Dont know why I'm doing this!

[Backy1]

I've never done a note like this to people I don't know so am not sure whether this is what I need or not. I know I need something because my wife has just been diagnosed with Alzheimer's at age 46, and the past few months have been a nightmare for our family. We have three teenage kids who are comming to terms with the situation, but I'm really struggling inside. My wife is everything. I've read all the doom ridden books and done the web investigation stuff, and now I just lay awake at night looking at her, and thinking of what probably lays ahead of us. Quality time together could be so short, and while she has been given medication (which has seen an improvement), every day her actions and memory losses remind us of this illness.

I don't know whether to pack up work or try to muddle through it. I have a job which demands long hours, frequently away from home, which means my wife's support falls to our children. I'm 45 and am now worrying about finances to support my wife through an uncertain future. I cannot even think of anyone else looking after her as this disease progresses. I'm also desperate to be with her while we are able to have good times together. No one can tell me how long that will last, but I know this is about as best as we will ever now be.

I know that I need to arrange for us to refresh wills, sort out powers of attorney and finances and the like, but this seems so hard to accept and do. God I'm so angry, upset, mixed up, confused and disparing, and am desperate to keep positive for her and our children. My wife has no reason to be diagnosed with this.

I'm attending a Carers workshop next week so maybe that will help me to navigate through all of this stuff. Sorry to vent.

 

[connie]

Dear Backy, warm welcome to TP.

Your post moved me so much and touched many cords. I do not think there are any right or wrong ways to move forward, but to go with your heart first and foremost.

It is hard to come to terms with such a debilitating illness and so you have to live for each and every day.

I know that I need to arrange for us to refresh wills, sort out powers of attorney and finances and the like

I am glad that you realise the importance of settling these matters asap, but once this is done try to enjoy your life together. Just my thoughts, although I am sure you will receive plenty of support from other members.

Stay strong.

 

[Helen33]

Dear Backy1,

I would like to offer you a warm Welcome to Talking Point. I have found this place to be a lifeline and I hope that you, too, will greatly benefit from the information, support and friendship that the Talking Point forum offers

I am so sorry to hear of your wife's diagnosis at such a young age and you and your children must feel overwhelmed with the enormity of it all.

My suggestion, if I may, is to recommend that you take your time in decision making about work and outside carers helping out. It is a good time now for gathering information in order that you make the most informed decisions. Your local branch of the Alzheimers Society will probably run Carers Support Groups (carers only)and will also probably have an Alzheimers Cafe to which one can take the person being cared for. You may want to check these out. I found ours to be a tremendous help. Your children may wish to contact the Princess Royal Trust (Carers Federation). They do excellent work with young carers and offer tremendous support apparently.

Love and very best wishes

 

[piedwarbler]

Hi backy

A warm welcome to TP from me too. I wish you well. The only advice I can suggest is to contact your local Alzheimer's adviser, mine was willing to come to my house but I went to the local drop in centre to meet her - she was great and had lots of useful info at her fingertips which made my life a lot easier because I didn't have to keep trawling the net trying to find it myself.

Good luck with everything and best wishes to you, your wife and kids.

xx

 

[Skye]

Hi Backy, welcome to TP.

So sorry you're having to face all this at such a young age. Take your time about making any decisions about work. You may find that at some stage you will have to give it up, but I'd suggest delaying that decision as long as possible. As you know, the wills and POAs are the priority, as is sourcing all the help available for when it becomes necessary. The carers' workshop will help you with this.

I completely understand your anger, but please don't make any major decisions yet. When you have learned more about the support available, and met other carers, you'll be in a better position to make decisions.

And please come back to us at any time, there is great support available for you.

All the best,

 

[lin1]

Hello from me too.

Am sorry to hear about your wife, and being so young.

My advise is to join the Alzheimer's society, you will get lots of info and if you can go to their carers groups a lot of support from people who know what it can be like, same as on here.

I wouldnt advise making any big decisions till your ready and know more,well as much as anyone can know about this disease.

do get the legal side sorted asap ie LPA I recommend you also get the health welfare LPA to,as it will give you some control over that side of things if it should be needed later on.

