To visit - or not to visit?

[Brucie]

Since Jan has been in care I have tried to visit her every day; we've been together for 39 years altogether and I couldn't do anything else.

One or two other friends have visited her on occasion, but most people have been conspicuously absent for the three years.

Some of these have been close family - sisters, nieces, etc. I've gnashed my teeth about this, but accepted that it is their loss. Jan is in a very advanced condition now, but is still such a lovely person.

The line people give is often "I want to remember her as she was" or "I just couldn't bear to see her like she is now".

Well, last weekend I drove for 3 hours to pick up her sister to drive her the 3 hours back to see Jan. [then to stay over a couple of days to get more visits in, then to do the 6 hour round trip once more]

As it was the first time for 4 years she had seen Jan - and last time Jan could walk, talk, see, comprehend [mostly] - it was bound to be a shock as all of these faculties have gone now. There were tears, of course.

At the end of 3 visits her sister said "I've been such a coward, but it is terrible to see Jan like this". She also said how glad she was that she had visited her, that it made her feel better, not only for having made some contact with her sister, but also for having been able to see that everything is being done for her sister that could possibly be done.

If anyone reading this has hesitated about visiting someone who has Alzheimer's or another dementia, why not just give one visit a try?

 

[adele78]

Hi Bruce, I have enjoyed reading your letters about Jan over the past few months since I first logged onto this site.

I absolutely agree with you about visiting. It seems that all the visits are left to me, even my close family members don't seem to want to go and see mum. I think it is as if she has already died. It makes me quite angry that it is all left to me go and visit. Even old friends that she has had for many years don't seem interested anymore and they know that I would gladly pick them up and take them to see her.

On a cynical note, when the time comes for mum to pass away, I will watch with interest how many of these absent friends attend her funeral! The same thing happened with my dad and I couldn't move for people 'paying their respects' at his funeral - too late though.


Adele

 

[kate34]

visiting

I sometimes only visit my father once a fortnight. Other times I go every week. He is only a couple of miles away in a private nursing home. I am facing many issues about his condition, and most of them relate to the process of grieving. If I do visit, I usually only stay around 20-30 minutes. It DOESNT mean i love him any less or that i dont care about him, far from it. I just find it incredibly hard to see him in this pitiful state and I know my mother does for certain. I dont blame her for not visiting him as she is facing her own grief and if you have any doubts about relatives visiting or not perhaps they feel the same way. It is an admirable strength you show in visiting in the frequency that you do, others simply cannot do it. Not knowing your relatives I cant comment on their motivation but I can guess it might mirror something of my own. It is bloody hard to see someone you love in such a state and very demoralising to not be able to make the connection with that person in the way that you once did. I know this message may show a selfish inclination but grief is a personal issue and people have the right to deal with it in the only way they can, and it varies widely, given that we are after all unique. Dont blame your relatives for not visiting unless you are pretty certain of their reasons.

 

[Brucie]

Hi Kate
I agree that it is up to each individual to decide whether or not they can handle visiting, and how often they can/will make it.

My comments about family in my case were not about MY family, but related to Jan's own family, her elder sisters; she was the 'baby' of the family. While there is huge pain in seeing someone you love in such a condition, I would argue there is no-one more affected emotionally than the partner of long standing. Ergo, if I can make it, then occasional visits by others... well, as you say, it is their decision.

I probably would not have visited any other relative in the same condition with such frequency. The relationships between parent and children, husband and wife, and between siblings are all different, and different for different people.

I simply took the view that, no matter how painful are the visits and the grieving - I'm almost 10 years into grieving now, so I don't need any tips on that subject, nor on the difficulties, frustrations, angers, desperations - I could not bear to think that Jan might , in some corner of her being, feel that she had been abandoned.

Kate, for each of us this is a private hell and we do what we must to be able to handle it, and if it is hell for me, the one thing I can't bring myself to even contemplate is just how bad it is for Jan, who has no escape whatever. That would drive me crazy.

My best wishes.

 

[kate34]

visiting

Its true there are different ways of handling the situation. My intention was not to preach about grieving, but simply to highlight in general terms the difficulties it brings.

 

[kate34]

visiting

The only other thing I would say, is it is all too easy to make judgments about people and in this cruel disease that has affected us here, we should not be persecuted for not visiting. We can only cope with so much. I dont know how aware my Dad is of things, I will never know but all I can say is I know the man he was and he has gone forever.

