Dilemma ! Don't know what to do know

[Martarita]

What a dilemma to be in , it's not good the care home has just informed me that because it's a residential and not EMI dementia nursing they can't cater for my husbands needs all though it is a dementia unit .so we've to try to find anther care home that has EMI nursing,the care home that he's in have a sister home that does that side of nursing as well as the general nursing care , there's a room in that one , we went to see it yesterday and yes it's very much like the one he's in but just a little bigger and longer corridors which myOH walks a lot , but and its a big but it's takes 30mins+ , the thing is I drive but not as confident as I use to be ,and I'm still not well I wouldn't be able to see him as often as I do now the management tell me there's not very many care homes that have this dementia care nursing in our area and it all seems to be cut and dried,it will happen very soon ,now I really think I very much want to see if at all possible I could only try round our area just to see what there is so it wouldn't be so far away for me to travel , I just wouldn't get as often as I like to , I've been trying to cope with the awful decision about him going into a care home , and now it's started all over again , and I was told yesterday that my husband gets upset quite often which I know he does, but one of the carers said to me it's because she thinks he's more aware of what's going on,so that has made it 100 time worse for me to deal with ,but I was so ill with the physical and emotional illness that I couldn't carry on
caring, now I feel I should have pushed myself choose what the consequences would have been which I've told you all before without repeating myself again and I still not back to full health yet I know I'm not strong enough to cope with the walking and the bizarre behaviour again , what to do I feel I'm being backed into a corner and time is running out Maybe I should try and get in touch with the social worker that's dealing with our case and to tell him my worries,I really could do without this just at this moment in time.sorry for bothering everyone ,I really do think your thoughts with my dilemma would help me to get my head round it THANK YOU SO MUCH Take care X

 

[marionq]

He needs to move and you need to rest and recover. Can you treat the move to the sister home as a short term solution? That would give you a breathing space to look for somewhere more suitable nearer to where you live. I know that settling in takes time but as it is the same company presumably they speak to each other and will be informing the new home of his likes and dislikes.

Try not to beat yourself up too much about this. These are the painful decisions which come with being responsible for another adult and they often don't go smoothly.

Best wishes.

 

[canary]

Unfortunately there are a lot of homes that describe themselves as "dementia homes", but they only want the early, easy stages and once they get to a certain point they are asked to leave

Not all care homes are the same, though and you can certainly try other homes which are easier for you to get to. When you contact them, ask them what sort of behaviour they would not accept - the answer you want is that they will look after him up to the end and only violence which could put staff and other residents at risk is not accepted.

These places may well have waiting lists, though, so you might find that it would be better for your husband to go to the sister home on a temorary basis.

 

[Sirena]

So are you saying that he is in a dementia home, but now needs a dementia nursing home? If so, it is true that they are comparatively few and far between, so a bit harder to find then just plain dementia homes, and you may find you have to travel a bit further to find one.

I know it's difficult but I agree with Marion, I would accept the placement and you can then take a bit of time to look around and see if there is anywhere suitable (and as good) nearer to you.

 

[Juliasdementiablog]

So sorry to hear this, what an awful dilemma you have to face again! My aunt's family had this problem. The care home that insisted she move at the later stages of the disease because she needed nursing care are now more flexible. I understand residential homes can now do a lot of the work required under nursing care and as long as the home, social services and the family is happy, nursing needs can be accommodated. I wonder if you could push back with the home, ask them to accommodate your husband's growing nursing needs a little longer, while you recover and plan your next move. Nobody should be forced to move quickly in this situation, it's not in your husband's or your interests to move twice. Look at the mental capacity act, quote his rights, to social services and they might back you in your quest to keep him where he is for now.

 

[Bunpoots]

If I were in your position @Martarita I would give the Social Worker a call. He should at least be able to provide you with a list of suitable homes and an experienced social worker will know which homes are best for particularly challenging behaviour.

The home dad's social worker found for him was residential but they managed to care for the vast majority until the very end. I was shocked by the appearance of the home when dad first went in and wanted to get him out asap - but soon realised the staff were second to none and it was a good place for dad to be.

 

[Dosey]

Aw Martarita
Sorry you are in this terrible situation. I would contact your allocated Social Worker for help. Our social worker was great she phoned nearly all the care homes in our area, giving advice to which ones she would recommend. Unfortunately because OH was under 65 and doesn't have learning difficulties we we ended up only having one CH available. Luckily they do nursing care dementia to, so he won't need to move. We are at the same stage of this journey. He is due his 4 week assessment meeting this week, but thankfully they have said he can stay.
Try not to blame yourself, you have done a wonderful job. We can only do so much. You need to look after yourself now. Things will get better. Your OH will settle and your visits will be quality time spent together. Please keep posting here. It's good to get things off your chest and seeing things through other eyes helps. We often get so consumed by quilt that we don't accept that we have done the best we can. I cared for my OH for 7 years from diagnosis and held a full time job for 5 of these, until I had ill health myself after a knee replacement in March 17.
I try to tell myself that my OH would hate to see me suffer and my life on hold if he understood how things are.
Take care sending a big hug.
Rose

 

[Martarita]

If I were in your position @Martarita I would give the Social Worker a call. He should at least be able to provide you with a list of suitable homes and an experienced social worker will know which homes are best for particularly challenging behaviour.

