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Finding it hard visiting

TriciaBee

Registered User
Jul 27, 2018
34
I haven’t posted for a while. My husband has been in the Care Home for a year now. The dementia is getting worse. Of course I know it can’t get better but I am beginning to feel that I can’t bear to see him anymore.
His mobility has reduced to the point where he has to be assisted from bed to chair and chair to wheelchair.
He is now double incontinent. He gets very angry with me when I visit and demands to ‘go home’.
He talks nonsense most of the time and asks about people who are long dead.
After 3 and half years I am wondering how much more I can take. I know many people can’t afford to put their loved ones into care and that makes me feel more guilty. That’s why I visit almost every day.
I have seen a counsellor but I have friends that I can talk to that don’t charge £50 a time! What I really need is someone to tell me what to do because I’m struggling to get through each day and to sleep at night.
Any words of advice or understanding will be welcome.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,710
Kent
Hello @TriciaBee

You could cut down the frequency of your visits if they are so painful for you. There is no need to go almost every day especially if your husband doesn`t really benefit from your visits.

I visited my husband every other day and he was pleased to see me and there was interaction. Our son visited at the weekend.

I only visited my mother once a week. It was a duty visit just to keep an eye on her care.

You have the choice.
 

Olliebeak

Registered User
Sep 13, 2014
127
Buckinghamshire
How about taking a holiday? Either with a friend or book something for people on holiday on their own, to give you some space. You might find putting some distance between yourself and the increasingly distressing visits, helps you to get your head together and decide on a routine of less frequent visits that you can cope with.

My husband is still at home but I have found going away (he goes into a home for respite)! and meeting new people who just see me - not the wife of someone with dementia, helps me remember who I am and I can go back to my normal life feeling better about it all - for a while at least.

You mustn’t feel guilty. It’s not your fault he is ill or that his care needs are more than you could possibly manage by yourself and you mustn’t feel guilty for being in a position where you could afford to make choices.

Take care of you.
 

TriciaBee

Registered User
Jul 27, 2018
34
Just yesterday, the manager of the Care Home said to me ‘he is getting very aggressive now’. I wonder if they are considering some kind of sedation. I know he makes things very difficult for the carers who are responsible for showering and toiletting him. At times he is unshaven and quite unkempt looking. Also his room often smells of urine.
I believe he is under stimulated but I know that it’s hard to make him engage with anything.
TriciaBee
 

Ernest

Registered User
Jan 23, 2018
94
I'm in a very similar situation. My husband who has FTD has been in the CH for almost 18months now and still he demands to come home. He is very short tempered with me sometimes and I know that there is absolutely no way I could look after him at home. We would end up killing each other, not intentionally, but because I can't help myself from helping him and he gets so angry with me for trying. He refuses personal care. He often refuses to get out of bed especially if it's not my day to go there. I visit every other day. He just sits and watches TV. He refuses to join in anything but then again he never was a very sociable person so why do I think it should be any different! Half the trouble I think with me, is that I keep thinking how I would feel in his situation. The thing that helps my guilt at putting him there, is that the carers find him ok. He gets on well with most of them and he is pleasant to them, most of the time. He always was very stubborn and dementia has just exacerbated that. One of the carers told me that dementia will do that to any traits. After all that, as I've said on this forum before, we've established a routine. Unfair possibly, but I try to make him think he's still doing the same things as he did before the CH. I take him to the pub we used to go to occasionally. He doesn't Denver we've been but for the time were there he enjoys it. I try to get post sent to him there. I don't argue but go along with him as far as possible. I still feel incredibly guilty especially when reading how other people are coping at home on their own. However, when I'm awake at 3am going over and over it, I just think of the pros and cons of bringing him back here and the answer always is, sorry no can do !! I love him so much and am desperately sorry that he's in this situation but it's the best I can do. Stay with it TriciaBee.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
I haven’t posted for a while. My husband has been in the Care Home for a year now. The dementia is getting worse. Of course I know it can’t get better but I am beginning to feel that I can’t bear to see him anymore.
His mobility has reduced to the point where he has to be assisted from bed to chair and chair to wheelchair.
He is now double incontinent. He gets very angry with me when I visit and demands to ‘go home’.
He talks nonsense most of the time and asks about people who are long dead.
After 3 and half years I am wondering how much more I can take. I know many people can’t afford to put their loved ones into care and that makes me feel more guilty. That’s why I visit almost every day.
I have seen a counsellor but I have friends that I can talk to that don’t charge £50 a time! What I really need is someone to tell me what to do because I’m struggling to get through each day and to sleep at night.
Any words of advice or understanding will be welcome.
Ok lovely, I ended up going less to seeDad , not the same as you I know but I found by going every other day & then down to 3times a week helped. I got OH & daughter to go visit with me & kept the less positive visits shorter. Going when activities were on took the pressure off me I found when on my own. I even took the tall thin dog in with me just to be a diversion!

