I'm 25 an my Dad has just been diagnosed

[caff]

Dear all,

My Dad was diagnosed two weeks ago; he's 61. Both my Mum and I have noticed a decline over the past two years, but despite this I'm still in absolute denial and feel inconsolable.

Each time I think about what it means for my Dad to have 'Alzheimer's' I can't stop crying and I feel so angry too. My eyes are welling up now.

I feel helpless. My Mum is being so stoic, but I can see the strain she is under. She too is in denial. My Dad was told he cannot drive anymore and he is unable to go back to work, but this feels so unfair when he his occasional prolonged moments of clarity.

I speak to my parents several times throughout the day; I am the youngest of three daughters but my Dad's only child. I feel a huge sense of duty to be there and make this situation easier, but I don't know what to do. This makes me feel even more angry.

My parents don't live far away and I visited them last the weekend. The saddest thing is a completely glazed look when I speak to my Dad, I understand that this is the medication he is taking. Is that right?

He has become progressively more angry and I don't know how to help my Mum, especially as she has not accepted what is going on. My Dad was the only one of my parents able to drive and I fear my Mum will lose her independence.

I know that things are going to get harder, but I don't know how to accept that.

Thanks for reading. x

 

[rjm]

Hi caff,

Welcome to TP. I am sorry to hear about your dad's diagnosis, I know how devastating that can be to the whole family. You will find lots of support here.

My wife was 48 when she was diagnosed and our 4 girls were all in their 20's. It is a very hard thing to adjust to. You may find the factsheets here to be helpful. It is easy to upset yourself reading some of these so please do be aware that not everyone will experience all the symptoms you read about, and not everyone will experience them in the same order.

This link contains suggestions for communicating with someone with dementia, many have found it useful.

You have a lot of worry ahead of you, try to take it one day at a time, and enjoy your time together as a family as much as possible.

Best wishes,

 

[caff]

Richard,

Thanks for your kind words; they really mean a lot.

It's especially nice because the people I have told don't know how to respond. I feel like the reassurance I need, isn't available. I wonder is it because reassurance isn't the short term solution? My friends, and even my Dad's siblings, don't know how to react. I can't blame people for not knowing what to do or say, I don't even know, but I guess this is an integral part of the adjusting process.

How is your wife now? What about your daughters?

I hope they are okay.

x

 

[SoyHJ]

Hello Caff. My husband and I are round about the ages of your parents and two separate GPs suspect that my husband may have the beginnings of dementia. At the moment we are waiting for tests. My husband also occasionally acts completely out of character and becomes very angry about any minor problem - and he was always the calm one! He also has memory blanks and agitated panicky phases.Yes, it is very hard and upsetting to deal with and, unlike you, we haven't yet had the confirming diagnosis. He isn't therefore on any drugs at the moment so I can't help you regarding the medication your father has started taking and his glazed look. Other people on TP will be able to tell you more about this. Like your mother, I don't drive and although my husband still drives at the moment only time will tell if he can continue. For me, if the time comes when he can no longer drive, I don't think I will feel a loss of independence because of that. I don't know.Your mother may be in denial now but I do hope she will eventually manage to find some form of acceptance, coping, call it what you will. Does she talk openly to you? We have two sons, older than you, and I find that just knowing their support is there helps me so much. I know that they are upset by the situation,as you are, but speaking from a Mum's point of view you are doing so much to help your mum by just being there for her when she needs you. Of course you are frightened and feel helpless. Your Mum even more so which is probably why she finds it hard to accept this new situation. Be there for her and for your Dad and when you need to talk and ask for help you will find all sorts of help here on TP.
Maybe what I have written doesn't help much but I thought you might like to know how another set of people in a similar situation to your parents are managing (or not, as the case may be!). I'm sure you will soon receive lots of better help on TP than I can give but in the meantime, write to TP whenever you need and just be there for both your parents as you are already doing. Sending a big hug. Xx

 

[snedds57]

Hi Caff

it's always hard to come to terms with a diagnosis. Find your local Alzheimer's Society office and see if they have a dementia support worker you can have a chat with. Some areas have support groups (like dementia cafes) for couples to go to and some have befriending or carer support services. Life certainly shouldn't stop - its the worst thing you can do as its important for the person with the diagnosis to be involved socially and stay active. You will get lots of support on here as everyone knows how you are feeling. I run a dementia cafe and my members have made new friends and its lovely to see everyone out enjoying themselves. We go bowling now too!

