What is the centre.? Do you mean the care home.? The advice I got was not to visit for a couple weeks. Yes it was difficult to stay away and I never stopped thinking about him. At the end of that time I cannot say for sure if that was right or wrong thing to do. Never will know now. But I feel that every time our loved one is visited in the beginning it unsettles them. They will all be different and some will settle sooner than others.Hope you had good nights sleep.xx
Two years to get this bad. What now?
- Thread starter AL60
- Start date
Sorry Al. I missed your post about the centre. I thought she was in the home that she went to when you had respite. You said she settled in well there. Maybe she will be able to go there,? xx
The assessment centre is the step before a permanent care home, isn't it?
As you say, they want to see the whole range of her behaviours, so that they can make the best decision.
Hope today's visit has not been too stressful for both of you.
Hi. It's an nhs dementia inpatient service contained within a new mental health hospital. She was sent there almost three weeks ago when she was sectioned. It's a nice environment for her but it's a hospital all the same and nothing like home. I've no doubt she will be moved somewhere nearer home once the 28 days are up. We will be having a best interest meeting next Friday morning. I've been making the trip most days and the hardest part is leaving at the end of the visit. All she ever talks to me about is where the car is parked and can we go now. It's the worst feeling ever, especially knowing she probably won't be coming back home. Al.
This was my mantra @AL60 However bad life was for me it was even worse for my husband.
I'm so sorry its come to this for you. I'm almost reliving the emotions.
Yes GrannieG. But we have to do it. For a loved one as well as ourselves. So awful though. Chin up Al. IT WILL GET BETTER.xx
I am going to say something. I hope it will not offend anyone, it is not intended to offend it is just an observation. Could this not visiting recommendation which seems to come up on TP be a partly a cultural British response to adjusting to institutional living?. It seems a similar to the advice given parents when sending their children to boarding school in the Uk( like when my husband went to boarding school at six and the school recommended that his parents did not visit or see him until Christmas break, on the premise that he would adjust better)
My younger sister has finally gone into a care facility in New Orleans, although she has HD she is with Alzheimers patients. She is three weeks into this new living situation. Her young sons have been caring for her for the last 5 years, they are 30 and 33. Their father died 5 years ago this month, so they took over her care. They are visiting her everyday and the younger one is going at bedtime and reading to her as he did at home. None of the professionals there have objected or discouraged them for being with her daily. It is a great comfort to all concerned, they have told me she cries when they leave but is glad to see them each day. They feel better keeping a close eye on her care.
Is it just a cultural difference? I think if and when Nick went to a home and I wanted to visit I would do so.
It is very hard to know what is right....as yet I have not had personal experience. I will go with my gut.
My younger sister has finally gone into a care facility in New Orleans, although she has HD she is with Alzheimers patients. She is three weeks into this new living situation. Her young sons have been caring for her for the last 5 years, they are 30 and 33. Their father died 5 years ago this month, so they took over her care. They are visiting her everyday and the younger one is going at bedtime and reading to her as he did at home. None of the professionals there have objected or discouraged them for being with her daily. It is a great comfort to all concerned, they have told me she cries when they leave but is glad to see them each day. They feel better keeping a close eye on her care.
Is it just a cultural difference? I think if and when Nick went to a home and I wanted to visit I would do so.
It is very hard to know what is right....as yet I have not had personal experience. I will go with my gut.
I wonder if it is cultural. Parents used to be stopped visiting children in hospital because when they left the children were upset. It was concluded that the children were upset by the visit. When children were observed with no parental visits they were quiet and compliant. In fact they were withdrawn and damaged by not seeing their parents. But I’m not sure we can equate this with dementia care. In children it is a normal part of development, to need a constant primary carer. But we cannot draw too many comparisons between child care and child development, and the progress of dementia.
Sorry, might not be making too much sense, I’m thinking as I write, rather than before I write! In short, sometimes I think the carer needs to take a break from visiting for a while, for their own sake. How many of us have moved a loved one to care from a position of contentment? For most of us, it follows a crisis of some sort...from which we need to recover.
