I’m a carer for someone with dementia and I am not coping

KOM · ‎18-03-2019

Hi All,
I’m a carer for my 94yr old mother who has dementia. Her mood range from happy to angry and depressed on most days so I never know what I will be dealing with. Most days I can cope. I work full time and have organised for carers and social support to pop in and see mum for ½ hour a day just to help break up the routine and give me a break from being mum sole focus. The rest of my family lives a long way away and will come to help out, but like all of us they have to arrange it around when they can get leave off work and other life dramas.
My problem is I has been sinking into depression again, I can recognise the signs as it feels a lot different to just tiredness. It is a black hole sucking me in, if I didn’t have to cook meals and do chores I could easily stay in bed 24/7 and still be massively tired. I’m congratulating myself on just getting dressed and my hair brushes for the day.
I’ve upped my antidepressants for the last few days as I can’t get into see a Dr for a couple of weeks. I’m really scared of sinking further but am not a suicide risk – too may depend on me to be functional. I’m in a country area so they are no drop in mental health services or support.
Not thinking clearly, but am wondering if anyone can share a checklist or resources on how to navigate out of this.
I try to make sure we are eating healthy, use aromatherapy and music to try to life the mood. Can’t exercise as my body feels like a dead weight at the moment. Mum will refuse any respite care.

Quercus · ‎18-03-2019

Hello KOM and thank you for reaching out here for support.

Your post hit me in the heart. You sound utterly exhausted and stuck and after seeing my Mum act as carer for her parents (and working full time) for ten years and helping where I could I know how impossible your situation can feel.

I wish I had been able to afford to organise regular help for Mum whether she wanted it or not.

We tend to just keep powering on out of a sense of duty and responsibility and above all love and respect. Dementia cannot take away who this loved one once was for YOU.

But it is vital to make time for your own care too. Like you my Grandparents refused aged care. The effect on my Mum was enormous. She never complained but damage and resentment builds anyway. She burnt out when the passed away and was very unwell.

Anyway my point is I understand how easy it is to say just ask for help and how hard it is to actually get help.

My first step would be checking the carers website to see if there are any options you have not tried or considered already.

www.carergateway.gov.au/caring-for-me

There is also the carers helpline where you can ask for steps to take from people who know the system.

Free call 1800 422 737
Monday to Friday. 8am to 6pm.

You mentioned siblings who don't live nearby. Another situation that is familiar. Have you thought of calling a family dinner and asking for every sibling to commit to specific tasks? It is not fair on you to never have a rest. Didn't work in our family but hopefully yours respond better.

You sound like you're doing so many good things to try care for yourself but healthy eating etc can only do so much against exhaustion.

I think people don't understand caring for someone with dementia is emotionally draining as well as physically. It is a full time job in itself and always there is the grief of seeing your loved one change and the neverending guilt for wanting to have even one day alone.

Lastly, it sounds cruel but at some point you may have to ask for respite care anyway. You are important too.

Please feel free to write whenever you need. I am happy to listen.

Nat

Nurse_Jenn · ‎18-03-2019

Hi KOM,

Its great to see you reaching out on the beyondblue forum. There is great support here and many people who are in a similar situation as yourself. Caring for a loved one is rewarding but is not without its challenges. I have seen carer burnout or compassion fatigue in both colleagues and friends. It is really great that you are reaching out to get some support for your own needs.

I realise that living in a country town can be tough to get support so will offer you a few suggestions on getting through the next few weeks before seeing your GP.

There is a free program that operates in some parts of Australia called NewAccess. It’s a program developed by beyondblue. It is worth looking to see if it operates in your area. Some of the NewAccess programs can be done over the phone and mostly focus on people who are experiencing depression and/or anxiety. You don’t require a GP referral. The link is below for you to have a look at.

https://www.beyondblue.org.au/get-support/newaccess

Another option to use before you go to your GP is to use the beyondblue support line and speak to someone on the phone to get support through this really difficult time. You can ring the free support service anytime on 1300 22 4636. This can be really helpful to get you through the next few weeks.

