Morning! This is just a hello and a wave to anyone who might be passing by. I haven't posted since January and I can't believe it is now May!! Nearly half the year has gone. Just a warning, I'm going to talk about my mum's dementia. I'm aware that many people have loved ones suffering from this, so I just wanted to give a heads up if hearing about it would be distressing.
What have I been up to? I cut my hours at work. It's just too much trying to support Dad and with mum being so unwell with dementia it's been so distressing to see her decline. I guess I am emotionally exhausted, so work on top of that was too much. I'm down to three days a week now, which is more doable.
One of the things I have thought about is how dementia is often portrayed on TV. Usually the person is forgetful, may be amusingly so, they might wander. What you don't see is those who have paranoias, delusions, hallucinations, aggression, and deep depression. Not all people with dementia exhibit these things, it all depends which bit of the brain is affected I suppose. But for us Mum has struggled with really really scary delusions, where she is terrified of these men going to attack her and she would not accept that she is safe and that she hasn't been attacked. In fact she was frustrated and angry because she perceived that no one would believe her. It was so upsetting to see. All the advice is to not contradict the person with dementia with their delusions because they can become distressed and disorientated - but instead you should try to comfort them and tell them you understand. But this didn't work for two reasons - she was angry that we were just, in her eyes, patting her on the head and saying 'there, there' instead of resolving her problem, and if we told her she was safe she became angry and frustrated that no one would believe her. The other advice we got was to distract her to something else, but that didn't work, she would immediately loop back to her delusion/paranoia.
Of course we checked and all the times she insisted she'd been attacked - i.e. by the doctor, the dentist, by men coming up from the cellar - she had not been alone and there is no cellar. She even accused the psychiatrist of coming in her room and attacking her - he'd never met her before.
She has absolutely no insight into her dementia and cannot understand why, for her safety and my dad's, she has had to go into a care home. She often goes on and on at us about why she is in the care home, how much she hates it. It is a lovely care home and the staff are beautiful people, but I totally understand, I would want to be in my own house. We worked hard to keep her at home for as long as possible, but then she started not sleeping at night, she often wandered from the house, switched ovens and other appliances on and forgets, can't dress herself, cook food, thinks she has already eaten food when she hasn't, she can't take her medication, is belligerent, delusional and sometimes aggressive. She would harangue my dad for literally hours on end until he felt he was going insane. She sometimes completely blacks out and falls down. We were broken.
We've worked with the psychiatrist and mental health team and she's got past the delusion that she's being attacked by men coming in her room, but she cycles weekly between being happy and sweet, to pacing endlessly until she can't walk any more and then back to depression, anxiety and confusion. It is the most difficult and awful disease. It's like you're losing your loved one but they are still around. The grief feels endless.
Mum was terribly down when I saw her on Friday, but she did allow me to pray for her. By Monday she was a lot more cheerful, confused because she thinks her mum is still alive but happy, so I thank God for that.
Mum has mixed dementia, vascular and Alzheimers. They still don't seem to know what causes 100% of dementia. Mum has had numerous mini-strokes, both brain bleeds and clots in her life. She struggled with horrendous migraines that were almost like strokes (confusion, numb arm, visual disturbances) and so we know where the vascular dementia has come from. Also, apparently you're more prone to dementia if you lead an unhealthy lifestyle, don't keep your brain active, are socially isolated and are prone to depression. It's so interesting to me that scripture teaches us to cultivate a cheerful spirit for our health - a positive outlook really does affect not only our mind but our health.
A joyful heart is good medicine, but a crushed spirit dries up the bones.
Proverbs 17:22
And my creaky joints kind of sum that up haha. Gotta look on the bright side more!! 😁
I remember growing up how much Mum suffered from depression and because of the cult church we belonged to up until 2012 she didn't socialise at all (we weren't supposed to have friends or even meet fellow church members outside of a church service - the teaching was if you want to invite one person you have to invite everyone 😒), other than attending the endless church services.
Mum also struggled with anxiety, where if someone looked at her the wrong way she would immediately presume they disliked her. She would concoct these imaginary stories - like, X doesn't like me she always looks at me with a smirk, I think that she didn't like that time I was telling her about my new dress, she thinks that I'm full of myself. A complete fabrication - like Mum was some kind of mind reader! Or, I haven't seen X out and about recently, I think that her husband is a bit controlling (even if she had no particular evidence to back this up).
She also always felt that she'd done something wrong, and had guilty feelings even if she really hadn't done anything wrong at all. Part of this was her childhood, she had an angry abusive stepfather, and partly due to the cult church - the church leader claimed God was telling him if people's thoughts were wrong during a service (etc) so weird to look back on, but it really did not help Mum's propensity for paranoia and anxiety. A negative mindset affects us so much...although obviously this isn't the only reason that people get Alzheimers, but it's just something I have pondered.
So I think Mum's dementia manifests in an extreme exacerbation of her natural mental state. Her anxiety, depression and delusions are like the negative side of her personality x1000.
I just wish that instead dementia had exacerbated all the beautiful aspects of her personality, her sense of humour, her kindness, her willingness to help me when I was struggling. She loved my girls with a passion. We used to have long conversations about God and scripture. She loved people watching - sitting in a railway station or shopping centre watching the world go by. We used to go on lovely walks together and chat about this and that. We would go away on holiday with them every year, and have so many happy memories. Poor Mum has lost so much. It's heartbreaking.
Dad is doing OK, but it breaks his heart. He said to me the other day that the reality that he will 'never get the girl I love' back had hit him. He's keeping active though. He's joined lots of groups - a carers group, a historical society, he's booked a holiday to some railway in Wales, he's been going to the theatre and to a rock cafe where they all sing old songs together and chat. We have him round our house every week for a meal and he and I go out for lunch together on one of my days off. We're planning a holiday with him too.
Sadly this has been financially devastating. Mum's savings, that she diligently put aside for years and years (often forgoing fun stuff like eating out, etc.) have diminished exponentially. It's over £1000 a week for the care home, the council have only just taken over her care payments now it's at a low level.
So, if you've read this far, my takeaway from this is to love your loved ones well. Make lots and lots of happy memories. Keep active - physically, mentally and socially. Take time to enjoy life - saving money for retirement is great, but we don't have any guarantees of what is to come, of what tomorrow will bring. So being frugal is good, stewarding what God has given you wisely laying aside resources for you and your family, but also enjoying your life now with your loved ones now...that is just as important. It's all about balance.
This is the day that the Lord has made; let us rejoice and be glad in it.
Psalm 118:24
Wherever is possible, and I know it is easier said than done, stay positive. Fill your heart and mind with good things and don't pretend to be a mind reader and presume people are being negative towards you unless you have concrete evidence of course!!
Finally, brothers, whatever is true, whatever is honourable, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think on these things.
Philippians 4:8
Casting down imaginations and every high thing that exalts itself agains the knowledge of God, bringing every thought into captivity to the obedience of Christ.
1 Corinthians 10:5
And one last thought, remember how much God loves you and wants the best for you. None of us know what tomorrow will bring, and we must try not to worry. Thank God for today and hug your family. Love God, love people. Connection and community.
Sarah x