Dementia gets progressively worse...a child develops towards independence...the opposite. The growing needs of a dementia patient demand the care of a team, not one person, so maybe we need to let the team see what support they need to put in place?
If only it were all academic. It is the feelings we have that make it all so hard to cope with.
Sorry, might not be making too much sense, I’m thinking as I write, rather than before I write! In short, sometimes I think the carer needs to take a break from visiting for a while, for their own sake. How many of us have moved a loved one to care from a position of contentment? For most of us, it follows a crisis of some sort...from which we need to recover.
Dementia gets progressively worse...a child develops towards independence...the opposite. The growing needs of a dementia patient demand the care of a team, not one person, so maybe we need to let the team see what support they need to put in place?
If only it were all academic. It is the feelings we have that make it all so hard to cope with.
The pain, confusion, fear, anxiety and bewilderment experienced by a person with dementia is something that one cannot imagine. The nearest I can think of is remembering something really frightening from childhood. Who do you want in that situation? It’s usually your mother. If your parenting was poor or nonexistent then your feelings of loneliness must be terrible. I know my husband is thinking of and mentioning his mother far more now than he ever did. I remember clearly an occasion being denied the presence of my mother by someone who thought my mother needed a rest and the pain inside was terrible indeed. It hardened me up even at that tender age and I knew that I was on my own. So even with dementia I think the inner core of personality remains until the very end, and even then the remnants show in rage, distress and mania and they are completely unable to ‘harden up’. Perhaps it’s a balance of the two, visiting as much as the individual can but staying away to preserve oneself. The pain of separation is just one of the endless things we have to endure for the sake of our PWD. I had a day out with 3 old friends for lunch yesterday and said that I had to get back by 4pm because my daughter needed to get home. One of them said that I was still putting ‘them’ first and should think of myself. You will all know that that’s impossible because you do what you have to do and the same applies when they are no longer living with you, you do what you have to do.
Thank you Grahamstown. I think we become almost hardwired to put others first like you describe and I see nothing on earth wrong with that. It is the bet of humanity. Thank you. Kindred.
Dearest AM...I too write to work out my thoughts and position. I take your points, and certainly the carer who needs the break after a crisis must look to their own health and recovery. But the carer who is moved to visit should do so without any negative feedback from staff. I agree with you regarding the need for a team of carers. That is really what has to happen for us to survive the progression of the disease.
As I said before , I will go with my gut when and if the time comes for me. I must trust my instincts.
I think it might be more institutional than cultural.
The institutions may have found it easier for themselves if they didn't`t have to comfort distressed patients, residents, schoolchildren if their family stayed away for a while and we were so used to obeying the rules of the establishment it became accepted as the norm.
The institutions may have found it easier for themselves if they didn't`t have to comfort distressed patients, residents, schoolchildren if their family stayed away for a while and we were so used to obeying the rules of the establishment it became accepted as the norm.
@kindred quite right, we have to do what we have to do and that must vary from person to person depending on their needs. Some people need more recovery than others and I must admit it’s hard to know when you are going to collapse yourself. That seems to be when other people start saying ‘you need to do this or that’. Only the person can actually decide unless they have no capacity and if visiting or not visiting is right for the person then that’s okay. I think flexibility is the name of the game, we cannot be too prescriptive where dementia is concerned and I think it would be just as wrong to say you can’t visit as to say you must. Dearest G (may I say that?) you have battled through and you feel, quite rightly, that you are doing the right thing by your dear one. Others just cannot do exactly the same and nor should they. The problem is the ‘authorities’ and if what they say goes against better judgment, one really has to trust them to comply. Lack of trust is the greater evil in caring for your partner when they are being cared for by others. That comes over loud and clear from all who have posted here. Finding the right place is vital and these days can be difficult.
Thank you so very much. I have only ever wanted to live a life in which fidelity and usefulness are key. But sometimes, as you say, even the person cannot know when they are going to collapse. I certainly didn't!! I would not want anyone else to battle as I did, I am still suffering the mental and physical consequences! I would want everyone else to call time long before it was called for me, if you see what I mean.
