot of anxiety, but is not violent. The CH manager supports the idea for him to change the routine and see how it goes. I know the clock is ticking (even though dad is only 69) and want to enjoy him as much as we can still being "ok".

Thanks and good vibes for you and mum

Hi, thanks for posting comment. Yep, we have had some of the emotional blackmail you mention. ie When me and my lovely sis left Mum after visit last week, my sister hugged mum and said "Bye Mum, love you". To which Mum replied 'But obviously not enough or I wouldn't be in here" This was obviously upsetting, although we both know that isn't our lovely Mum talking - it is the disease. We were just telling staff that we were leaving, when Mum came hurrying down the corridor, moving quicker than I have seen in months, with no stick or walking frame. "Oh hello, where are you off to"? I asked. "I've just come to say sorry, I didn't mean what I just said". Cue tears all round. It is so sad that Mum is still aware of her illness, and has such moments. Although we know that when the dementia progresses there will be other worse problems to deal with.

 

[Il Gufo]

Care_daughter

It's both a blessing and a curse to know that so many people are struggling with relatives with this dreadful disease. I don't know how advanced your Dad's dementia is - Mum was diagnosed with mild/moderate mixed (Alzheimers and vascular dementia) last February. I know that the disease has definitely progressed since then. I felt the same as you about taking Mum out for lunch last Friday. I wondered if it would make her feel even more upset, seeing people having a 'normal life', able to go back to their own homes etc. But then the alternative, of Mum never going out of the care home seemed worse, whilst Mum is still able to be taken out for lunch, shopping etc. I wanted to buy her new bed linen when she was still managing to live by herself, and vetoed the idea in case she didn't recognise her own bedroom. But then does that mean Mum can never have the pleasure of new things? So, have decided we will take her out whenever we can, will give a simple excuse - the weather, lack of time - when we can't. And will buy her new things for her room, new clothes etc, in the hope that the pleasure of having pretty things will off set the chances that she will be confused by them. We are all treading the same path it seems, trying to do our very best for those we love, and that it all we can do. Thanks for good vibes, am sending them back to you with a big hug too

 

[starryuk]

Morning, Il Gufo,
I know exactly what you mean. I go over and over with the same kind of thoughts...
However, I took mum out to yet another garden centre for coffee on Saturday. She seemed totally confused, but followed me round pointing at flowers etc. Said virtually nothing.
Then, on Sunday when I went to visit, she (who normally struggles to get any sensible words out) thanked me profusely for the outing, saying how much she had enjoyed it!!!! I was astounded she had remembered, let alone actually enjoyed it!
So, I agree, even if we don't get much in the way of response at the time or it appears confusing, we keep on trying for as long as possible.

 

[FarAwayDaughter]

This is such a brave thread. You are doing so well with everything!

My father is only 62 and his condition is deteriorating quickly. He cannot be left alone as he has taken to wandering and getting lost. Plus he now cannot control when he goes to the toilet, nor can he feed or wash himself. I feel strongly that he should be in a home rather than being looked after by my poor step mother and any gracious other family members and friends. I live a way away so am being no help whatsoever, but even if I was there, I feel that his level of need is such now that he should be somewhere else. I know that this is a very difficult thing to come to terms with so I am planting seeds delicately with members of my family so that when they are ready we can make the move. My step mum wants to live and care for him forever, it just breaks my heart.

My Dad did the emotional blackmail thing with me the last time I was down there. He was convinced my step mum was trying to kill him and he wanted to pay me to stay there with him to protect. He even started to have a panic attack when it was time for me to leave!

I wish your mother comfort and peace.

 

[Dazmum]

I do the same Il Gufo, my mum enjoys coming out with me, just to the local garden centre for a hot chocolate and a wander round and a chat, which she really enjoys. I also bring her home with me for the day; she used to live with us but doesn't recognise out home as hers at all, I think this makes it easier now. She doesn't seem to mind going back. As you say Starryuk, I'll do this for as long as I can. I also found out just yesterday that she has been on a couple of outings, just rides into the countryside, but she has enjoyed the change of scenery.

