I feel so helpless

[Geof]

Hello,
This is the first time that I have used Talking Point but I feel so confused, guilty and helpless.

My wife and I are both 68 and I am her sole carer. We have no family or close friends and have just lived for each other and our Labrador dogs in the 38 years that we have been married.

My wife's mother died in a mental hospital with dementia about 25 years ago and 16 years ago my own mother moved in with us after developing Alzheimer's and we cared for her for 8 years before moving her to a care home when we could no longer cope.

My wife began to struggle with the complexities of life about six years ago but, suspecting what might be wrong, refused to see her doctor, fearing that she might end in an institution like her mother.

Finally last year she agreed to seek help and was diagnosed with Alzheimer's.
She refused any medication but was able to function at a fairly high level, walking the dog alone and shopping unaided at the corner shop. Most other household tasks I looked after.

Suddenly, overnight, three weeks ago my wife started to have psychotic episodes of danger and persecution. She was admitted to hospital for medical tests which ruled out any physical cause, discharged and passed over to our local NHS Mental Health care team. She was visited at home on a daily basis by the Rapid Intervention Team and started on anti psychotics with no effect. During this time I had to let our Labrador go into foster care because he became over protective of her and she of him during the visits and would not let him out of her sight in case he came to harm.

Last Thursday evening the Mental Health Team decided that my wife needed to be admitted into a local dementia care home for respite care as they considered that I could no longer safely look after her, having had no sleep for a number of days.

So now I am alone at home feeling so helpless. I know that she is being well looked after and that the medication can be increased safely under constant supervision, but I am terrified that I may not be emotionally equipped to care for her at home in the future and this makes me feel so guilty. I promised to always take care of her and it breaks my heart when she asks about coming home.

Sorry that this is such a long message but my mind just keeps going round in circles about what the future holds.

 

[marionq]

Your post is a sad one Geof as like so many others you are in over your head. Promising to care for a loved one falls apart when dementia overwhelms them. While she is safe in care make your commitment to visit and ensure that the care she gets is what she needs.

You might find that she settles better if you don't visit too often at first or stay too long. Others will advise you. Good wishes.

 

[canary]

Im so sorry Geof. Dealing with dementia is like trying to hold back the tide

I would like to point out that you will still be caring for her - but in a different way.
The personal care and time consuming things will be done by the care staff, but she will still need you as an advocate - you will need to interpret her ways, advise staff on what she might like, take her to appointments and perhaps days out if she is well enough, keep an eye on her possessions and buy new clothes, bring in little things that might help her and generally keep an eye on her. If you want to do things like helping her with meals or showering then you can.

Never, never feel that you are abandoning her - you arnt, you have done your very best for her and no-one can do more.

 

[Scarlett123]

Hi Geof, and welcome to Talking Point though I am sorry about the circumstances that have brought you here. It is such an awful situation to be in, and I understand completely, having looked after my late husband for many years, until I just couldn't cope any longer.

I can't recall having read a single post on here, from a carer who had to reluctantly agree to their loved one going into residential care, me included, who didn't feel guilty, especially when their spouse, or partner, asked when they could come home.

Here on TP, you will find a lovely group of cyber friends, who understand just what you are going through, and who can sympathise and empathise with you. Alas, when we all promised to be there for our loved ones, and care for them for ever, Alzheimer's, and its terrible implications, didn't figure in our thoughts.

You have been wonderful to care for both your mother, and mother in law, and also your wife, and have absolutely nothing to feel guilty about. Regarding what the future may hold, nobody knows, but I would always urge couples to make as many lovely memories as they can, whist they are able to.

If your wife is able to, perhaps you could show her photo albums of happy times you have had together, and talk about these? I'm sure others will be along soon with suggestions, but please keep posting and ask any questions that you want to.

 

[Casbow]

Every time I read about a carer having to admit that they cannot cope anymore, it makes me cry. I dread the day when I might have to give up coping with my husband. I am very lucky as I get a nights sleep without interruption, usually, so I guess that's how I keep going. We have been married 51 years next week but got married young so I cannot imagine life without him.I wish you well. I am sure in the end it will be as ok as it can be.xx

 

[Scarlett123]

Every time I read about a carer having to admit that they cannot cope anymore, it makes me cry. I dread the day when I might have to give up coping with my husband. I am very lucky as I get a nights sleep without interruption, usually, so I guess that's how I keep going. We have been married 51 years next week but got married young so I cannot imagine life without him.I wish you well. I am sure in the end it will be as ok as it can be.xx

A Happy Anniversary for next week, Casbow. From my own experience, I coped reasonably well, until I was deprived of sleep, night, after night, after night. John could drop off immediately afterwards, whereas I couldn't, and then, eventually, when I did, John would wake me again.