Finally, I would suggest you ring your GP and ask for an earlier appointment based on the information you have provided. You mentioned you have increased your medication however I advise that you do this under the supervision of your prescribing Doctor. This way they can assure you are physically well and able to take a higher level of medication. I realise it is difficult but perhaps you could explain to the receptionists that you need an earlier appointment or ask for a call back from your GP. Getting into to your GP sooner would be the safest way forward in getting the right treatment quickly.

You might also ask one of your family members who live to come and support you for a some days to get a break. Do any of them know about your depression or is there any of them that you trust to talk with them about how it is impacting you?

Working both full time and looking after your mum is a big load for anyone but when you are under the cloud of depression, it can feel even heavier.

Be kind to yourself and use as much support as you can to get you through this difficult period. And keep posting around the forum - you are not alone.

Wishing you the best possible outcome,

Nurse Jenn

KOM · ‎19-03-2019

HI Quercus and Nurse Jenn,

Quercus I think you touch on something that may have triggered my depression - Grief. Mum’s behaviour the last couple of weeks has been distressing for me. She seems to conflate dreams with real-life events and paranoia. For example, she was convinced a family friend had broken into her room stolen and melted down her wedding rings. Even though, every day for the last 2 weeks, I would walk her to her room find the last place she hid them and show her that they were safely intact and OK. Then get her to find a new safe place to hide them for safe keeping. Guess I’m also worried she will recite the story to many others and I’ll have to do damage control – explaining to everyone the situation and the hurt feelings of the accused person that would come of it. The exhausting emotional work that comes with all of it.

My sister will argue with her about her “story” and the real facts. It makes no difference and I feel arguing about it will just embed the story more and prolong everything and make it worse. I’ve asked my sister to stop arguing and change the topic and distract Mum with nicer subjects. But she doesn’t always do that. My sister has her own problems in that area. My mum has also ramped up hoarding of food, which I don’t care about if it makes her feel OK. It is usually packaged stuff which doesn’t go off readily. She is also continually sorting boxes looking for things she has “lost” – usually she has sorted the item into another box and forgotten. But her mind always goes to someone has stolen the item. I managed to get her into the Dr to check if there weren’t any UTIs or other medical problems – all OK. The thing with Mum though, as a Dr described to me is she “presents surprisingly well” it is not until they do the cognitive assessments that they realise this very bright lady in her 90s has significant cognitive challenges. These types of episodes are not unusual but if I’m under the weather it feels overwhelming and exhausting.

If can’t get out of bed, except to feed us on the weekends my mother will get increasing frustrated with me and rail at me for ignoring her or wasting my life. She is old school like that and mental illness doesn’t exist – people just need to stop being stupid & snap out of it. Not something i can talk to her about

Nurse Jenn thank you for your suggestions, my Dr is away all next week so changing my appointment is not possible. I just have to self-manage. I will try that New Access coach.

KOM · ‎19-03-2019

I also feel massively guilty about being vague & unproductive at work.
I feel I should quit but we need the money to keep a roof over our heads.
I need to talk to my employer who I feel will be understanding as they know I’m a carer for my mum but I’m not sure how to approach it.

Simey22 · ‎19-03-2019

Thank you for reaching out and placing your issues on the board at Beyond Blue, that's a major positive move to be pro active in over coming your issues. I fully under stand and acknowledge you personal issues with depression and anxiety regarding your Mothers Dementia.

I myself watched my wife at at the time suffer and deteriorate to a point where she had to be place in full time care. I worked shift work as it was the only income. I experienced the mood swings and the psychotic episodes.

We had moments where she felt some one was trying to get inside via the roof, some one was knocking at the door and that people were watching her through the floor boards. She would contact me at work & expect me to RTN home as she felt scared or worried.