The home dad's social worker found for him was residential but they managed to care for the vast majority until the very end. I was shocked by the appearance of the home when dad first went in and wanted to get him out asap - but soon realised the staff were second to none and it was a good place for dad to be.

Thank you Bunpoots I feel as though everything is stacked against me and I'm frightened and so very sad I'm hoping against all odds that the care home he's in at the moment will let him stay until we try at least to get him somewhere nearer but I don't really know about that until I've had a word with the social worker and the care home ,but I'm not holding my breath on that one ,they where trying to rush everything through but this was only Friday when they assessed his needs so I really am hoping they will listen to me ,I'm so so worried that this has happened I feel so overwhelmed with everything that's going on I don't seem to be able to think straight and I need to stand my ground with this one as hard as it is for me . I will get in touch with the social worker tomorrow and see what he can do for me .im really sorry but I do need some advice from people who understand my situation .Thank You.xx

 

[Martarita]

Aw Martarita
Sorry you are in this terrible situation. I would contact your allocated Social Worker for help. Our social worker was great she phoned nearly all the care homes in our area, giving advice to which ones she would recommend. Unfortunately because OH was under 65 and doesn't have learning difficulties we we ended up only having one CH available. Luckily they do nursing care dementia to, so he won't need to move. We are at the same stage of this journey. He is due his 4 week assessment meeting this week, but thankfully they have said he can stay.
Try not to blame yourself, you have done a wonderful job. We can only do so much. You need to look after yourself now. Things will get better. Your OH will settle and your visits will be quality time spent together. Please keep posting here. It's good to get things off your chest and seeing things through other eyes helps. We often get so consumed by quilt that we don't accept that we have done the best we can. I cared for my OH for 7 years from diagnosis and held a full time job for 5 of these, until I had ill health myself after a knee replacement in March 17.
I try to tell myself my OH would hate to see me suffer and my life on hold if he understood how things are.
Take care sending a big hug.
Rose

Thank you Rose I'm finding everything so difficult it's one thing after another,but I really don't want him so far away I will find it really hard to visit him the way I feel now .so I'm hoping against all odds that the social worker will try to help me with it and maybe the care home that he's in now will try maybe just care for awhile longer it we see if we can get him a placement nearer I will get in touch with the social worker tomorrow and ask for help ,all this is just to much I for me it's so difficult to deal with , thought I'd just about got him settled but no it wasn't to be so hopefully the social worker might help me so I don't have to travel as I'm not up to it at this moment in time ,thank you for your comforting words they do really help Big thank you .xx

 

[Martarita]

So sorry to hear this, what an awful dilemma you have to face again! My aunt's family had this problem. The care home that insisted she move at the later stages of the disease because she needed nursing care are now more flexible. I understand residential homes can now do a lot of the work required under nursing care and as long as the home, social services and the family is happy, nursing needs can be accommodated. I wonder if you could push back with the home, ask them to accommodate your husband's growing nursing needs a little longer, while you recover and plan your next move. Nobody should be forced to move quickly in this situation, it's not in your husband's or your interests to move twice. Look at the mental capacity act, quote his rights, to social services and they might back you in your quest to keep him where he is for now.

So sorry to hear this, what an awful dilemma you have to face again! My aunt's family had this problem. The care home that insisted she move at the later stages of the disease because she needed nursing care are now more flexible. I understand residential homes can now do a lot of the work required under nursing care and as long as the home, social services and the family is happy, nursing needs can be accommodated. I wonder if you could push back with the home, ask them to accommodate your husband's growing nursing needs a little longer, while you recover and plan your next move. Nobody should be forced to move quickly in this situation, it's not in your husband's or your interests to move twice. Look at the mental capacity act, quote his rights, to social services and they might back you in your quest to keep him where he is for now.

Thank you for your advice I will do just that and hopefully they just might accommodate for a little while longer how I hope that they will I'm going to get in touch with the social worker and tell him how I feel about it all I really think they should give us a bit more time to see if we can get him closer to home as I'm just trying to get on my feet again with being ill hopefully it just might turn out ok or is that wishful thinking .Thank you so much for you reply .xx

 

[Juliasdementiablog]

Thank you for your advice I will do just that and hopefully they just might accommodate for a little while longer how I hope that they will I'm going to get in touch with the social worker and tell him how I feel about it all I really think they should give us a bit more time to see if we can get him closer to home as I'm just trying to get on my feet again with being ill hopefully it just might turn out ok or is that wishful thinking .Thank you so much for you reply .xx

I am so glad that was helpful. Whatever happens you need to take some time out to care for yourself, even if it means not visiting for a week. Without reading your previous posts, I'm guessing your illness is related to stress, worry and heartbreak over what's happening to your husband. Over the 14 months after my mother was diagnosed with vascular dementia, and a very fast descent into confusion and cognitive decline, I was very ill three times. Two times this resulted in sepsis and hospital admissions. I am normally very healthy. Whilst still caring for your husband, think hard about what you need, and do whatever you can to get it. Please.

Take care, Julia