Introducing myself

maggie123

Registered User
Jan 20, 2012
16
Just testing the site. I am a carer for my husband who has frontal lobe dementia which he has had for approximately 5 years. I think I need someone to talk to at times as although I have friends, I have no family nearby whom I can share my thoughts with. It would be good to be able to talk to like minded people sometimes.
 

Necion

Registered User
Sep 26, 2010
1,364
Aberdeenshire,Scotland
Hello Maggie, nice to meet you, and welcome to TP. You now have a whole new family, which you can switch on or off as you please!!

I'm sorry you need to be here with us, all here because of this awful illness - dementia - whichever type it is.

You'll find lots of support and advice on the site, and plenty friends too.

Lots of love, Necion.xx
 

janrob

Registered User
Oct 6, 2011
5
Lancashire
Hi Maggie nice to meet you and well done for having the courage to post a message. I joined a while ago but have only recently plucked up the courage to send a post.
I'm sure you will find lots of friendly people on here who between them have a wealth of information and advice to help.

Jan :)
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello Maggie and welcome from me too.
I am sure you will get much support here - there is a wealth of knowledge and support.

I am sorry to hear about your husband. If you need to share your experiences or any thoughts please post again.
Best wishes
 

Kathphlox

Registered User
Dec 16, 2009
1,091
Bolton
Hi Maggie

Everyone on here has experience of caring for a dementia sufferer, we all share the same common ground. Unlike our friends who have no idea about dementia and think we are boring them to death, yes honestly, I was told that from someone on my chat channel... because it's a large part of our lives we tend to talk about it a lot. :D
 

Harriet66

Registered User
Mar 23, 2011
91
Hi Maggie - Really sorry to hear about your husband.It can be a pretty lonely journey. There will always be someone here though to give practical advice, a shoulder to cry on or even a much needed giggle sometimes. Hope you keep on posting.
Harriet
 

maggie123

Registered User
Jan 20, 2012
16
I haven't replied to many posts as yet, but have refound the site and realised how helpful it could be. Seven years down the line although I am keeping my head above water, deep down I am very much regretting that I am unable to do the things in my life that I wanted to, and that time is running out. I am 67 and used to be very active but am unable to nip off to do things as I used to.This might seem terribly selfish as some posts make me realise how people are managing in situations 10 times worse than mine, but at the moment I am fighting to keep some semblance of normal life, otherwise I envisage such a darkening and tunnel like existence in the future, that I get depressed and unable to care properly for my husband. Does anyone else feel like this?
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,450
Dundee
Hi Maggie. I'm glad you found the site again. Welcome back.

I can understand how you're feeling. I'm 62 and my husband (who is 82) was diagnosed 12 years ago. Sometimes I think about what life might have been like without dementia. I think we just have to take one day at a time.

Looking forward to seeing you around the site. X
 
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Miss Merlot

Registered User
Oct 15, 2012
3,260
What Necion said! Welcome here...

Hello Maggie, nice to meet you, and welcome to TP. You now have a whole new family, which you can switch on or off as you please!!

I'm sorry you need to be here with us, all here because of this awful illness - dementia - whichever type it is.

You'll find lots of support and advice on the site, and plenty friends too.

Lots of love, Necion.xx
 

jkt

Registered User
Aug 23, 2011
9
WEST MIDLANDS
I haven't replied to many posts as yet, but have refound the site and realised how helpful it could be. Seven years down the line although I am keeping my head above water, deep down I am very much regretting that I am unable to do the things in my life that I wanted to, and that time is running out. I am 67 and used to be very active but am unable to nip off to do things as I used to.This might seem terribly selfish as some posts make me realise how people are managing in situations 10 times worse than mine, but at the moment I am fighting to keep some semblance of normal life, otherwise I envisage such a darkening and tunnel like existence in the future, that I get depressed and unable to care properly for my husband. Does anyone else feel like this?
Hi Maggie I know how you feel I am 66 and feel lonely at times when we retired we had. Such plans which we now can't do my husband has vascular dementia he has had it for 4 yrs. short term memory has gone mobility very poor have good friends one in the same position as myself so there for one another. Hope you have good friends you need them with this terrible disease take care
 

benjie

Registered User
Apr 14, 2009
347
north staffs
Hi Maggie123 and welcome. I was in total shock and despair a few years ago and then came to my senses and started to make plans for different things. Hubby also became disabled through 5 moths hospitalisation with severe illness. Bought a wheelchair access vehicle and started being together again, even went to Llandudno on holiday:D. That was 2 and half years ago and now regrettably he's had to go into a nursing home. Oh the despair and guilt came back with a vengeance but 5 months on and I see how much better he is as he's getting quality care, plenty of food and more importantly more interaction with a variety of people. And I can go and see him whenever I want and enjoy the old relationship we had in the past.

Best wishes, Benjie
 

maggie123

Registered User
Jan 20, 2012
16
I'm glad that you've had some positive experiences.

Hi Maggie123 and welcome. I was in total shock and despair a few years ago and then came to my senses and started to make plans for different things. Hubby also became disabled through 5 moths hospitalisation with severe illness. Bought a wheelchair access vehicle and started being together again, even went to Llandudno on holiday:D. That was 2 and half years ago and now regrettably he's had to go into a nursing home. Oh the despair and guilt came back with a vengeance but 5 months on and I see how much better he is as he's getting quality care, plenty of food and more importantly more interaction with a variety of people. And I can go and see him whenever I want and enjoy the old relationship we had in the past.

