Carer breakdown

[Alicenutter]

Good morning

This is a weird post to write. I would like to ask those who have suffered from, or witnessed, carer breakdown, how you know when you've got it? I think I'm close to the edge - frequent tears, getting angry with my husband, not wanting to get up in the morning, not feeling up to doing anything much, getting tired of only talking about my husband's dementia whenever I get to talk to anyone other than him.

To summarise the situation at home right now: my husband, who has been diagnosed with FTD, can be very angry, and is frequently abusive verbally (every day) and occasionally physically. He is fit, and has no ostensible idea that he has anything wrong with him. I am trying to get a regular caregiver in place, but for the past month or so since we have been living permanently in the USA, have relied on friends & family, all of whom have jobs and busy lives, to keep him company once or twice a week. Otherwise, I just go out - to Caregivers' support groups & workshops, mainly, and leave him on his own. He is physically safe, and sometimes quite enjoys time alone, but he hates seeing me leave.

The most difficult symptom for me (and probably him) to cope with is the Capgras stuff, where he thinks I am not his wife, but a look-alike impostor. This has most recently resulted in him taking my car keys and throwing me out of the house on a rainy Friday evening…Friends rescued me, and I spent the night at their house, but that meant leaving him alone all night. He was okay, if shaken in the morning, but that is not an option.

Respite, that's what I want. I have a feeling that would set me up for a while longer, but the difficulty is - how? When? Where? I am taking advice on this, and all the other short-, medium- and long-term care options, but in the meantime - how do I get through today? And tomorrow?

 

[HillyBilly]

Hi Alice.
I'm sorry not to be able to offer any meaningful advice right now but wanted to reply and bump your post up.
Can only provide a virtual hug xxx

 

[esmeralda]

Hope you get good advice soon on respite Alice, do make sure you let people know how desperate you are and that you fear the situation will break down unless something happens to give you a rest soon.
In the meantime, I know it's hard, try to take thing moment by moment and trust that something will happen quickly.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[pamann]

Hello Alice, sounds like you have carer's breakdown, l had it 1yr ago, l could no longer look after my husband, l was completely worn out, you must get some help, see your Dr. I had the rapid response nurses, they referred me to the authorities, husband was in a CH within 10 days. You can not carry on much longer or you will be very ill. Get some help.

 

[Casbow]

I have to agree with Panam. You need help and you need it very soon.I am in a bad place at the moment but you sound even more in need of help. Get on to your doctor and say how desperate you are. They usually get Social services to respond more quickly. Good luck. xxx

 

[Aisling]

Good morning

This is a weird post to write. I would like to ask those who have suffered from, or witnessed, carer breakdown, how you know when you've got it? I think I'm close to the edge - frequent tears, getting angry with my husband, not wanting to get up in the morning, not feeling up to doing anything much, getting tired of only talking about my husband's dementia whenever I get to talk to anyone other than him.

To summarise the situation at home right now: my husband, who has been diagnosed with FTD, can be very angry, and is frequently abusive verbally (every day) and occasionally physically. He is fit, and has no ostensible idea that he has anything wrong with him. I am trying to get a regular caregiver in place, but for the past month or so since we have been living permanently in the USA, have relied on friends & family, all of whom have jobs and busy lives, to keep him company once or twice a week. Otherwise, I just go out - to Caregivers' support groups & workshops, mainly, and leave him on his own. He is physically safe, and sometimes quite enjoys time alone, but he hates seeing me leave.

The most difficult symptom for me (and probably him) to cope with is the Capgras stuff, where he thinks I am not his wife, but a look-alike impostor. This has most recently resulted in him taking my car keys and throwing me out of the house on a rainy Friday evening…Friends rescued me, and I spent the night at their house, but that meant leaving him alone all night. He was okay, if shaken in the morning, but that is not an option.

Respite, that's what I want. I have a feeling that would set me up for a while longer, but the difficulty is - how? When? Where? I am taking advice on this, and all the other short-, medium- and long-term care options, but in the meantime - how do I get through today? And tomorrow?

I am not much help. Sorry. So am bumping up your post. Unfortunately sometimes posts can slide down the list so bumping it up can encourage more responses that can offer advice.

Aisling xx

 

[HillyBilly]

Alice - how are you getting along with any form of respite for you and your OH? You need help and a break xxx

 

[Pollyanna153]

Good morning

This is a weird post to write. I would like to ask those who have suffered from, or witnessed, carer breakdown, how you know when you've got it? I think I'm close to the edge - frequent tears, getting angry with my husband, not wanting to get up in the morning, not feeling up to doing anything much, getting tired of only talking about my husband's dementia whenever I get to talk to anyone other than him.