Sleep deprivation is dreadful.

 

[pamann]

Hello Geof, welcome to Talking Point, l was in the same situation as you 9 months ago, l feel for you so much, it is so hard to care for our OH when we get no sleep, l was kept Wake for 3 months, hubby would not go to bed. I had Rapid response nurses, he went into a care home for respite, l was advised to keep him there as he was not easy to manage, he is so much better now he has settled. See how you feel when your wife goes for respite, you may feel you can cope again. It was the hardest discision that l had to make, after 55yrs together it was heartbreaking. TP is my lifeline, l would not have managed without all the help and advice l have received from from this forum. Keep posting Geof

 

[Geof]

Thank you all for your welcome and supportive messages.

I feel a little calmer today and have been able to have a long talk with my wife's mental health outreach worker.

The bottom line is that they will not consider letting her return home, for her own safety, until such a time as the psychotic events have ceased. The medication can only be increased slowly and it will probably be many weeks or even months before any long term decisions can be made. If the drugs don't work she will have to remain in care permanently. I've also been advised, as some of you have said on here, to reduce the length of visits and not to visit as often. This seems to me to be a bit cruel but I'm told it's for my own good so will heed the advice.

Under the circumstances, I have made arrangements to bring our Labrador, Skye, home from foster care tomorrow. He will be company for me and get me back into some sort of routine again.

Thanks again for your support. I will keep in touch.

Regards, Geof

 

[pamann]

Hello Geof, l visit my husband everyday for 5 to 6 hours, l need to be with him, and he needs me nobody has told me not to visit for too long or not so often, my husband thinks that l live in the home, when l leave him l tell him l am going to work, l will be back later, he accepts that, l am with him most evenings, l say to him l am tired so l am going to bed, the carer's and manager tell me l am a very loyal wife, most visitors don't go often enough, and when they do only stay for less than an hour. So Geof do what ever you feel is right for you. Thinking of you

 

[Casbow]

Thank you scarlett. 51 years on Sunday. the last nine with dementia. We have had a great life until then. Then a not too bad time. Now its one day at a time.!! I love him, and like you all, have to watch his deterioration on an almost daily basis. Love to you all.x

 

[aprilbday]

One day at a time. That's it. One day. At a time.

 

[Debs42]

Geof, be positive about the medication. My husband had to go on to anti-psychotic drugs and they took some time to have an effect, but as the dose increased they started to work, and now about 9 months on we have reduced the dose significantly with no adverse affects - he does not remember any of the things he imagined last summer, so he is much happier and easier to deal with.

 

[1mindy]

Geof I truly hope the drugs work. My husband is now in a care home ,twice I refused to let them section him,and honestly it was because I wasn't ready to let him go. My guilt now is because I didn't let him go sooner as he is so settled there. There is no right or wrong ,only you can make the decision about what is right or wrong. Great that you are getting the dog back. I borrow my sons dog as she makes me get out and about and is a great listener. All the best to you with whatever the future holds.

 

[Geof]

Its getting worse. The meds are being increased by 50% every four days but still no effect. This afternoon she was begging for me to take her home and sobbing when I said I couldn't. She believes that if I take her home she will be safe with me but I know that she can't escape the voices in her head. Her whole reality is one of fear from the threats being made by the voices that she hears.
The mental health team say I should rest and occupy myself with other things but how can I when my wife is my whole world and I cannot help her. How long can this go on for.

 

[pamann]

Hello Geof, sorry you are going through this traumatic time with your wife, they will get the medication right it does take time, l have been through 10months of changing meds with my hubby, he is now on high dose of meds, he still has bad days and good ones, he used to cry everyday for me to take him home, it is so hard for us to be strong enough to cope with this.
I know what you are going through, many a time l felt like taking him home, then l new l would be back to square one, something told me don't be silly you can not cope. I hope your wife will soon be calmer then you will feel better, it just takes time, my thoughts are with you Geof.