Autism, Death and Dementia!

Dolly

Dolly

Member
Location
Welsh Borders
OK! I'm new so thought I'd get this out of the way. Our daughter and only child was diagnosed with autism and epilepsy in 1981. She had no speech to speak of, was beautiful looking, and had severe epilepsy. My husband and I were her sole carers. he was a wonderful dad, one of the best you could imagine. My mum lived with us from retirement in 1980. She had been matron of a social service old folks home. The three of us were an awesome team, there was nothing we couldn't cope with.
The wheels started to come off in 2009. My husband had a heart attack and was in coronary intensive care for some time. We had given up smoking in 2005, and neither of us felt well since(lol) he recovered and apart from winter bronchitis has no ill effects. But it made us aware of the fact we were getting older

In 2010, out of the blue and very suddenly our beautiful daughter died whilst in an epileptic seizure. The shock and grief was indescribable.
In 2011, suddenly my mum started acting oddly, took no interest in her appearance and became very nasty. As a nurse I knew what was wrong... dementia. It absorbed her quickly and she entered end stage in 2012. Because she was violent, she had to go into residential care. It cost a lot but the home was fantastic. She died on January 6th this year. The old cliche 'happy release' has never been more apt.

So now there is just the two of us and the dog. We have moved house, from a large 3 storey, 4 if you count the basement, Victorian villa with 3 double bedrooms and 2 single, to a small semi in a quiet cul-de-sac and we are at last finding time to get our breath back and take stock. We didn't move immediately after our
daughter died (she was 32) because we would have taken all the emotional baggage with us. We waiting until the numbness wore off and moved last February. We are very happy here. It took a while to settle, everything felt strange after 38 years in the same house but we have made friends and have now settled in.

The weight piled on me after the shock and my knees are suffering so my aim this year is to eat sensibly and get this 'lard' off. Its no good crash dieting for me. I'd lose the weight OK but couldn't sustain a spartan regime. Slow and steady will be my watch-word.

We may have gone from a family of 4 to a family of 2 but we are still a close little family, just a bit smaller that's all
 

Dolly, I'm so sorry to hear about your daughter. My sincere condolences to you and your husband, what a terrible loss. :rose: I just got a taste of epilepsy with one of my dogs, she had severe cluster seizures, and I know what kind of care and attention is needed for those afflicted. To have your daughter die during a seizure must have been devastating.

I think it's good that you both moved and downsized. Your husband sounds like a very caring fellow, and I'm happy that you have him and the pup for company and support. Alzheimer's has been in my family also, it's very frightening when simple memory loss turns into this overpowering disease. Wishing the best for your mom.

Hoping you and hubby have a brighter and healthier future. You've been dealt a heavy hand, and you've both shown great strength in dealing with all the sadness. Take good care of yourself, I'm glad you shared this with us...(((hugs))). :love_heart:
 
So sorry to read this litany of woe, Dolly. A great challenge for you to endure and my prayers are with you.

I hope you continue to be able to make progress with your weight loss and feel better. They have a lot of knee replacement surgeries here and too much weight certainly will put more strain on your knees.

I hope you have access to support in your community in dealing with the emotional and health toll this may have taken on you. And I hope this online site proves to be a good outlet for you as well.

God bless and strengthen you both.
 

SeaBreeze said:
Dolly, I'm so sorry to hear about your daughter. My sincere condolences to you and your husband, what a terrible loss. :rose: I just got a taste of epilepsy with one of my dogs, she had severe cluster seizures, and I know what kind of care and attention is needed for those afflicted. To have your daughter die during a seizure must have been devastating.

I think it's good that you both moved and downsized. Your husband sounds like a very caring fellow, and I'm happy that you have him and the pup for company and support. Alzheimer's has been in my family also, it's very frightening when simple memory loss turns into this overpowering disease. Wishing the best for your mom.

Hoping you and hubby have a brighter and healthier future. You've been dealt a heavy hand, and you've both shown great strength in dealing with all the sadness. Take good care of yourself, I'm glad you shared this with us...(((hugs))). :love_heart:
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Well, we looked at it this way; if we sat in a chair with tears and long faces, just letting life pass us by as we thought 'Why us?' it would serve no purpose whatsoever and our daughter would have died for nothing. So, we got out and about, have made new friends and are starting to enjoy life. Yes, Christmas and birthdays are land mines but time is starting to rub the hard edges off the memories and our memories are golden now.
 
Dolly said:
Well, we looked at it this way; if we sat in a chair with tears and long faces, just letting life pass us by as we thought 'Why us?' it would serve no purpose whatsoever and our daughter would have died for nothing. So, we got out and about, have made new friends and are starting to enjoy life. Yes, Christmas and birthdays are land mines but time is starting to rub the hard edges off the memories and our memories are golden now.
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That's the right approach for sure. And doing it to honor your daughter makes even more sense.
 