You need to do something for yourself, to begin living again a more “normal “ routine.
A case of do as I say & not as I do, I’m afraid......but I’m going to start putting my own advice into practice starting next week!

fingers crossed
Xxx
 

Stayingalive

Registered User
Nov 24, 2019
23
I haven’t posted for a while. My husband has been in the Care Home for a year now. The dementia is getting worse. Of course I know it can’t get better but I am beginning to feel that I can’t bear to see him anymore.
His mobility has reduced to the point where he has to be assisted from bed to chair and chair to wheelchair.
He is now double incontinent. He gets very angry with me when I visit and demands to ‘go home’.
He talks nonsense most of the time and asks about people who are long dead.
After 3 and half years I am wondering how much more I can take. I know many people can’t afford to put their loved ones into care and that makes me feel more guilty. That’s why I visit almost every day.
I have seen a counsellor but I have friends that I can talk to that don’t charge £50 a time! What I really need is someone to tell me what to do because I’m struggling to get through each day and to sleep at night.
Any words of advice or understanding will be welcome.
Some people won't agree with me, and my husband with moderate Alz which is becoming severe rapidly, is still at home. My only experience of care home visits is with my mother-in-law who's a living skeleton with no cognition whatsoever who's lived in a care home for 10 years.
I would say I don't see why the fact that you can afford a care home for your husband makes you feel that you have to visit almost every day. I think you should break the cycle - take a week away somewhere, anywhere, and when you get back drop your visits to once a week, then to once a fortnight, then once a month. What's the point of visiting? It makes you feel ill and it makes your husband feel angry. I go to see my MIL once a month, it's a long way (2.5 hour drive) and seems pointless when she doesn't know who I am, but I go to make sure that she's OK.
Your caring responsibilities have been passed over, and you need to back away and start living your own life. If your husband was the loving man you lived with for many years, he would want the same for you too. If you were the person in the care home you'd want your husband to have a happy life.He probably hates you seeing him in the reduced state that he's in. Make some new friends, start some activities, have things to do every day that replace your depressing visit to the home. One day you'll realise that you're too busy to go and that's a good thing.
 

Suzy C

Registered User
Sep 16, 2019
39
Dear TriciaBee
I cannot believe after 3 and a half years you are still going every day. You have to get your life back. Start to reduce your visits by going every other day to begin with and perhaps also shorten them. You cannot continue like this. My husband of 44 years went into a care home in July and i visit every other day. I too think he has got worse and more aggressive and still wants to come home. You have to remember their reality is not your reality and they don't think in the same way you do. I also hate visiting and always come away depressed. I take my husband out to lunch or a drive which is not easy as he is in a wheelchair but we do what we can. I have come to realise he will always want to be with me even though at home he didn't know me at times. The guilt is just something we have to manage, it will never go. Please, please, start to look after yourself and begin a life away from visiting.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,106
Nottinghamshire
@TriciaBee

I know that feeling of dreading visiting especially when you’re expecting an angry reception. Your OH is safe so you don’t need to visit everyday.
I have to admit I did with my dad when he first went into his carehome but once I felt I trusted the staff I cut the visits down to 2-3 times a week.

I always felt guilty if I didn’t visit but I actually think it did my dad good for me not to be there so often. He started to join in with the activities even though he could do very little at that stage.

I had days when I felt I couldn’t see dad so I didn’t.