Dementia is like the waves at the sea, they revert back to their normal self and things seem to be fine then they get hit with a wave of fog and they loose mental cognitive ability. They forget stuff, they make up stuff and they become angry because they some how realise that thats what they are doing to fill in the blanks.

My best advice is to work with your sister and have time outs, both of you should attempt to have some form of community out let, like church or equivalent where you can both meet & become involved with people in a safe environment, they also may have people you can ask for help or mental health and counselling.

I would also suggest attempting reducing hours to part-time work for a short period, you should be able to have a meeting with work and explain what's going on, you should be able to get a carers allowance if you have not already done so, you may also look into respite care at a hospital for 3-4 hrs a day where you mum can go and hang out with others.

KOM · ‎19-03-2019

Thanks Simey22,
Behaviour coming in waves is a good description. Surprisingly Mum has been happy and positive the last 2 days which is a great relief. But yes when she is going through a negative stage you don’t know if it going to be a permanent phase and this means big changes from now on. The timing also seems to match up with stressful periods at work even though a trying to mask it when I’m at home so it doesn’t rub off on Mum ( I’m clearly failing there)
Think my way of dealing with stressful events is working through logically & calmly until the emergency is over and then quietly going off to have my own breakdown once everyone else is safe & happy. So while Mum and the rest of the family are over the latest episode I’ve only just started processing it.
I’m new to this country town so don’t have any friends here. My dogs are the bright spot in my day and my mental health support (and Mums).
I think I will discuss going part time with my supervisor and see what they think.

Juliet_84 · ‎27-03-2019

Hi KOM,

Have you considered putting your mum into full-time care, that way you could visit her of an afternoon and see her as much as you like but you are not responsible for her sole care, meals etc? I don’t know much about this stuff so apologies if it’s really expensive or not feasible for any reason. I also know there can be cultural issues with this as some cultures believe that parents are their responsibility, but it just seems a lot with working full time etc at the same time. I’m sorry that you don’t have much support from your family, which makes things hard. I hope that you can find a solution that gives you some peace.

Quercus · ‎29-03-2019

Hi KOM,

How did you go speaking to your workplace about part-time hours?

You wrote about your Mum thinking her rings were stolen and this sounds familiar. My Grandma would get an idea stuck in her head and we could not argue without her getting angry. It was hard to watch because it was nothing like her to be so aggressive.

She told me once early on, on a very good day that she was embarrassed and afraid of losing control. I understood that and held onto that. When I am embarrassed or scared or feel helpless I know I lash out too.

Could you approach the family member and explain what is happening? It might be easier and less stressful for you if they know first and are aware it is the dementia causing this paranoia. There is nothing worse than finding out last and knowing everyone has been discussing this behind your back.

How are you holding up?

KOM · ‎01-04-2019

Thanks for asking Quercus,

I’m finally getting in to see a Dr today and have started on a six-session phone counseling course so I’ll see how it goes.

Still feeling very overwhelmed and very exhausted. Crying at the drop of a hat, which is not like me.

Work has been supportive but I haven’t got the mental bandwidth to work out a better way of dealing with full-time work and caring for mum. I have to sit down and work out budgets and if I can take a pay cut by going part-time, still cover all our bills, and have enough for my old age

I was telling my family about mum’s stories, most of the time the stories are harmless and I just go along with it as I don’t see any point to trying to fact check her all the time. But occasionally she will find a topic that cuts deep emotionally and it is painful to ignore. And when she repeats it enough, is a bit like emotional torture.

With the stealing story, the person it was about has a bit of a grasp on what dementia, is but doesn’t really get what it is like in practice if you know what I mean. They would be very insulted and it would be a drama I just can’t deal with at the moment. So for that reason, I've kept to myself.

I did meet someone else who is looking after a parent with dementia and they said they too were putting out emotional spot fires all the time with what their parent says, so at least I’m not the only one 😉

I need to find a discussion forum or somewhere that I can talk to other people how to juggle being a fulltime a carer are and trying to keep a full-time job.