 

[karen_white]

I can understand the difficulty in visiting a relative with dementia and I to have lost the Father I knew and loved.
We were a very close knit family who enjoyed getting together regularly, but I see them all very rarely since Dad went into his nursing home.
For a time I felt no emotion sometimes when I visited Dad and stopped doing so as frequently as I did as I wanted to cut off my feelings of loosing someone I love so much.
But, a lot of my visits now are not done for me.
No one knows what someone with dementia is really feeling and I too worry that Dad feels we've abandoned him.
My mum finds it difficult to get to see him every day, but he still means the world to her.
I can only manager 20 - 30 mins 3 / 4 times a week, but you don't know how much that means, not only to the patient and their partner, but also to the other people in the home who do not get visits for anyone at all. Just a kind word / little cuddle or a 2 min chat goes such a long way.

 

[Nutty Nan]

brief visits

Karen is so right: just a few minutes mean so much, not just to the 'patient', but the relatives and carers, too! My husband is still at home, but even here, every brief conversation, a friendly face, a neighbour popping in, makes a difference. In fact, it is easier for everyone to have/make a short visit with a few happy messages now and then, rather than a couple of hours with longer intervals. These conversations are 'self-perpetuating', in that it is so much more difficult to refer to various topics of conversation after long gaps.
Having said all that, I understand that everyone deals differently with these problems: my older daughter pops in daily and always has something to chat about to her Dad, whilst my younger daughter (both grown up) has always been somewhat in denial, does not like discussing Dad's problems, and even when she visits occasionally, is unable to engage in a conversation with him (as I mentioned above: she has nothing to refer to, and it would take her longer to explain something he has not heard about before). They both care, but each of them has a different approach.
Carmen

 

[Nel]

Not to Visit

Hi Everyone,

I too have the same dilemma, my sons who are 18 & 20 do not visit their grandfather much at all. They say it's not that they don't care but cannot handle the disease or the environment of the care home and other residents. Whilst I respect their decision it sometimes gets to me as it tears me apart when I see Dad on a 'bad' day and I still go whenever I get a free hour because I love him dearly and have to work through the pain each visit brings.
My Newphew refuses to go under the guise of not handling the situation, but I know for certain this is an excuse, my only help is my lovely niece who is a single parent, works part time and still manages to get there, is it a woman thing?
When my Dad eventually passes away, they will all be stood there in tears with flowers abundant, grieving. But like the song says, 'wish I could have told him in the living years'............

Nel

 

[Brucie]

Like it or not, women have traditionally been the carers and men can find that an excellent reason for getting 'off the hook' in these situations. But that does not mean that all men or, indeed, all women, fit the pattern. I've known men visit their partners/relatives conscientiously and women who don't go at all.

The first time I inspected the assessment centre where my wife was to go, I was terribly upset - by the environment, the patients, the smells. You have to get beyond that, if only for the good of the patient. Jan had to go there and I could not bear for her to think she had to face it alone. The same goes for her time in the care home, now.

The patients at my Jan's home are all individuals still [what else would they be?]. They all have pasts, they all have individual characters [though they may not be the same as they once were], they all benefit from someone treating them as normal - whatever that means! I cherish small conversations with people I have never known in any other way; I feel better for seeing whatever reaction my being there creates.

The home where my wife lives is warm and welcoming, and modern. The staff are amazing in their concern for their residents.

I feel I am a better person for having gone through the pain barrier of visiting. I am more compassionate with people with other illnesses, and with people generally.

I understand why there are those who are unable to visit, but rather feel they are selling themselves short, and are missing an opportunity to grow. Besides missing out on seeing their loved one/relative!

Ultimately, each person has to make their own decision, though.

 

[Margarhett]

I do know what you mean Bobby has been in hospital for 2 months and his brother has been only once to see him, his sister-in law who works at the hospital Bobby is a patient has not been in at all. Bobby knows everyone who goes to visit and enjoys visits and has good conversations with his visitors.
So they cannot say "I want to remember him".
Bobby told me he was upset by some peoples reaction.

I can understand your sadness at peoples reaction and not visiting, believe me I have seen it all as a nurse and some people can be so selfish.

Best wishes to both you and Jan.

 

[Jackie]

Hi,

I live in Kent, commute 5 days a week into London, and my mum is in Devon, and I did visit every other month, but I have not been to visit since Jan. The reason because "I just cant!"

To me my mum has already died, the 'shell' that I visit does not know who I am, and all my feelings and emotions are shut down, the thought of driving 5 hours just to get there and then another 5 hours to get home fills me with dread.....

Perhaps if I was single and did not have my own family then things may be different and I may have moved to Devon, why do not move Mum close to me she has a freind that sees her everyday and the home is fantastic..........