Its difficult time so soon after diagnosis, your head and heart will be all over the place, and thats something we all know about here,and perhaps can help with

 

[BeckyJan]

Hello and welcome:
You have already received good advice and I am sure more support will be here on any aspect of your journey with dementia.

As well as the local Alz. Society, its worth checking out Crossroads and Admiral Nurses, depending what is available in your area.

I remember anger but that soon became lost in the process of caring and living with dementia. I found that telling our friends and family early was a tremendous advantage; as things became more difficult many unlikely people came forward to genuinely care for us.

 

[Backy1]

Such caring messages:

I'm moved by the messages to my note - thank you so much for making time to respond. Our Outreach Sister suggested that Talking Point might be helpful to us, but I have been slow in taking up her reference because I am not one who usually off-loads things on my mind. I have shown my children your messages and we are sat together responding.

My wife is so strong and is an inspiration to us at home. At first she did not see the signs but we noticed that something was wrong with her recollection of things that she used to know in an instant. Earlier in the year it became quite worrying and eventually she agreed to visit our GP with me. That took us to a brain scan which showed "striking shrinkage", and then detailed tests. Her short term memory fell within the lower fifth percentile - the bottom 1% of the poulation. This a women with two degrees, an active healthy lifestyle in the country, and no family history of this illness. We have been married for 22 years having been childhood sweethearts, and now this falls upon us, and with no ability to cure it. Why? I guess everyone asks the same blunt question. There is no answer.

I feel so foolishly selfish because I know that everyone on this site has been through similar. As I scan the many threads there are the most heartfelt messages and so much support offered.

What has really shocked me is that so little is known of this disease, and yet so many people share in its scourge from sufferers to Carers and family and friends. It is not just a senior persons illness, and it has opened my eyes to how little is being funded to prevent it. The statistics I have read are horrifying.

So now this illness has entered our own home and we know that we must face up to it. I try to find reasons for everything but have not found one to why this has come to my wife. Things are a bit negative at the moment but I know that we will make them positive and when we do I'll try to share some more upbeat messages in the future.

Meanwhile, thanks again. It has helped to reach out beyond our home and feel a little less lonely in facing whatever this throws at us. I will get on with sorting out the immediate legal matters so that I can put them aside, and then focus on doing what feels right to live the best of our lives together.

 

[Helen33]

Hello Backy1 and family,

I will get on with sorting out the immediate legal matters so that I can put them aside, and then focus on doing what feels right to live the best of our lives together.

This sounds really positive to me I originally registered with Talking Point to try to break the sense of isolation I felt and it worked for me. I hope it does for you too.

Love and best wishes to you all.

 

[Izzy]

Hi and welcome. I'm so sorry your wife has been diagnosed at such a very young age. Everyone has already given you good advice and I can't add much. Only to say not to feel selfish. You will find great support on this site. Sometimes it will be in general terms and sometimes it will be in response to something very specific you have asked about. There always seem to someone who will provide some support and knowledge for you. x

 

[Skye]

Hi Backy

What a loving family you have, that will stand you in good stead as you progress through the disease. It's wonderful that your teenagers understand and are ready to take the journey with you. It's so much easier when everyone pulls together.

Don't worry about being positive all the time, we've all had our moans, and we all know that there are good days and bad days with dementia, and we never know just when the bad days will strike.

Feel free to join in any other threads, that way you'll get to know people. You don't have to stick to the Younger People forum unless you want to.

All the very best to you all,

 

[sad nell]

Hello Backy and Family, so sorry that you have been touched by this cruel illness, but thankfully you seem to be a strong loving family which will help you no end. pleased you are to sort out the POA, we did so early on and i was so glad we had. I still care for my husband also early onset. and have at last accepted any help offered, wish i had done so much sooner. there is help out there but you may have to search for it, crossroads are excellent if you need someone to sit with your wife for a while. I still work, 1 because I need to to support us, but it also keeps me in touch with a world removed from AD . for a while. this site has helped our family so much and i hope you reap its benefits. it will make this journey that bit more managable knowing you are not alone with it. It does feel that way sometimes doesn't it. . we took holidays for many years after diagnosis and lived a good life for many years . look after each other love Pam,

 

[Sundance]

Moved by your post

Hi Backy
I read your post earlier today and just had to drop you a quick line to say my husband and I are going through all the emotions you have described in your post for I have also just been diagnosed with A.D (just 2 weeks ago) and I like your dear wife am 46. We are still trying to get our heads around it all, but I just needed to let you know you, your wife and family are in my thoughts.