To summarise the situation at home right now: my husband, who has been diagnosed with FTD, can be very angry, and is frequently abusive verbally (every day) and occasionally physically. He is fit, and has no ostensible idea that he has anything wrong with him. I am trying to get a regular caregiver in place, but for the past month or so since we have been living permanently in the USA, have relied on friends & family, all of whom have jobs and busy lives, to keep him company once or twice a week. Otherwise, I just go out - to Caregivers' support groups & workshops, mainly, and leave him on his own. He is physically safe, and sometimes quite enjoys time alone, but he hates seeing me leave.

The most difficult symptom for me (and probably him) to cope with is the Capgras stuff, where he thinks I am not his wife, but a look-alike impostor. This has most recently resulted in him taking my car keys and throwing me out of the house on a rainy Friday evening…Friends rescued me, and I spent the night at their house, but that meant leaving him alone all night. He was okay, if shaken in the morning, but that is not an option.

Respite, that's what I want. I have a feeling that would set me up for a while longer, but the difficulty is - how? When? Where? I am taking advice on this, and all the other short-, medium- and long-term care options, but in the meantime - how do I get through today? And tomorrow?

Sorry to hear this I have been in this situation six months ago I visited a friend and she seen the state I was in and she rang my doctors and said she was very worried about me
Doctors were brilliant nurse brilliant came into the doctor with me and basically decided it was Carer crisis
I was getting no help from social services despite many phone calls I kept getting fobbed off with them
We managed to get two weeks respite but I couldn't have my husband home and he is still in the home
He has FTD so I know where you coming from
I can't explain how traumatic is has been leaving him there but he getting worse
You go through so many emotions the main one I think is guilt
I have been told I can't do more than I did but it is very hard
BUT you have got to start thinking about yourself because I was at breaking point still have some tough times
My husband is safe in the home and that is probably the one thing that gets me through this
My husband has had dementia for at least six years but didn't realise it at the time

Please please try and get as much help as you can keep getting onto people for help
I really hope that you get help urgently as it no good if you are ill
Sending you many big hugs xxxx

 

[feeb]

Hi Alice

I am new to TP and so I dont feel qualified to offer any advice. I just wanted to say I am sorry about the miserable situation you find yourself in and I hope that you are able to fix up some respite care for your husband as soon as possible for the sake of your own health and ability to care for your husband.

xx

 

[Grannie G]

Hello Alice

My husband didn`t recognise me as his wife almost daily. It happened during sundowning periods when he wanted to go home to his real wife and his real family. He feared they would be worried about him.

It was the most distressing time and I do know what you mean about carer breakdown. I managed to get through this because our son lived a 5 minute walk away and was nearly always available. When my husband didn`t know me, he always knew our son.

I don`t know how I got through this but my husband was also losing his mobility and regular 999 calls to help him off the floor resulted in the advice and decision to accept residential care. It was not what I had wanted but necessary for both of us.

All I can say is once he was settled in residential care he came through this period and became as contented as could be, knowing me, even if he was unable to articulate who I was, and greeting me with a lovely smile and warmth at every visit.

 

[Spamar]

Hi Alice,
Unlike you, OH wasn't too bad to look after. We had the delusions and hallucinations, but they were zapped with medication. There came a point when I was asked how I was. Fine, thank you. That afternoon I was asked the same question by another person and - I completely lost it! I'm sure you can imagine! Fortunately the person was a friend working for our local county carers association. She talked to me for about 2 hours! Then started putting some stuff in order for me. I decided that an extra days day care was in order, also respite. Two of his children came up three (!) months later for a weekends respite for me - that taught them a lot. I also arranged two weeks respite in a carehome ( we were self funding). That also helped, but a few months later he had another 2 weeks respite. Then started to go downhill so fast. Back to respite, and he never left.
So basically, it was left up to me, though I did get help when needed.
I'm not sure if this helps, as you are in the States, and I'm not sure how things work there.
However, if you feel you're near the end of the line, you probably are. Time for respite!

 

[AlsoConfused]

Hi Alice

From a UK perspective, you obviously need respite care (at least 72 hours - a week would be better) for your husband because you've reached the end of your tether. You won't even be able to think about what might be best for both of you until you've had at least a short break.

Most of us don't know what types of help are theoretically available to you in the USA, nor how your personal circumstances (eg medical insurance?) impact on whether you'd receive particular support services. Do you know anyone or any organisation that could help you think through what options you have? I imagine there's a US equivalent of our Alzheimer's Society and Help the Aged, for example. The UK versions have Helplines; presumably US equivalents offer similar support?