Dolly said:
Well, we looked at it this way; if we sat in a chair with tears and long faces, just letting life pass us by as we thought 'Why us?' it would serve no purpose whatsoever and our daughter would have died for nothing. So, we got out and about, have made new friends and are starting to enjoy life. Yes, Christmas and birthdays are land mines but time is starting to rub the hard edges off the memories and our memories are golden now.
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I love,love,love this philosophy! You are so right here and congratulations to you both for recognizing that. Such a wonderful way to honor your beautiful daughter :)
 
Dolly, like many here, I know the heart ache you are trying to mend. Although, much of what you have had to endure to be able to just love your child and parent was surely draining on you, those same characteristics that helped you endure will now help you go on. Many of us find out we must continue if for no other reason, than to honor the strength we saw in very people who were fighting for their their lives.
I'm sure making a new life for yourself is scary, but it must be exhilarating at the same time. When you get down, just picture your loved ones watching and discussing just how you might go about things.

I hope you like us, and let us get to know you. :Hatoff:
 
Dear Dolly I feel for you,having lost your beautiful daughter and mum, my sympathy goes to both you and your husband,you have certainly had your share of troubles, glad to see your hubby is doing well and that you have both moved on to happier times,wishing you the best in your endeavour to lose weight,I don't know if it's true or not but I have heard that Oolong tea is a help in loosing weight ,I'm thinking of giving it a try.
 
Dolly, I understand. Kudos to you and your DH for making a success of your new normal. I like your view:

"Well, we looked at it this way; if we sat in a chair with tears and long faces, just letting life pass us by as we thought 'Why us?' it would serve no purpose whatsoever and our daughter would have died for nothing. So, we got out and about, have made new friends and are starting to enjoy life. Yes, Christmas and birthdays are land mines but time is starting to rub the hard edges off the memories and our memories are golden now."

It's how I try to live, too...sometimes successfully and sometimes not! I often take my memories out of my memory bank and remember DS and DH and the very best times. You're right...memories are golden.
 
GeorgiaXplant said:
Dolly, I understand. Kudos to you and your DH for making a success of your new normal. I like your view:

"Well, we looked at it this way; if we sat in a chair with tears and long faces, just letting life pass us by as we thought 'Why us?' it would serve no purpose whatsoever and our daughter would have died for nothing. So, we got out and about, have made new friends and are starting to enjoy life. Yes, Christmas and birthdays are land mines but time is starting to rub the hard edges off the memories and our memories are golden now."

It's how I try to live, too...sometimes successfully and sometimes not! I often take my memories out of my memory bank and remember DS and DH and the very best times. You're right...memories are golden.
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These are such healthy outlooks. People who have had significant loss and trauma in their lives can go down with the ship or determine to survive and hold onto the positives and appreciate all blessings small or big and thrive.
 
Hiya! The bad penny has turned up again. The slow but sure diet went well. 6 stones off (that's, hang on I've got to find the calculator, 84lbs) Our old dog died so we had no other responsibilities except ourselves, and decided to have as many holidays as we could afford. We have no close living relatives and the distant ones never bothered with our daughter or visited so we are spending the money on ourselves. We've been to Scotland (Lochs and Glens if any one from the UK knows them) a fantastic holiday one to always remember. We went in October, came home and booked again straight away for next October. In January we are going to a holiday village for week and in April on our second cruise. This time we are going around the coast of the UK. Yes I know, you don't have to tell me, we both sound very selfish don't we?
 
Dolly said:
Hiya! The bad penny has turned up again. The slow but sure diet went well. 6 stones off (that's, hang on I've got to find the calculator, 84lbs) Our old dog died so we had no other responsibilities except ourselves, and decided to have as many holidays as we could afford. We have no close living relatives and the distant ones never bothered with our daughter or visited so we are spending the money on ourselves. We've been to Scotland (Lochs and Glens if any one from the UK knows them) a fantastic holiday one to always remember. We went in October, came home and booked again straight away for next October. In January we are going to a holiday village for week and in April on our second cruise. This time we are going around the coast of the UK. Yes I know, you don't have to tell me, we both sound very selfish don't we?
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84 lbs .. fantastic! - and, definitely NO, you are not selfish at all. I admire you and your husband for moving forward with your lives. Keeping busy, traveling while you are able, is wonderful. Keep on doing what you're doing. Living life to the fullest.
 
RadishRose said:
Dolly, I wasn't a member here when you first posted ... let me say I felt bad for you after reading of your losses but happy you're going on with life! :)
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I love your avatar Rose. Yes, life is good. You never get over a loss like that but you get used to it.
 
Pinky said:
84 lbs .. fantastic! - and, definitely NO, you are not selfish at all. I admire you and your husband for moving forward with your lives. Keeping busy, traveling while you are able, is wonderful. Keep on doing what you're doing. Living life to the fullest.
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Hello Pinky. I love Canada, have pals in Montreal. Toronto is a beautiful city. Yes, we keep on looking forward, never back. Sometimes it catches us out though. Especially this time of year, you sometimes see something and an old memory pops up and you're not prepared for it.
 
I'm no expert but I found in the early days that people were not as half bad as the TV/Media etc portrayed them. If I felt like crying, no matter where I was, I let it go. Folk were amazing. In a queue at the market, bus stop shops whatever. I let the tears flow. People were so understanding. It did me good , they felt they had helped and we were all benefiting from it. I learned a valuable lesson. People are not half as bad as we think.
 

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