Farawaydaughter, it's very hard as you can see what should happen from the 'edge' as it were. I remember when I was going through the painful process of realising that for all our sakes that I couldn't look after mum here any longer, a wise person on TP said that placing someone you love in a care home doesn't mean that you can't care for them any longer; but the more difficult tasks are done by someone else, and you get to spend what will hopefully be more quality time with them, you have more patience and more time to be loving and caring. I took that with me, and I hope it might help your step mum x

 

[FarAwayDaughter]

a wise person on TP said that placing someone you love in a care home doesn't mean that you can't care for them any longer; but the more difficult tasks are done by someone else, and you get to spend what will hopefully be more quality time with them, you have more patience and more time to be loving and caring. I took that with me, and I hope it might help your step mum x

Wise words indeed. Thank you so much.

 

[CollegeGirl]

This might seem a strange thing to say, but I have enjoyed reading your thread, Il Gufo. There are so many positives that just shine out at me. I'm thrilled for you that the care home are actually listening to you and suggesting helpful things, moves and changes that just might benefit your mum. We are so used to fighting red tape it's like a breath of fresh air to hear this.

Posts like yours give me hope for the future, they really do.

xx

 

[Dazmum]

It does sound a really good home doesn't it. I recently had a meeting with the management at my mum's and although I wasn't complaining, I had a number of small niggles that they noted. They've taken on board and addressed the whole lot, from including her on outings down to removing old nail varnish when I haven't been able to. It restores your faith and trust in them to look after your parent when you can't.

 

[Il Gufo]

Visiting today

Good Morning. Just caught up on all your recent posts,and thank you all so much for your kind words. I'm going down to see Mum today, and taking an album and some very old photos. This is at the suggestion of the CH staff, who've said that it is helpful for those with dementia to be able to look back at pictures of their own parents, photos of their childhood and early adulthood. Most of the pics I've managed to find are a bit battered, but have scanned them onto my computer just in case they go missing Looking forward to spending time with Mum going through them today, and putting them in the album.
SIL is spending a lot of time visiting Mum, as they live only 20 mins away.Had annoying phone call off her last night, reporting on how Mum was yesterday (mostly positive), then asking how long I was staying today, as my brother wanted to visit. What she meant but didn't say was that it would be best that I had gone by the time he arrived. (Think you all know him, he's been invisible for the past few years). Whilst I'm happy for Mum that she has seen more of him in the past two weeks than she has in the past two years, I am not driving an hour and a half to only stay a couple of hours so that we don't cross paths I will stay as long as I bloomin' well like.
Farawaydaughter - It may be of help if you start researching CH's now, in the area you would like. The wonderful place that Mum is in was found by my lovely sister last March, shortly after Mum was diagnosed. She and her husband looked at several - some of which were so bad she cried when she left them. But then she found this one, and felt so good about it. We then put Mum's name down and felt that at least we had something of our choice in place. It's good to feel even a little in control when things are spinning out of control with our loved ones.
Thanks again to all who have posted on this thread, I feel like I have lots of guardian angels watching over me!

 

[starryuk]

Good morning Il Gufo,

I shall be keeping my fingers crossed for a good visit today. You must be feeling a bit less anxious now your mum is safe and not wandering lost around town etc.

Good luck
xx

 

[Il Gufo]

College Girl

Hi. It's not strange at all that you are enjoying this thread. When I first joined this forum I gained a lot of comfort just from knowing that there were so many other people in the same boat. And I'm flattered that you see so many positives in my story. I'm so lucky to have an extremely supportive OH, a brilliant little sister who can be tough as nails when she needs to be (I tend to get emotional and cry a lot), and my dearest close friend whose own Dad went into a care home a few weeks before my mum. She still has her dear Mum, but of course she needs a lot of support having 'lost' her life partner to this awful disease. Added to which her Mum fell ten days ago and broke her hip! We both say if our stories were in a soap opera on TV, critics would be shouting 'Too far-fetched for words"! But we battle on, support each other, laugh and cry together, and have the odd glass of wine or two. And of course I have my friends on this fab forum

 

[1954]

Good morning, I hope your visit goes ok today. I will be thinking of you

 

[Varandas]

I've been following your thread and being so inspired by your descriptions and positive attitude.
Looking forward to your next report and update
All the best

 

[Dazmum]

All sounds good Il Gufo! Don't blame you for staying as long as you like. Just a thought with your photos, with the scanned ones you can make an album using one of the online companies, such as Sn**fish (there are many others)! They are really easy to do. You can add text and there are always special offers. The projects are stored in case of loss or damage, they can easily be reproduced in the form of lovely books. Things do sometimes go missing in care homes and to lose precious photos would be so upsetting. The albums are good for Christmas presents too.

