Help! Dealing with dementia

Seren

Registered User
Nov 12, 2005
6
0
Llanelli
Can anyone help?

Can anyone help? I was adopted by my grandparents and call them mum and dad. My mother is in a nursing home. Sometimes she doesn't know who I am and I am unable to have a conversation with her. My father and I were extremely close and he died 3 years ago. I went very depressed after he died and miss him now. I feel as my mum (grandmother) is getting worse and that I am loosing her too. I am the only regular visitor and find it very difficult sometimes. She has been ill for the last 5 years. Another close family member doesnt visit her hardly and we are not on good terms. My natural mum is mentally ill and I visit her too and take her to the home. Can anyone help?
 
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Mjaqmac

Registered User
Mar 13, 2004
939
0
Welcome to the TP family Seren.

I'm so sorry to hear of all the heartache you've been through. Trust me, here you are not alone.

This is a site where we all band together and help each other through the bad (and even sometimes the good) times.

It's only natural that you suffer some depression, living with Alzheimer's/Dementia does that to people but you have found this website now and you never need to go through things alone again. There will always be someone here to help you. We don't suffer alone here. Others will have the same experiences as you and you'll gather strength from sharing with them here.

I lost my mother 7 months ago after nursing her for many years with Alz and two other diseases. This is my first Xmas without her, it will be Bleak House I'm sure because like you I am no longer on good terms with family members because they left us to cope alone, it happens a lot with this disease, but we'll get through somehow. Talking here will help. It will help you too so post as often as you need to.
 

Kathleen

Registered User
Mar 12, 2005
639
0
69
West Sussex
Hello Seren

Welcome to the "family", we all know how difficult life is for relatives of an AD sufferer.

Have you any other close family or friends to give you emotional support at all?

I lost my Dad a year ago and my Mum is in an EMI home after having AD for almost 6 years. She is losing her speech and has no idea who we are most of the time, but even though we can't have a conversation, I still love to see her and chat to the staff and other residents when Mum either "switches off" or goes to sleep.

You are, in a way, losing the mum you have known and loved all these years, but she is still there in somewhere beneath the AD. This is a cruel disease for both sufferers and carers alike, my Mum has now seemingly stopped trying to puzzle everything out and seems totally relaxed about talking gibberish, she even smiles at the end of every sentence - even though that sentence has only contained several words totally unconnected to each other or the question asked of her - it just makes it tougher for us.

The staff at my Mum's home are excellent sounding boards and ,as they know her ways better than I, can really help by talking and explaining about any worries or concerns I may have.

Post here when you need to, I have found so many answers to questions and such a depth of understanding about my feelings of helplessness, grief, guilt and frustration here that it is a real lifeline for me.

I hope you don't feel so alone now, we are all here for each other, so hang on in there.

Kathleen
xx
 

Sheila

Registered User
Oct 23, 2003
2,259
0
West Sussex
Hi Seren and welcome to TP. I am sorry to hear of your troubles, it must be very hard for you right now. Have you tried taking "props" when you visit, a few photos of yesteryear, a CD or tape of music she loved (My Mum loved Vera Lynne)or some poetry she liked. I did this sort of thing and it did help a bit. Also try little treats, special little cakes she likes to have with your cuppa together, flowers of course, but I used to get ones Mum could smell as she liked that and we would sniff them several times throughout the visit then chat about gardening etc. My Mum was in hospital for several weeks, but the same would work in a home. When conversation lagged, I used to sometimes read from a magazine, letters page, problem page, and discuss with her what we would do if it were us etc. Then we would set the world to rights for a while! It all just helped to "prop" the conversation a bit. It is hard I know, but hope maybe something like this could help, but you may have already tried it all. Thinking of you, love She. XX
 

CraigC

Registered User
Mar 21, 2003
6,633
0
London
Hi Seren...

All I can say is that those regular visits you are making make a whole lot of difference. Not just now, but also in the future. Hard work I know, but you are doing the right thing! Take care, and if you need any more help or have any more specific questions, we are all ears :)

Kind Regards
Craig
 

Seren

Registered User
Nov 12, 2005
6
0
Llanelli
Thanks for Support

Thank you for all your kind words. It can be a very lonely when you have a close family member with dementia. Luckily I have a great husband and a couple of good friends. I sometimes feel as if no one can really understands as they have not been through it. I'm sure I also get on their nerves, as I find it hard to be positive.

I am currently selling my parents house and there is bad feeling between my sister and I because of it. I need to pay for my mothers care and I am going through a lengthylegal process to sell the house. My sister hardly visits her mother and often sends me nasty messages. My dad was my reliable family and now he is dead I find it hard. My sister calls me selfish and controlling because I took the firsts steps to sell the property. Yet she has refused to contribute towards the bills. She is a small part owner of the property. This gets me down too as I try to stay positive for my mams sake but I am beginning to question my self worth.

xx
 
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Kathleen

Registered User
Mar 12, 2005
639
0
69
West Sussex
Hello Seren

I am glad you have a supportive husband and good friends, it sounds as if you need them right now.

I have a brother who also does not contribute financially just complains that his inheritance is being eaten up, so I know how you feel on that score. He is currently being a right pain, but I have learned not to respond to his spiteful messages or hurtful remarks.