Everyday she is in my thoughts, everyday I check this site for new information to try and help in any other way, everyday the fact that I can not force myself to visit her at the moment is on my conscience. 24/7 she is in my thoughts but as selfish as it may seem I NEED TIME FOR ME & MY LIFE TOO ..........

I know I will visit her soon, but just not yet!

 

[Rosie]

To visit or not to visit?

I visit my mother when I can this being once every two week's, I feel guilty that I don't visit more often. When I visit I chat , play her favorite music, smooth cream into her skin and generally fuss her . It gives me pleasure, however small a gesture , spraying perfume on her skin, making her smell lovely. My mother alway's took pride in the way she looked, her clothes, hair but now she is practically bedridden, the staff in the hospital she isin spoke to my dad and he agreed that dressing my mother every day was causing my mother distress, so now she is permanently in nightie's. I have two brother's and one sister and out of the four of us only myself and my brother visit's. My Dad is wishing for an "end" to it all, I will continue to visit my mother until the very end even though this terrible illness has taken the spark from my mum I want to be there when she finally passes on, I know I will most probably will be alone me and my mum everyone else has been worn away by the sadness and heartache of these terrible year's, even though the illness is progressing and my mother is deteriorating quite quickly now, I am still relieved when she seem's "a little better" as the ward staff but it, I am hoping and praying my mother will slip away peacefully in her sleep and that when it finally happen's I'll be there for the last moment's before she is finally free of this illness forever.

 

[Geraldine]

I'm lucky in that Mum is close enough to visit 2 or 3 times a week. Sometimes the visits are very upsetting sometimes Mum is quite sleepy, I take everyone as it comes.

Sometimes there are flashes of my old Mum and this makes it all worth while. I am an only child but am lucky in that some of my friends come with me or some of Mum's friends occasionally and family from Birmingham. I take my son, 10, with me 2 or 3 times a month and my husband also visits when he has a Sunday off.

We cannot know what is happening inside our loved one's minds but even if our visits give an instance of relief from the turmoil surely it is worthwhile.

I nearly forgot to mention that the home Mum is in is so welcoming the staff are almost like a surrogate family!

regards

Geraldine

 

[karen_white]

I could not agree with you more Geraldine.
We don't know what's going on our loved ones minds, but I'm sure that even though my Dad can longer express his feelings he knows that we visit and that must bring him some kind of comfort to him.

No matter what kind of pain I'm in, seeing my Dad like this, I can't begin to believe what Dad has gone through. As long as he's around, I'll be around to help him through this. I'd never leave him without anyone.

Great that you Mum's home is very good to you Geraldine. Sadly the nurses at Dad's home are very regimented and don't like us visiting as much as we do. We can never comment on Dad's care either as they have a go at us that we don't know what we're talking about that they're doing a good job looking after Dad. I'm never allowed to ask about Dad's day or what he's eaten without being treated like a child.

 

[Brucie]

Hi Karen

It is very sad that the people at your home are so unhelpful.

Those at Jan's home welcome visits as often as one likes, at any time of day or night, for as long as one likes.

I have full access to her records - indeed they keep them available for me - and also to details of her prescribed medication.

I often comment if this or that is not as I would expect, and they listen and act on what I say [unless I'm working on too little information, in which case they bring me up to speed].

They ask for my advice on Jan's food, and also recommend any personal care items or special clothing she may need.

Jan is on 1-to-1 care so I always have a 15 minute care log available, plus a log of her mood from hour to hour.

Anything else I need they will dig out for me.

If I request any intervention, they also organise that. So, on Friday I am going with Jan to the hospital to have her eyes tested. I asked for this as I want to investigate having her registered as blind. I believe that her eyes work, but that the neural connections don't permit her to see. If she is registered blind then she won't pay interest on her tiny investments.

Have you estalished a good working relationship with the home manager? I found that to be the key to everything else! I did the same with the regional manager for the homes group.

I also maintain close relationships with the staff. As I visit so regularly, they tend to think of me as one of them anyway.

 

[karen_white]

At first the home mgr very so supportive. I am one of 6 brothers and sisters (although one cannot visit as she lives in Australia. Mum visits every day and the home nurses were initially wonderful.

Dad's been at the home since March 2003. Mum still even now finds it so hard visiting sometimes and is often reduced to tears. The only time Mum and Dad spent apart when they were married was due to hospital stays. My mum is totally lost now.

The Home Mgr did indicate that she was also a psychiatric nurse. When we would go and see her about Dad and how he was doing, she would talk about how the family was feeling as well. We were very grateful for her support. – This has now changed and she talks to us, but never listens.

