How has dementia impacted you?

Lizanne

New member
Sep 22, 2018
2
Dementia/Alzheimer - call it and its variants whatever you like, but the positives are few and far whereas the negatives seem relentless. I have spent the last five years working as a lead carer in a dementia care home and have just resigned to look after my Mother-in-law who has dementia and lives with us. The residents in the home had a variety of conditions, but I don't believe any of them would want to be in their situation. Certainly most families felt their loved ones would have hated the demeaning indignities that goes with the disease, and the terrible change to personalities. Add to that the cost of care and its no wonder that relatives weep and argue and families fall apart. Get any other disease in this country and the state will cover much if the costs, get Dementia and you are on your own.

Carers in homes and in the community are often unskilled and as such underpaid. For many it is just a job. With the shortage in care staff, almost anyone can become carer. Unfortunately I have found that many of them really don't care. In the end it was a relief to leave the care home. At work I was permanently stressed and angry, seething inside at seeing the same lack of care day after day. And the residents don't complain. They can't.

Now at home looking after a MIL. I don't love her, never have. But her other children have no interest in caring. My husband and I have the space now our children have left, and felt this was the right thing to do. Isn't that what all her children are supposed to feel? In the last 18 months her health has declined rapidly - she is 89! She had a small stroke a couple of months ago, was in hospital for a couple of weeks and sent home with a bucket of medications to treat a variety of ailments. Why? She hates her current situation. She is doubly incontinent and unable to walk. Ask her and she will tell you it would be better if she were not here.

And add to the mix that I now have grandchildren, and I would love to have more time with them. I would love to have more time with my children. I hate being tied to Dementia.

It is an awful awful disease. Positives? Ha, ask me again when this is all over. In the meantime I shall carry on coping with all the negatives.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,835
69
Dundee
How useful to read your list of positives and negatives. I am apparently not a very nice person especially when communicating with other family members via social media platforms!! And when one problem arises and is eventually solved lanother problem comes along. I feel like my character and relationships suffer enormously as I lose patience with my siblings and lack tolerance in close personal relationships.

I hope I am able to achieve such clarity in my thoughts and eventually list all positive and negatives in this way, then just move on.
Thank you for your thoughts @pep57. I'm very much aware that it's coming up for 3 years since my husband died. I don't think I could have had that clarity whilst I was caring for him. I'm not so sure I've moved on though, I doubt if I will ever completely move on.

I can so relate to your points about losing patience and tolerance.
 

James V Howerton

New member
Feb 4, 2018
3
Our media team are looking for people to share their positive and negative stories to help change the narrative surrounding life with dementia.

Has being diagnosed with dementia led you to develop a new hobby? Have you fulfilled an ambition since your diagnosis? Have you or has someone you know with dementia started to get more involved with your local community after diagnosis?

People often describe feeling isolated or left out after being diagnosed with dementia. Have you or has someone you know with dementia found it harder to interact with loved ones or feel a part of society after a dementia diagnosis?

Let us know your thoughts below :)
I guess it has taken me about a year to get past denial and except the fact that my Sally Ann is dying a little bit each day right before my eyes. I was prepared for cancer and other diseases, you at least have some hope. As a man and husband I'm wired to want to fix her. We tell everyone that we're a set. She's pepper because being half Japanese she's spicy and I'm salt.
The last few days I've witnessed a drastic change in her ability to be around people. She told me that she hates everybody. Then asked why she did. She has started pointing out all the negative things about people which really sucks the air out of the room.
Yesterday she became so agitated I thought I would have to put her in the hospital. When we get off the bus at home we always hold hands and I check to make sure know cars are coming. Yesterday when we got off she took off without even looking and could have gotten killed. I tried to convince her in the strongest terms how dangerous it was. Sally Anns response was very short and sweet, I had to pee. Now I ask you, how are you going to counter that. LOL
I don't wish to sound like life has no meaning. I am hoping someone who is experiencing similarities might have some advice.
I will tell you that the word hate for this disease doesn't qualify! My feelings of being a failure which intellectually I know isn't true is always in the back of my mind.
Now that I have felt sorry for myself I would like to share with you that because of Sally Anns situation it has taught me patience. I have fallen in love with her more and more every day. All the things I took for granted I do know more like when she crawls into bed with me because she is feeling insecure or scared even though most of the time she does it just to get me to get up and make coffee.
I've learned to listen to not just what she is saying, but how her body is acting. I tell you that the times when she has clarity and we talk is like nectar from God.
I will shut up now and just say that I know that God doesn't make mistakes and I believe that He created me to to have the privilege to love and take care of Sally Ann.
I look forward to hearing from you the community
 

James V Howerton

New member
Feb 4, 2018
3
Dementia/Alzheimer - call it and its variants whatever you like, but the positives are few and far whereas the negatives seem relentless. I have spent the last five years working as a lead carer in a dementia care home and have just resigned to look after my Mother-in-law who has dementia and lives with us. The residents in the home had a variety of conditions, but I don't believe any of them would want to be in their situation. Certainly most families felt their loved ones would have hated the demeaning indignities that goes with the disease, and the terrible change to personalities. Add to that the cost of care and its no wonder that relatives weep and argue and families fall apart. Get any other disease in this country and the state will cover much if the costs, get Dementia and you are on your own.