 

[Amy in the US]

Alicenutter, I am sorry I didn't see this thread sooner. If you feel you need help, then you need help, and you need it ASAP.

We do have an American Alzheimer's Association and they have a toll-free number you can call 24/7, which is 1-800-272-3900. Do not hesitate to call them at any time.

Many areas also have local, county, regional, and/or state Alzheimer's Associations. Calling the toll-free number above will give you somebody who can put you in touch with them, or a Google for your city/township/county may turn them up.

The other resource I would point you towards is your local Area Agency on Aging/Senior Services office/Senior Council/Senior Services/whatever it's called in your area. Again, depending on where you live this could be at the city, township, county, or state level. I should think Massachusetts would have more regional agencies than just the state level. A Google of "area agency aging county name Massachusetts" should return some information.

They should have some sort of social worker or outreach person who can, at the very least, give you a list of nursing homes and facilities in your area that offer respite or short-term stays.

If you attend any support groups, as it seems you do, contacting the facilitator for those groups may also be a way to put you in touch with someone who can direct you to resources.

I am sorry you are having such a difficult time and hope you can get some support. Very best wishes to you.

 

[Alicenutter]

Thank you

Thank you all very much for your concern and your answers. When it comes down to it, with different nomenclatures and organisation, I think the system here in Massachusetts, offers most of the same options as in the UK. I have hired, at some expense, a Geriatric Care Manager called Jim (like a private social worker, sort of) who is tremendously helpful. The local Elder Care service was, frankly, useless; did not answer the phone, did not reply to voicemail or email; I gave up on them and was floundering on my own. It seems as though with Jim's help I will be able to get Joseph into the local Geriatric Psychiatric Unit, where I hope his medication can be adjusted. Part of the problem is that Joseph appears very 'high-functioning' as some people say, but in reality he's not. In social situations, he may seem a bit vague, but manages to hold it together, at some cost to himself subsequently, for the duration of a visit or a dinner. On his own with me, he is often confused, scared and explosively angry. Physically he’s fit, and apart from being more and more reluctant to take a shower and change his clothes, he looks after himself quite well. Jim the social worker gets this discrepancy between appearance to strangers and daily reality, and is concerned, as am I, for my physical and emotional safety. I am going to keep on keeping on, like a bird that flew (Dylan reference) until I get some respite, because that's what I need. It's not selfish, it's necessary.

 

[Amy in the US]

Alicenutter, so glad to see your response. Sorry to hear the local Elder Care agency were rubbish but you clearly have found a way into the system.

I wanted to directly address your comment about maybe having your husband admitted to GeriPsych (Geriatric Psychiatry unit, also called Senior Behavioral Health).

I want to tell you that I think this is a great idea, as I have been through this with my mother.

Sadly, I had to wait for a crisis to have my mother evaluated, and she was transferred to the SBU/Geri Psych unit at a local hospital directly from the ER of the hospital where she was evaluated for her accident. I hope you won't have to wait for a crisis, but should your husband have to go to the ER, remember it may be possible to get the admission to Geri Psych that way. I had a sympathetic and understanding ER physician and primary care physician make this happen for me. If your social worker/case manager can manage it, great.

My mother had excellent care and very thorough evaluations. They took care of medical issues and straightened out medication problems and told me she needed 24/7 care and did not discharge her until we found a suitable placement. The care was excellent and I could not have asked for better.

I know a lot of people are put off by the idea of Geri Psych but there was nothing alarming about it, quite the contrary, and I just wanted to go on record with that. No scary patients, nobody restrained, nobody over-medicated, no bare walls or bars on the windows. The doors were locked at the end of the ward, yes, but otherwise it was fine, actually nicer than most hospital wards. Lots of windows, a dining/activity room, a piano, an aviary, a fishtank, and some very skilled and dedicated staff.

They also had a social worker, dedicated to the unit, who helped me find a suitable nursing home/care home placement.

Like your husband, my mother was (less so now, but at the time) very able to "cover" her dementia, or present well. She is intelligent and well educated and very verbal. Several of the nurses commented to me that she "covered" or did hostess mode extremely convincingly, but not one of the medical professionals at either hospital, or at her care home, was ever taken in by this. Even her neurologist at her current care home, before he knew all the details of her history, could tell when she was confabulating or relating a delusion, even without me sitting behind her making faces! (That was my best strategy for doctor's appointments, to sit right next to her, but slightly behind, as she has poor peripheral vision, and then I can nod or shake my head, or smile or grimace, to indicate when she is reporting accurately or inaccurately.) So I know it's worrying that they won't believe you that he has dementia, but try not to worry too much.

Sending you good wishes, lots of support, and I hope you can move forward and get your husband the care he needs and YOU the respite and support you need.