But, we are still struggling with our feelings for Dad. We are a very close family & miss him so much. The Home Mgr can't understand why Mum cannot move on. The reason, she doesn't want to move on from her husband. I can’t blame her for that. Now the home mgr can get very aggressive with Mum (or any of us) when we are there, get upset about Dad. We make a point of never crying in front of Dad (as this would upset him), but when she sees us upset on the way out she will ask us to come to her office and give us a talking to about how we need to start distancing ourselves from Dad and that he will become more withdrawn into himself. She can be very cold. We are fully aware of what will happen to Dad and that he will never get better, only worse, but we find her coldness to us all hard.

I know that at some level the mgr even needs to distance herself from all what’s going on in her home. It must be so hard to work there day in day out, but it's also their job and they go on about how hard they find it and that there is violence, angry, aggression, etc, to deal with on a day to day basis... what does she expect from them.... they are not able to behave as they once did.

As Dad's VD has progressed she has been more forceful with Dad as well - as have some of the other nurses. On Saturday we took Dad out for lunch (bad move in the end). Even though it was sunny, there was a bit of wind so asked if Dad could have his coat on. Two nurses looked blankly at me & went and go his coat. Due to a recent stroke Dad does not have good use of his right arm and it hurts a lot of the time. I asked for help in getting his coat on & they tried to yank his arm through it. It would have hurt me had they done that to me, let alone Dad. I asked them to stop & that I would drape it over his shoulders in his wheelchair and thanked her anyway. They again looked at me blankly and walked away. She said not a word.

On returning the home mgr opened the door my sister went to take dad into the living room & the manager said to me to take dad into the garden as it cool out there. My sister didn't hear & the manager proceeded to call her stupid (!) until she manoeuvred dad into the garden. My sister and I were both offended, but you can't face up to this woman, as she'll come down on you like a ton of bricks. We also don't want Dad's care to be affected by our making a fuss.

It's a shame as we try and do as much as we can so as to not intrude on their care when we're there. We have to come after 1.30pm in the afternoon - NO EARLIER as instructed. And they don't like it when I visit Dad straight after work - sometimes I get there at about 6.30pm - they hate this. We always contribute bottles of sherry to the home for the patients and regularly bring things in for the nurses (chocolates, wine, cards), as we know they are generally doing a good job for Dad.

We have thought about moving him, but some of the EMI units in our area are terrible. I wouldn't allow my dog to stay in some of them.

 

[Jackie]

Karen,

I really think you should rethink the home that your dad is in.

The Home Manager sounds like a nightmare and someone in her position really should be more understanding to say the least and as for the nurses that is totally unexcusable.......

Is this a council run home or private?

You must stand up to this Home Manager as at the moment it comes across as a form of bullying and if she is doing that to the vistors I would have to ask myself how is she treating my dad????

This is not a form of care this sounds like a prison!

Sorry to be so blunt but if this was the 'care' provided to my mum I would be hitting the roof!!!!

 

[karen_white]

Thanks for your reply Jackie.
We would like to move him, but we've visited other EMI units and even got their inspection reports off the web and some are disgraceful.
I see where you're coming from though. We do need to do something.

The home is privately owned so we have thought about speaking to the owner (we met him last year and he's very nice). Not sure he knows what's going on. She can be very controlling.

All in all the home is clean and Dad is fed well - in general we know Dad is well looked after. We just can't help picking on such things that are really not on.

He went through a stage of not eating at all and they kept a check on every mouthful he had. On the other hand, if we wanted to look at the chart we'd get a mouthful about how they are doing all they can and if Dad doesn't want to eat......

We worry about how a move would upset him as well. He has got very used to the people he has in his quiet day room and didn't even like it when my husband visited with me last week as he hadn't seen Dad in a while and Dad felt very wary of him and got upset in the end.

 

[Brucie]

The problem is obviously that there are just not enough good care homes - or good care staff - to risk offending what seems to be a poor example of nursing care. It could be a frying pan into fire job! Think of any guilt one might feel then!

Nurses and doctors have to be objective to do the worst elements of their jobs. The good ones also have empathy. Because of shortages, poor ones can get elevated quite highly in the 'profession'.

One of Jan's consultants sounded as if she might have been related to Karen's care home manager! She tried to bully me regarding having Jan put into care. I had her thrown off Jan's case. Since then the consultants have been very good and understanding. Bad apple, perhaps.

While the truth is that, at some stage, relatives do have to move on with their own lives, it is up to them to know when the time is right for that. It does no good at all to bully them.

To call a relative 'stupid' would, to me, be a complaint which I would elevate to the person above the care home manager in the hierarchy.

I too would be interested to know if the home is private or council....

Might be a good idea to keep notes of days and such happenings as documentary evidence can be very useful.

Take things slowly otherwise.