Carers in homes and in the community are often unskilled and as such underpaid. For many it is just a job. With the shortage in care staff, almost anyone can become carer. Unfortunately I have found that many of them really don't care. In the end it was a relief to leave the care home. At work I was permanently stressed and angry, seething inside at seeing the same lack of care day after day. And the residents don't complain. They can't.

Now at home looking after a MIL. I don't love her, never have. But her other children have no interest in caring. My husband and I have the space now our children have left, and felt this was the right thing to do. Isn't that what all her children are supposed to feel? In the last 18 months her health has declined rapidly - she is 89! She had a small stroke a couple of months ago, was in hospital for a couple of weeks and sent home with a bucket of medications to treat a variety of ailments. Why? She hates her current situation. She is doubly incontinent and unable to walk. Ask her and she will tell you it would be better if she were not here.

And add to the mix that I now have grandchildren, and I would love to have more time with them. I would love to have more time with my children. I hate being tied to Dementia.

It is an awful awful disease. Positives? Ha, ask me again when this is all over. In the meantime I shall carry on coping with all the negatives.
I can not for the life of me understand anything about this disease. The one thing I do know is just be low the surface seems like all hell is ready to come forth. Petty whoever happens to step on my last nerve!
That was an example of my problem solving skills before my Sally Ann was diagnosed with vascular dementia.
When I worked in nursing homes and mental hospitals it was supposed to be simple, clock out and leave work at work. Well that worked for awhile. I started learning to love even the mean ones because as a Christian I know that we are His creation and everyone I got to take care of had worth. By getting involved with their families and allowing them in my life everything changed. Did I become angry at times or get my feelings hurt, sure I did.
Obviously our experiences are different. It doesn't take long to get burned out, then we really are in the way because any patient who picks up on our anger will automatically believe they have done something wrong. Over time trust issues begin to take place.
With my Sally Ann I have really had to work hard at having patience. I also have fallen in love with my Sally Ann more and more everyday.
I really don't know I'm trying to convey to you. It just feels wonderful to talk to someone who just might understand.
I'm truly sorry for what you have had to deal with with. I really have know use for the family. They at some time in life regret what they've done.
Please take a moment and recognize that God has put you in this situation because you are the best one for this person's care. God doesn't make mistakes so please give Him the Glory in all things. If I didn't believe in what I asked you to do I couldn't take care of her.
Thanks for letting me ramble.
 

Elle3

Registered User
Jun 30, 2016
642
My dad was diagnosed with Advanced Dementia in 2017, he was 80, but had been showing many signs of Dementia for about 3-4 years previous to diagnosis, he was in denial and when he was diagnosed he wasn't told.

I find the whole thing of Dementia quite sad as Dementia robbed my otherwise very fit and active dad of his life. His friends could no longer cope with his forgetfulness, stubbornness and his inability to communicate. He forgot how to drive, couldn't understand the difference between day and night, became very confused and convinced people were hiding or stealing things from him which made my otherwise quiet and placid dad sometimes aggressive and angry.

I can see no positives. His inability to understand simple things and communicate effectively and look after himself caused him to put himself at risk, hence the reason why he had to be placed in a care home for his own safety in April 2018 age 81. From being a fit, healthy and active person, who took no medication. I saw my dad age overnight, he gained weight, became less mobile, became more aggressive so was given medication to counter it, became doubly incontinent, couldn't feed himself and lost all interest in everything. He died after just being in the care home for 11 months from a heart attack which in some respects was a relief. But I firmly believe dad would still be fit and well now and still going strong if it hadn't been for the Dementia.

If I have to look for a positive, from my point of view it brought me closer to my dad and I saw a lot more of him than I probably would have done normally.
 

Sika

New member
Apr 6, 2019
1
Totally agree with cattiza, I have changed as a person ,looking after my mother for six years with AD feel down and cry a lot for me and for her this is the cruelest disease with absolutely no support the only positive is when she still smiles at me .

It has been an emotionally draining journey for me. I've been taking care of my mum who's now 83 and suffering from Dementia. Its now been about 5 years now. It was only through the assistance of her optician that I was able to confirm her diagnosis.

She has a live in carer and each visit I make is a tough one. As i try to visit at least each month. Yesterday was my lowest point when I could sense the carer was getting frustrated with everything. I've been crying since. In my part of the world homes that provide such care are not available. I'm just praying and trusting God to strengthen and pull me through. It is very tough watching your dear one fade gradually from you.