Hi Lell,Not a reply, a question. I can't go to work as am full time carer for my dad. No one to talk with, especially no one who understands that losing your identity is an aspect of dementia that no-one warns you about! Dementia this and dementia that...no warning of the impact on the carer (and possibly family of).As a result of isolation, life can become monotonous with the potential for depression increasing, with depression comes the amotivation to do something about the situation. My question is, is anyone else in this situation? Leaflets saying look after yourself. Lists of support groups that a few and far between, and who wants to meet strangers when feeling low? Most are in the mornings; as are the activities for the individuals with dementia. Sounds brilliant! Hey ho! My dad is no longer an early riser (he point is that there is nothing to get up for!), and it takes me 3 hours to get him ready to go out (from waking him up to being ready to go out). So, we miss the majority of activities as a result of the timing of them. I can't get out as I have to get my dad up, or I need to ensure that he is getting sufficient drinks/food as he will forget as soon as I leave the house. Any, non patronising, suggestions anyone?
This question really sums up much of the difficulty of being a full-time, informal, unpaid care of a person with dementia.
Lots of issues here:
1. Social isolation. No longer working (financial constraints too?) so little contact with outside world. How to stay mentally healthy when all you do all day is care?
2. Loss of the personality of the person you know and care for, which is both upsetting (it's a slow form of bereavement in many ways) and also frustrating as you want to have that normal interaction but it's just not happening.
3. Lack of variety in daily life – predictable and monotonous indeed. Sounds like few opportunities to do enjoyable, stimulating or rewarding things – either on own or with father (who I'm sure would like to do stimulating things too - you mentioned that your father had nothing to get up for)
4. Increasing risk of depression - both for you and potentially also for your father too.
5. Decreasing motivation to care for yourself (hopelessness) - a potential symptom of depression.
6. Lack of cover. No family or friends who could help - even just for a few hours?
So that's a lot to cover, and unfortunately I can't address all of these issues in a quick Q&A session and also without knowing more about your circumstances (location, type and stage of dementia, family and financial situation, etc.). But I will try to point out some potentially useful resources for you without the 'patronising stuff' (by which I assume you mean sympathising but not actually being very helpful, or just pointing out the obvious!).
1. Online support: you mention your inability right now to get out. So get online (like you are doing right now) and interact with other people who understand what you're going through. This will potentially help you to feel more socially engaged with the world, and you could also help others by sharing your experiences. You've already found TP, which is great, but there are other online forums too, like ones for carers in general:
https://www.carersuk.org/news-and-campaigns/ending-isolation-among-carers/be-a-member-end-isolation - Sorry Harriet for promoting the competition!) ;-)
2. Respite care – even for a few hours or days. Apply for this through local social services with the help of your dementia support worker (or other charities) if needed. It can be a real lifeline to reconnect with the world and give you a break every now and then.
3. Bring social activities to you: if you have family and friends who could break the monotony, invite them over! If they're not very knowledgeable or experienced with dementia, be patient, prepare them in advance, and then help them adjust for the first few times they come over. Some people may not enjoy the experience and will drop out, but others may enjoy it and potentially bring a lot of joy and stimulation to your father. Encourage them to bring over pets or young childen if possible, as they are often much easier and less socially demanding than adults. Just a thought anyway.
4. Try to do fun things with your father
It sounds like you're both really fed up and in need of doing enjoyable and rewarding things, but the local support groups are difficult to get to. This is a frequent problem, unfortunately. You could trying contacting the organiser and asking whether there is any flexibility in the schedule (early morning groups for dementia doesn't sound ideal, to be honest!). Alternatively, see previous suggestion about bringing people to you or else going out by yourselves. If right now you do very little that could be described as 'pleasant' then don't suddenly go from that to a visit to Alton Towers. Start incrementally by trying just to go out for walks, seeing the world and getting some fresh air (especially now the weather is getting nicer). See how this goes and then build confidence from there. But try not to do too much too quickly.
There is so much to talk about here, but unfortunately I must get to other questions. Please do ring the helpline to discuss these issues further though.
Best of luck.