Why don’t you allow yourself a “holiday” Don’t visit for a week. youll probably feel better for it.
 

TriciaBee

Registered User
Jul 27, 2018
34
@TriciaBee

I know that feeling of dreading visiting especially when you’re expecting an angry reception. Your OH is safe so you don’t need to visit everyday.
I have to admit I did with my dad when he first went into his carehome but once I felt I trusted the staff I cut the visits down to 2-3 times a week.

I always felt guilty if I didn’t visit but I actually think it did my dad good for me not to be there so often. He started to join in with the activities even though he could do very little at that stage.

I had days when I felt I couldn’t see dad so I didn’t.

Why don’t you allow yourself a “holiday” Don’t visit for a week. youll probably feel better for it.
Thank you Bunpoots. I am trying to cut back on the visits but on days that I don’t go I just potter around at home doing nothing! I am planning a short visit to my son and his family in Rutland in March which I am looking forward to-with trepidation!
 

TriciaBee

Registered User
Jul 27, 2018
34
I'm in a very similar situation. My husband who has FTD has been in the CH for almost 18months now and still he demands to come home. He is very short tempered with me sometimes and I know that there is absolutely no way I could look after him at home. We would end up killing each other, not intentionally, but because I can't help myself from helping him and he gets so angry with me for trying. He refuses personal care. He often refuses to get out of bed especially if it's not my day to go there. I visit every other day. He just sits and watches TV. He refuses to join in anything but then again he never was a very sociable person so why do I think it should be any different! Half the trouble I think with me, is that I keep thinking how I would feel in his situation. The thing that helps my guilt at putting him there, is that the carers find him ok. He gets on well with most of them and he is pleasant to them, most of the time. He always was very stubborn and dementia has just exacerbated that. One of the carers told me that dementia will do that to any traits. After all that, as I've said on this forum before, we've established a routine. Unfair possibly, but I try to make him think he's still doing the same things as he did before the CH. I take him to the pub we used to go to occasionally. He doesn't Denver we've been but for the time were there he enjoys it. I try to get post sent to him there. I don't argue but go along with him as far as possible. I still feel incredibly guilty especially when reading how other people are coping at home on their own. However, when I'm awake at 3am going over and over it, I just think of the pros and cons of bringing him back here and the answer always is, sorry no can do !! I love him so much and am desperately sorry that he's in this situation but it's the best I can do. Stay with it TriciaBee.
 

TriciaBee

Registered User
Jul 27, 2018
34
What you say Ernest, describes my husband almost exactly.
Unfortunately, because he is disabled because of a stroke I am finding it difficult getting him in and out of the car and pushing him in his wheelchair is affecting my back. I have tried taking him to the pub or a cafe but he is morose and ignores me.
 

TriciaBee

Registered User
Jul 27, 2018
34
Dear TriciaBee
I cannot believe after 3 and a half years you are still going every day. You have to get your life back. Start to reduce your visits by going every other day to begin with and perhaps also shorten them. You cannot continue like this. My husband of 44 years went into a care home in July and i visit every other day. I too think he has got worse and more aggressive and still wants to come home. You have to remember their reality is not your reality and they don't think in the same way you do. I also hate visiting and always come away depressed. I take my husband out to lunch or a drive which is not easy as he is in a wheelchair but we do what we can. I have come to realise he will always want to be with me even though at home he didn't know me at times. The guilt is just something we have to manage, it will never go. Please, please, start to look after yourself and begin a life away from visiting.
 

TriciaBee

Registered User
Jul 27, 2018
34
Thank you all for your replies and your advice. I guess we are all suffering in much the same way and coping the best way we can.
 

Nandi

Registered User
Mar 20, 2018
28
Grimsby
I have been going to see husband every day this year at care home be because of guilt my fault he is in there as I got sick 9 days in hospital with pneumonia that's when he went in care. I now have shingles my immune system is so low care home tells me he is fine as I am not allowed there at moment he has had shingles vaccine I haven't. . Not his fault I know and resentful it is the carer that suffers most we have had all had these feelings have you read selfish pigs guide to being a carer get it Navigo are recommending ..still do feel guilty