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I'm lost and so sad!

(7 Posts)
thewreckofthehesperus Wed 29-Oct-14 20:45:40

My father was diagnosed with vascular dementia 5 years ago at age 56. Since then he's sunk quickly with the irony seeming to be the younger you're diagnosed the faster you deteriorate.

I was his main carer for three years before my mother agreed to take over so I could go back to work full time. After that i helped out and I sorted out all the paperwork/red tape/doctors appointments.

I got married at the end of last year and I'm so glad that we were able to do it while he was well enough to still walk me down the aisle. One of my most memorable moments was standing outside the church about to walk in and him asking 'why are we going in here?'Not to mention the big hug he gave me when i told him i was getting married that day.

He sank fairly quickly after that to be honest and after a massive struggle with red tape we managed to get him into a great nursing home in march.

The problem is ever since I was able to take a step back and breathe for a second I just feel completely lost. I have forgotten what life is without having to deal with this horrible illness. i feel broken and so desperately sad knowing that he would've hated ending up in care but it just became to much for any of us to handle. I don't know how to deal with this grief, it's just never ending.

I don't even know what I want from this post but if you've been through similar and have any advice on how to keep sane it'd be appreciated!

Catnuzzle Wed 29-Oct-14 20:50:55

I have no experience of what you are dealing with and going through but wanted to give you a hug and flowers

thewreckofthehesperus Wed 29-Oct-14 20:53:46

Thank you Catnuzzle, just feeling low today.

PositiveAttitude Wed 29-Oct-14 21:02:34

No advice on how to keep sane, but some more thanks from someone who's mum has alzheimers and I am struggling with the guilt of feeling that I would prefer my um to just slip away now before she loses anymore of her faculties. She doesn't have a clue who I am any mum who was the most loving, caring mum ever. She loved babies and children - she had 5 children and has 21 grandchildren and now 2 great grandchildren.

thatsn0tmyname Wed 29-Oct-14 21:06:42

My dad went into care in March '13 and died in the February of this year. Mum and my brother struggled on as long as they could but the house was unsuitable for his needs and for the first time their was real friction and frustration in their relationship. Mum wanted someone medical to step in and make the decision for her as she struggled with the guilt. He was given fantastic care once 'in the system' but it was hard. He was hoisted everywhere and lost all his remaining strength quickly. He kept asking to go home. We would say 'when you're better' but it felt like a lie. He was upset receiving personal care and that was hard to see. His care home was beautiful but like a primary school full of displays and 'do you remember' props. During our first visit I struggled not to cry as they all sat and sang nursery rhymes. We visited as often as we could and got to know all the residents and their relatives which helped. With dementia the grieving starts during life so when he died it was a relief. I often cried on the way home from a visit. I have no advice, I'm afraid. Regular visits to see him helped to normalise the whole process and allow yourself to grieve now. X

thewreckofthehesperus Thu 30-Oct-14 19:29:42

Thanks for the advice. I've been thinking over going to see a counciler and I think I might just bite the bullet and do it.

Thanks again flowers

Ronat Fri 31-Oct-14 21:57:35

Hi-I can help you with food supplements which will possibly improve his condition. All are available on line, some are expensive, but well worth it. I am also a behaviour therapist and main carer for my 94 year old mother, who stays with me, has front temporal lobe dementia, Asperger's syndrome and ADHD. If you are interested in my advice please contact me. Also, see if you can get his GP to prescribe these supplements once you check them out, as most nursing homes are reluctant to administer unprescribed meds. They are not meds, but food supplements, but hey ho.

You will see an improvement for certain but mental attitude is also crucial. Try to involve him in community activities if possible, if you do see an improvement. He seems to have given up too easily, and that will exacerbate his condition!
As I said, give me a shout for the list of my mum's supplements and their websites.

Cheers, Ronat

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