My best friend's mum has dementia too, so as well as here on TP I also have someone else who understands completely.

 

[Witzend]

As regards taking someone out, I would say do it as long as they seem to be getting any pleasure out of it, since there may well come a time, and it may happen quite quickly, when it's no longer possible.

Whenever it wasn't too wet or cold I would take my mother for a drive round Richmond park, which is quite close. She wasn't up to walking any distance, so I would just park somewhere with a nice view and take a flask of tea and a little cake or two. Or I would get her an ice cream - or all three. For quite a while she would enjoy it all, but later she would start fretting anxiously about having to 'get back' and of course no amount of reassurance did any good. Then, quite suddenly, she literally forgot how to get in or out of a car, she didn't know what to do with her arms and legs any more. So those outings are now a thing of the past. The only place she's ever going to go any more is either to hospital or a funeral parlour. Make the most of it while you still can.

 

[Shirley95]

Hello to everybody on TP - this is my first time posting on here - just needed to feel as though I wasn't alone! After 4 years of supporting our lovely mum in her own home, we have finally admitted defeat and placed her in a CH. Like many people before me it's a sadly similar story: mum was having more frequent interludes of not recognizing her own home and demanding to be taken home; she was having difficulty separating night from day and was eventually found by the police at 12.20am wandering around the area she lived in over 30 years ago, saying she had to find her husband, (Dad died not long before mum's Alzheimers was diagnosed). Her leg was covered in blood were she had had a fall and the weather was horrible that night - heavy rain and very cold. She is in a lovely home with excellent staff but now 10 days in, they are administering Lorazepam, which was prescribed by her GP in the 2 weeks before we placed her. She stands constantly by the front door of the CH, with as many things as possible stuffed into her handbag, shouting "You can't keep me a prisoner here! Open this door now!" The Lorazepam hardly seems to be touching her. This is the best EMI residential CH in my area and I'm terrified that they will say they can't manage her behaviour. She is only there at the moment for 4 weeks respite before they decide whether to let her stay or not. Please say a prayer that she settles, preferably without drugs, otherwise the future looks like a bleak succession of less and less quality carehomes.

 

[taurus]

Nightmare visits

My mother was diagnosed with Vascular Dementia soon after my father died in 2008 - she still hasn't got over his death and this seems to exacerbate her symptoms. My sister has been her main carer for the last 6 years as I have been in full time work - mother was in her own home with carers visiting several times a day so she was rarely alone apart from at night. She had been getting steadily worse not recognising that she was at home and asking anyone who visited to take her home. She got quite angry when she was gently told that she was home. She also stopped eating and drinking and kept falling over. She also kept saying how miserable she was and she did not want to stay there. We have been very lucky that up to now we have been able to afford to keep her at home but now she is no longer safe to be on her own and we cannot afford to pay for full time care without selling her house. She therefore moved to a CH on 25 Sept. The staff are very good and everyone is friendly and they are moving to a brand new building in a couple of weeks where the rooms are lovely - it looks like a 5* hotel. Problem is mother keeps asking why she cannot go home - we are telling her that at the moment she needs someone to look after her all the time. The staff say that she joins in the activities and although she spends her time sitting in the hall or wandering she does not seem too unhappy. Then we visit! - weekly at the moment as it is too distressing to go any more often although her carers still visit in the week. All visits have been stressful but today was the worst - she greeted us with big hugs and tears and then it started - why can't I go home, we tried distracting her with photos and she got cross and wouldn't look at them - there was no distracting her. She said she would never forgive us for putting her there. We said that we were worried about her and because we loved her we wanted her to be safe. She then said that we obviously didn't love her enough to leave her in a place she hated. She then got up (more sprightly than I have seen her in a long time!) and said "well you can just go away and I never want to see you again" and locked herself in the loo. (something she used to do at home if she got agitated!) So we left because by then my sister was very distressed and I just didn't want to stay and listen to such vitriol anymore.

Sorry about the long post but does anyone have any other ideas how we can try and make our visits more bearable - we don't dare take her out as she would probably refuse to go back!