 

[normelle]

hi baccy

Sorry to hear your news,i endorse all that has been said.
Also agree that l.p.a.as soon as pos.
In the meantime ,if you need help with some funds.the a.s.will reccomend that you claim attendance allowance,and you will get a 25 pc.discount on council tax,others will correct me if im wrong.
Keep well.t.p.is a very big help to me. Love normelle xx

 

[seaurchin]

Hello Backy,

I am so sorry to hear of your wife's illness and your families difficulties.

All I wanted to say was don't rush into making decisions about your employment. My husband showed symptoms of dementia when he was 43 but wasn't diagnosed until January this year at 48. I worked full time and following the loss of my husband's job because of his memory problems (diagnosis not known then)and I became the main bread winner. I initially wanted to stop working to take care of my husband but after a lot of thought decided to reduce my hours instead. I was fortunate in being allowed to do this and recommend that you look at all of your options carefully and speak to your employers if possible.

I was able to employ two wonderful carers (introduced by social worker) who are kind and professional using Direct Payments to pay their wages for when I am at work. The thought of having carers initially terrified me but it has been a positive experience so far so don't automatically rule it out as I almost did. I am sole carer for my husband at weekends, evenings and overnight. For us it has turned out to be a good choice as I think I am a better carer as a result of getting a break and have been able to retain a degree of normality for our 8 year daughter. It has also been important financially too as we still have a mortgage. Whatever your choice I really hope you are all able to have the best quality of life you can get. I am sending you my best wishes.

Kindest regards,

Helen x

 

[Charizomai]

Dear Backy, I have nothing more to add than saying that you should just allow yourself to be in the moment of your own emotions. It is OK to feel what you feel and vent it. Thank you for sharing your turmoil with people who you do not know, but who have the ability to listen. Take your time to navigate your way through this one day at a time.

 

[Backy1]

Such kindness:

Just to say we really are humbled by the messages of advice and support from such kind and selfless people who we don't even know or who know us. Today has been a step forward for us in dealing with our situation, and I think I have finally found a good reason for sitting at my pc and typing in text. Your messages have been a real subject of conversation at home this afternoon and evening, and we all feel remarkably stronger about taking this family challenge on. Thank you for sharing experiences and offering guidance. I think the main theme of the messages has hit home...keep positive and take each day. It does not feel the same coming from our GP.

I now know why I placed a note on TP.

 

[BeckyJan]

Thanks for your response. Its good you are feeling more positive already. I hope you continue to benefit from TP and the tremendous support here.

 

[Vivienne3]

I too have been going through the same dilema as I feel guilty leaving my husband (who is 51) and going to work. Whilst I am there I am worrying then about them. I would speak to your employer and see if you can alter your hours or, if you can afford it, take a month off unpaid. I recently took some time off but have to admit I just couldn't cope 24/7 and it made me realise that I had to have some interest myself and for the first time ever I was glad to get back to work. It is important not to put financial pressure on yourself as well as all the worries you have about your family. I am meeting with the Social today to talk about Direct Payments for care. As I understand it, we will be able to interview carers ourselves and find someone who suits my husbands needs and whom he likes. Only thing is I am not sure how much this will cost me. My thought were that this then would give us something to talk about and for him not to become 100% reliable on me, which I think is a good thing for the future. Good luck

 

[Bronwen]

Hello Backy..Just wanted to say how sorry I am to read of your news.I hope you and your family keep logging in to TP, as I have fund the advice invaluable and someone to talk to when I am down and feel so isolated with this awful disease that my husband is living with.

My best wishes to you and your lovely family

Bronwen x