There is another dimension for me. I did nursing training long ago before academia summoned, and the very first group I nursed as a cadet were the elderly mentally infirm. In those days it was thought to be delayed shellshock (mid 1960s). I can see now that they were almost all suffering with dementia. But I loved being with them and nursing them, and I feel so comfortable being with people with dementia at Keith's home, and regarded as one of the team! Helping as one of a team is so very different from being the sole carer imprisoned at home. No of course we can't be prescriptive about any aspect of dementia, I so agree with you. So very good to talk to you, thank you with all heart. with love, Geraldinexx
Once again hi. I know I shouldn't but I can'thelp but not visit most days. I feel that my need to visit is far greater than her need to be visited. With the exception of last Sunday when she was more like her old self, I get the feeling I'm wasting my time making the trip. All I get is , where's the car or is my washing upstairs. Then comes the aggression, the shouting and the hitting. I can't believe how fast all this has come on. But the aggression is reserved for me alone. All the nursing staff get the smiles, I'm sick of hearing what a lovely woman my wife is
. Don't worry, I get it. It's what dementia does. I've learned so much about the disease yet i still know nothing. I felt the need to go and visit today as it's our wedding anniversary, 42 years and on her they're lost. It means nothing. Once again as i go to leave she wants to go too, its not going to happen. I, with the help of the nursing staff haveto slip away like a thief in the night. I've got to admit, it's the worst thing ever. I dont mind saying im going again tomorrow, I know that I'm going to get nothing from it , only the satisfaction that I've at least tried, but I will go, take the abuse and once again sneak away at thaend of the visit. That3 it then until Friday and then im definitely having the weekend off.. I need it.Al.
. Don't worry, I get it. It's what dementia does. I've learned so much about the disease yet i still know nothing. I felt the need to go and visit today as it's our wedding anniversary, 42 years and on her they're lost. It means nothing. Once again as i go to leave she wants to go too, its not going to happen. I, with the help of the nursing staff haveto slip away like a thief in the night. I've got to admit, it's the worst thing ever. I dont mind saying im going again tomorrow, I know that I'm going to get nothing from it , only the satisfaction that I've at least tried, but I will go, take the abuse and once again sneak away at thaend of the visit. That3 it then until Friday and then im definitely having the weekend off.. I need it.Al.Once again hi. It's wrong, I shouldn't have gone. Yet I had to go just to prove to them what I've had to put up with for the last god knows how long. Now it's done. I'm not going to go again until Friday morning. I'll never forget the look on her face as I left, shouting my name as I went to leave, four of the nursing staff trying to get her back through the doors. It's so cruel, just because the nursing team there want to see her behaviour.
It needs to be done but there must be a better way. Al.
It needs to be done but there must be a better way. Al.
Cannot believe what this "centre" is putting you and your wife through. I think its a disgrace. If you don't visit not only you, but your wife will improve. I really believe that. Every time you visit you put yourself through a very painful experience. Every time shes sees you she is reminded of the fact that shes not with you and doesn't like it where she is. I so disagree with this "new" way of doing things.It could take months for her to calm down. Please is there no other way for her. As I have said before my husband was a very angry man after I left him there. I didn't visit for 2 weeks and it was so painful. I phoned most days and asked how he was doing. When I started visiting he was much calmer and they said he was being a bit more "helpful" with the personal care. (As in keeping still.) It took nearly 6 months to get him properly settled. Now 14 months later he is a lovely man again. He is always smiling and appears contented. He reacts well to all the staff and they say they really love him as he is such a happy smiling man. I thought you said your wife was doing ok in a respite situation. Is there no hope you can get her back there.? I am so sorry Al. It is heartbreaking for you but I don't know what else to say. I so hope things will get sorted soon.xx
Recent Threads
-
-
-
Hello from a new member - Mum with dementia
- Latest: My Mum's Daughter
-
-
-
-
-
Members online
No members online now.