Best wishes, Benjie
I'm glad you've had some positive experiences!
 

maggie123

Registered User
Jan 20, 2012
16
Acceptance

Does anyone have any advice on how to accept loss of one's dreams and feeling that you are in a long dark tunnel from which there is no escape. I care for my husband with dementia and obviously love him otherwise I wouldn't be doing it, but I do regret the loss of 'me'. I do get out socially with him and have 2 days respite for myself, but bitterly regret that I can't do anything spontaneously, be in with my previous social set because of not being able to go out at night, or visit my son in NZ etc. etc. I wish I could accept my ''lot' in life, because although on a daily basis I am getting better at managing the situation , being in year 7 down the line, mentally I am not managing very well. Any thoughts, anyone?
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,669
England
Hi Maggie and welcome from me too. This site has been my life saver. Everyone here understands how we feel, has experienced what we are experiencing and have lots of advice and encouragement to help us deal better with our problems. Look forward to you joining in.

Jay


Sent from my iPad using Talking Point mobile app
 

Jaffy

Registered User
Oct 24, 2013
168
74
Ohio USA
Maggie, if i were you I'd make a list as long as you wish, even add to it later. Edit it now and then with #1 and so forth of what you want to do, how you can make it a reality, or if impossible alter it until it is some semblence of the real thing. Even if you have to post pone it give a future date, that you hope to have it worked out. But BE SURE to do something special everyday, little things can mean so much.

For instance, I was bound and determined to vacuum the two floors that have carpeting. My health has been so bad for 2-3 months it just didn't happen. So, I did them, first thing. When I went to bed that night, I looked in mirror and realized that I had never bathed, dressed, or combed my hair all day!

And our oldest grandson and his to-be wife had dropped in late! I had no idea, I behaved like I would have been dressed for the queen! Hope she doesn't break the engagement because of his wierd, dirty grandma! Ha!
Jaffy
 

Jaffy

Registered User
Oct 24, 2013
168
74
Ohio USA
Just realized that this is on the "i have a partner with dementia' which is true but you may not know that i have dementia, too. Well, you probably guessed it after my previous post. Love you guys, it is hard dealing with me with it and doubly with "him" too! Jaffy
 

jkt

Registered User
Aug 23, 2011
9
WEST MIDLANDS
Does anyone have any advice on how to accept loss of one's dreams and feeling that you are in a long dark tunnel from which there is no escape. I care for my husband with dementia and obviously love him otherwise I wouldn't be doing it, but I do regret the loss of 'me'. I do get out socially with him and have 2 days respite for myself, but bitterly regret that I can't do anything spontaneously, be in with my previous social set because of not being able to go out at night, or visit my son in NZ etc. etc. I wish I could accept my ''lot' in life, because although on a daily basis I am getting better at managing the situation , being in year 7 down the line, mentally I am not managing very well. Any thoughts, anyone?
Hi Maggie know just how you feel my dreams of the future have gone my husband has had vascular dementia for 4yrs he is now only 66 so am I it's hard to carry on sometimes when friends are having a lovely retirement and you feel why us . I don't know what the answer is Maggie I like you get depressed sometimes but you just have to carry on very hard with no future to look foreword to just thought I'd let you know your not alone take care post me anytime
 

Barlemo

Registered User
Apr 23, 2012
74
Hi Maggie

Most of the time I feel just as you do. My husband was diagnosed with Alzheimers (atypical whatever that means!) almost 2 years ago at age 67. I was still working at the time and decided to give it up, but at 62 that was ok, it was all becoming too much anyway. I do miss it though. I try hard to be patient, loving, caring, considerate, etc, but some days it just doesn't work. Our friends and family are all very supportive and sympathetic, but of course they just don't/can't understand the frustrations, sadness and feelings of loss that we are experiencing. How can they? I didn't before it happened to me. I am told time and again that I must go out more, have my own life, find new hobbies, etc. If only it was that easy! I have to bite by tongue sometimes not to sound churlish when I know people are only trying to help.

I'm sorry I can't be of any assistance, but hope it helps a bit to know that others feel exactly as you do. I don't post very often, but do dip into TP quite regularly. It is at times a huge comfort.
 

maggie123

Registered User
Jan 20, 2012
16
Not managing

Hi Everyone, I'm here again, but so much further down the line. Please, I'd like someone's thoughts. My husband with frontal lobe dementia and Parkinson's traits is deteriorating rapidly. I'm at the stage where I really don't want to put him into residential care, but wonder how I am going to manage the time we probably have left together(consultant suggested less than 1 year). Husband has to sleep downstairs as he cannot climb stairs and we have an intercom to maintain contact. He constantly wakes at about 4.30am and I have to toilet him or change sheets if he has been incontinent. If he takes sleeping tablet he may sleep longer but often is more muddled or can hardly walk the next day. He often has nightmares or wakes not knowing where he is and constantly calls for me. On top of that he can hardly walk so transfers to chair or car are difficult. Short term memory is almost none existant, cannot always remember if he has eaten, or even where we have been sometimes. I find that evenings are dreadful and living with someone who has no conversation(he can barely speak at times), is dreadful. He does have day care 3 days a week, but I sometimes feel so tired and unwell that I can't do anything to enjoy myself, but go back to bed. I can't remember the last time that I didn't feel anxious or felt that I had anything to look forward to. I really regret that my good social life has gone. Friends are v kind but I feel that I am now left out of the 'social circle', mainly because I can't reciprocate easily. Additionally my son lives in NZ and I am not able to visit him. People suggest respite but I find it hard even to consider that, because although my husband drives me mad, I know that he is so frightened, confused and depressed himself, being placed with complete strangers would seriously worry him. Where do I go from here?