I guess this is rather a personal post. We’ve had a lot thrown at us in the last couple of months that we weren’t expecting. Teenage years have left a firm imprint on my brain as one child copes with brain damage in the unforgiving community, but we’ve suddenly been thrown into a bigger quandry.
We decided to take a last minute holiday with our camper van. The weather was a disaster in the North of France, so we headed South and kept driving until we reached the Med. It was fabulous for the boys as they’ve never had a sunshine holiday where the water is warm before.
I’m glad we did it as we’re unlikely to be able to do that again. I’ve come home to find out my mother, who had begun the descent into dementia, is no longer able to control her medication, insulin, nor remember what she’s doing from one hour to the next. She was a mess when I got back, even though my brother came in every day. She’s a very introverted woman and refuses contact with people outside the family and as she lives with us, the extra hours a day is becoming difficult to manage with the boys already.
My dad, who I don’t really know very well, has also quickly descended from mild dementia to 24 hour paranoia, but the hospital is nearly 90 miles away and impossible to get to often. He’s hopefully moving to a geriatric psychiatric unit where he can be monitored 24/7, but I can’t go down there often. I can’t leave my mum here alone without some good planning.
My first comment to one of the nurses was ‘there lies my future,’ at which point she looked quite shocked. I’ve done quite a lot of research on dementia and thankfully, both my parents got to eighty before theirs deteriorated. I have to hope that continuing to be creative, researching and writing will help keep my own brain active as I grow older.
Both of my parents were very stale with using their brains for a long time. My mum would read, but she lacked external company. She shunned the world for her family, and my father was never known to read a book.
That all pales into insignificance with the knowledge that both my parents are very mobile wanderers. I’m finding it tough right now to cope with it all, but I’m planning turning my lemons into lemonade and swimming madly in the sugary water.
I know, that in time, I’ll miss having them around and I might even face putting my mum into a home, but she’s not strong enough to cope with it and I don’t want to do that.
This week, I’m looking for ways to get help in my home. Unfortunately, everyone keeps looking at me as if it’s my responsibility as she lives with us, but I don’t want to end up resenting her for the extra work.
I’ll do what I have to do with a smile on my face, but I don’t have to like it. Yes, I know that sounds selfish.
I feel better for letting it all out. I’m not fishing for comments, but if you wish to say something, please feel free.
I’ve dealt with same issues on this side of the pond and looking back I wish I’d had someone to talk to and be honest with. The caregiver role is very, very difficult and finding help and getting the person with dementia to cooperate with that help is draining.
My 93 yr old mother-in-law lived with us and a couple of years into her dementia my mental and physical health was affected. Be careful of this. You need to take care of yourself and not feel guilty.
Eventually we placed her in a memory facility because it became very unsafe to do otherwise. Please see if there are support groups with others going through the same thing and please feel free to contact me via e-mail if you just want to talk or blow off steam because believe me, I felt very alone during this whole process.
It’s getting help which proves harder than I thought. A doctor told me yesterday that as she lives with me, she wouldn’t be seen as urgent, which I can understand, but it’s still a big ask.
I think it is the feeling guilty thing that does get to us. I know that at some point, more decisions will need to be made, but more quickly for my father who lives alone. Thank you for your comment. It’s much appreciated.
I’ve just found your blog while googling for info on using human pharmacies for vet meds(!) and the Scottish bit interested me so I decided to read some more of your posts.
I can really identify with your dilemma as dementia and acquired brain injuries are heartrending and exhausting to manage particularly when that parent is resolutely insular. Having the person at home feels like the right thing to do but it can become an intolerable burden and your needs are important too. Almost as bad is trying to navigate the “care” system which takes even more resilience than it does to deal with the demented relative unfortunately. However, they are allegedly there to assist and you should insist on a carer’s needs assessment and your entitlement to respite so that you can take a break and continue your caring.
I wish you well and look forward to following your blog.
RedSetter
http://gonebeading.blogspot.co.uk/
Thank you for reading and taking the time to comment. I really appreciate the effort. Navigating the care system has proved harder than I thought, but hopefully it gets easier with time.
x
Thinking of you – my Dad had to become carer for my Mum and he found it almost unendurable for all sorts of reasons x
It certainly is a whole new life challenge, isnt it?
x
Dementia is an evil beast, but not inevitable. It’s a heavy vein through my own family, but whereas my MawMaw (that’s West Virginia for Grandmother) has whittled further into dementia, her sisters, whom were both far healthier in their food choices and lifestyle choices, evaded the devil entirely.
It’s good to see that the studies at Case Western and Harvard have shown that reading or learning a new language as well as diet, exercise, and vit D supplementation can realllly make a difference.
My positive thoughts are with you and your family. Love your blog.
Thank you very much for commenting. It’s taken me a while to get back round to answering people, but I appreciate every one.
x
My love & prayers are with you as you face the difficult road ahead ……. take time for yourself, it’s not selfish- it’s necessary and will help you to function & cope with both Mum, Dad & sadly an unforgiving community.
Thanks, I’m sure it will all work out in the end. It’s the adjustment I think because it’s happened so quickly.
Don’t feel guilty and don’t worry about sounding selfish. I remember well the difficulties and guilt my mum faced when my Nan became ill and has to live in a nursing home. It’s not just the work you put in but the emotional difficulty of seeing someone you love being ill. Do your best for her and your family, but remember to take time to look after yourself too and take help where you can get it.
Good luck with it all.
I feel so ungrateful complaining about it. I know my mum never complained once when she had to look after her mum. It makes me realise just how strong my mum has been.
We are the sandwich generation and I really feel for you. I only had a short time looking after young children and my Mum, but that glimpse was exhausting.
My only advise is DO NOT martyre yourself to looking after your Mum. If dementia has a grip, she will not know any difference and there is no shame in a home.
I know through experience that I will go into a home rather than leave me to my boys to look after.
Sending you virtual hugs, chocolate and whatever your poison is
It is more tiring than I expected and can only get worse if carers don’t come in. I don’t plan doing it all alone but I’d like to try keeping her here as she has her own flat in our house, so if carers come in to wash and dress her and put her to bed, that’s the heavy stuff done.
What an honest post. I admire your talking about it and wish you the best in getting all sorted.
Thanks Emma. It’s always hard to know what to put out there, but I guess our blogs would be completely bland if we didn’t share the tough times too.
I appreciate and admire your honesty – it makes me a little crazy that we are supposed to deal with all of that and put a happy smile on our face as well!! I hope you do find some help and some time for your self. Sorry to hear that your son facing a difficult time…
Hugs,
Thank you Sharon. Waiting to hear about an assessment of need, so am hopeful for respite and possibly help to get her washed and dressed daily. It’s happened so fast with them both that it’s been quite a shock.