You have absolutely no reason to feel bad about yourself.

Your Dad would have wanted te best possible care for your Mum and it sounds as though she is getting that care thanks to you, so if anyone needs to feel bad it is our selfish, greedy siblings, but somehow I don't think they do.

Having lost my own Dad, I understand the feeling of grief for him all over again each time you have to face another battle, take strength in knowing you are putting your Mum's needs first in all the dealings with the sale of the property and never put yourself down, you sound like a lovely caring daughter.

Be proud of yourself, take care.

Kathleen
xx
 

Seren

Registered User
Nov 12, 2005
6
0
Llanelli
Thanks

I do not quite understand why our siblings act as they do. How do you deal with your situation? I don't know if I can forgive my sister. She is older than me (she is actually my aunt and godmother but I call her my sister as we were brought up together). She has said some nasty things in the past. I don't know whether there is a degree of resentfulness as I am not the biological daughter, but the grand daughter and was brought up by her parents after they had retired.

When my father died I continued to visit my mother in the home. It was very distressing as she used to cry and call out his name. Often I would go home crying myself. . I often worry that my mam will die and how will I cope? A bereavement is an awful thing to go through as you well now.

There is one thing that keeps me going and I don’t know whether other people would take comfort from this. When I got married last year I kept on telling my mam, I’m getting married in August. Every time she remembered who I was, she cried as she was happy. But she would always forget what I had told her or who I was the next time I visited. I often felt that my visits were not doing much good. One day a new carer who didn’t know me said to me “Are you Gwladys daughter?”., I said yes. He told me that she had told him that I was getting married, that she was glad as I am my own boss now. The amount of times I had told her and thought she hadn’t understood or remembered made it all worth while.

xx
 

Sheila

Registered User
Oct 23, 2003
2,259
0
West Sussex
Seren, treasure those memories, the disease can't reach those now they are shared! Try not to let family selfishness get you down, if it is all done legally then she doesn't have a leg to stand on.Lotsaluv, She. XX
 

Kathleen

Registered User
Mar 12, 2005
639
0
69
West Sussex
Hello Seren

You ask how I deal with the sibling situation.

You have to learn to live and let live.

As children we were inseperable then in adulthood he, or maybe both of us, changed

If he chooses to think and act as he does, no amount of anger or distress on my part will change anything.

We are all adults now and if he is not a part of my life, so be it.

At times that matter we will be there for each other for example the last days of Dad's life when we put all differences aside. The hospital staff were amazed at what a close family we were -- if only they knew.

No matter, Dad died with a calm friendly atmosphere around him, he mattered then more than us, so we overcame it all.

We are only human and all have our quirks and faults, if siblings don't get along, there is no point beating ourselves up about the situation, as it is unlikely to change.

Live your life as well as you can and try not to let your sister's remarks get to you too much, it does not mean either of you are right or wrong, you are just two individuals who happen not to think and act the same way.

It will get easier for you I am sure, you develop a tougher skin.

I too can not bear to even think about Mum dying even now she is entering the final stage. It is just too painful to look into the future, so I live, like our friend Norman, day by day.

I wish you well over the next few weeks and hope you have many good times with your Mum.

Keep your chin up and be proud of who you are.

Kathleen
xx
 

ginger

Registered User
Nov 13, 2005
21
0
NE Lincs
It is so hard

I can relate to your situation, my mum is in the latter stages of AD. which she has had for 13 years. Mum has been in a nursing home for 5 years now, this was the hardest decision I have ever had to make- but not one that I regret as I could no longer provided the special care she needed. I have two brothers who love Mum dearly but have problems coming to terms with the debilitating effects of AD. Although we feel abandoned by our siblings we need to understand that not everyone is able to cope.
Mum has lost her ability to speak, walk, feed or do anything for herself but I still visit and carry on as if she is able to understand. Recently 5 weeks ago I was told Mum only had approx 48 hrs to live due to a chest infection, I spent three days and nights with mum, although she was so ill I still consider this to have been a special time, being able to be with mum, I spoke endlessly about the good times we had spent together as a family. Initially I had to make the decision as to whether she was admitted to hospital but decided to keep her in the nursing home as previous hospital admittance had proved to be too traumatic for her. Although she is still very poorly, she is comfortable and is being cared for by devoted staff. It is so hard for families to watch their once vibrant loved ones change to being so dependent on others for everything, my advise is hang on in there and think someone has to make decisions in the best interest of their loved one.
 

Seren

Registered User
Nov 12, 2005
6
0
Llanelli
Nice to talk

I am amazed at the number of people in a similar situation to myself. My mum started developing early signs of dementia when I was sixteen. She finally became too ill to be looked after by myself or my dad so she went to a Nursing Home in 2000. She used to be a cuddly, attractive, kind woman, who cared for everyone, now she's very thin, hardly speaks and doesn't now where she is or what’s going on. I'm glad that you are out there to relate to what I'm going through. Maybe in time I can deal with the situation with my sister as now I feel as if I'm not so alone. I'd like to think when the time of her passing comes, I'll be strong enough to deal with it and that I'll feel that I did what I could for her. I tend to always feel guilty no matter what I do. I get the feeling there's probably a lot of us out who experience guilt even though we try our best. take care xx