Just remember your dad is still the same person and while he possibly he isn't visible all the time, treat him as if he were.

lots of hugs.
Linda

 

[Countryboy]

Hi if your hear on TP looking for support please remember that there is an extremely wide range of type of dementia and wide age range so it would be wise to look carefully at your own situations before committing to any bureaucrats or agencies because once the word dementia is on your medical records irrespective the stage you will no longer be treated as an individual your we treated as a person with a mental illness be careful

 

[Granny val]

Dear Caff

When my husband was diagnosed he was 65 and had just retired. I was 56 and felt just as you and your mum are feeling, devastated. Somebody has mentioned about the local Alzheimer's Association Branch being somewhere to find help from. In my experience they were a godsend, I wished I had taken them up on their offers of help sooner than I did but foolishly I buried my head in the sand and thought I could cope and that my husband wasn't too bad. When I did decide to seek their help, after about nine months on, they suggested that maybe my husband might like to join a coffee morning group of people who were at a similar stage in the disease. He wasn't too keen but they sent a taxi for him and he actually enjoyed the morning and was happy to make this a regular weekly event. They also guided me through an application for Attendance Allowance and also Carer's Allowance which could be helpful perhaps to pay for taxis as your mum doesn't drive.
It's been four years since my husband was diagnosed and for the first 18 months he seemed fine unfortunately he developed epilepsy which hastened the progress of the disease and then he was diagnosed as having frontal lobe dementia rather than Alzheimer's. However a friend of ours who was also diagnosed, a few months after my husband,with Alzheimer's is still very much on an even keel, very little has changed for him. Hopefully your dad's progress will be steady. It is hard Caff but try to guide your mum to ask for help, particularly from the Alzheimers Local Branch , they are the organisation who really made a difference for me and my husband.
Thinking about you all
val

 

[rjm]

Richard,

Thanks for your kind words; they really mean a lot.

It's especially nice because the people I have told don't know how to respond. I feel like the reassurance I need, isn't available. I wonder is it because reassurance isn't the short term solution? My friends, and even my Dad's siblings, don't know how to react. I can't blame people for not knowing what to do or say, I don't even know, but I guess this is an integral part of the adjusting process.

How is your wife now? What about your daughters?

I hope they are okay.

x

Hi caff,

I'm not surprised that people don't know how to respond, most people are not aware that that anyone but the old have this disease, and even then most people see it as a somewhat humourous memory problem. Friends and family will find their own ways of accepting this, but for some it is a slow process. I wish I could offer you the reassurance that you need, but i can't. The truth is; it is a progressive disease and over time will only get worse. That is why i feel it is so important to live for today and enjoy your time with him whenever you can. Knowing what the future will bring is good, some advance planning is needed. But dwelling on how bad things may become can, for some, override the good times that are still to be had, and there will be many of them yet!

We are now 9 years on from Sharon's diagnosis, which I think is pretty good considering the docs originally said to only count on having 5 or 6 years! Our girls are doing OK, they have certainly had their bad moments over the past years but with four of them so close in age they are their own support network and that works well for them. We're all having a bit of a hard time right now as Sharon has just had a big decrease in ability and is now in bed as she is no longer able to support herself - one more step in the journey.

 

[caff]

Thank you all so much. My Mum and I are going to get in touch with local support groups.

Thanks again, listening to you all has already made me feel better.

 

[grumpycat]

Hi....

We are on the same boat. I'm 27, and I noticed over the Easter holiday that there is something wrong with my dad who is only 55. He's now gone to see a neurologist a few times and is still undergoing more tests, but it's likely alz (symptoms match exactly, and there is also family history of alz). Next week he is getting a big cognitive test to help diagnose him, and it includes testing to see if he's still capable of working and driving.

First of all, so sorry to hear about this... I dare say I probably know a lot about how you feel. :-( This is such a shock and it feels like it's made me question everything in my life. Every future plan is now all question marks.

I think that for family and the person themselves to be in denial... is totally normal and acceptable. Could be your mom's stoicism is because it helps her cope with things better than if she let her feelings out a lot. I used to think it's bad to be that way, to sort of hide your feelings or deny them altogether... but I think it can have merit at the worst of times for some. I think people protect their psyche this way from the shock - by not facing the whole thing until later, and maybe in bite sizes. It takes time for everyone to get used to the news - more time for some.

I think it's important to remember that even though it's a terminal illness, our dads are still here. Still here to share good times with, to love and to enjoy.

One thing I've been thinking is that and we all have to die sometime. Our dads will just probably go a little earlier than some other people's dads. But that in the meantime, dad still has life in him yet so I better try not to get swalloed by the thoughts about when he's gone (whether in mind or body) and just try to "be present in the current moment" (to use a syrupy cliche term).

You perhaps already know a lot about what is in store near the end of his life as far as the stresses and difficulties, but you (we) will all have time to get used to all of this. He's not going away right now, not all of a sudden. We will all have time to come to terms with the "new normal" that includes dad's illness, and to come to terms with the inevitable.

About the glazed look, I don't know much about the medications yet. However, one of the things I noticed while he was here (visiting me over easter) was him sort of being 'blank' somehow. And more withdrawn, like he's just not interested in me or what anyone is talking about, some of the time. It's precisely what, together with a few illogical things he did and a few memory lapses, gave it away to me that something is wrong. So perhaps it could also be the illness itself? I know it makes some alz patients themselves feel like they have foggy thinking.

Dear all,

My Dad was diagnosed two weeks ago; he's 61. Both my Mum and I have noticed a decline over the past two years, but despite this I'm still in absolute denial and feel inconsolable.

Each time I think about what it means for my Dad to have 'Alzheimer's' I can't stop crying and I feel so angry too. My eyes are welling up now.

I feel helpless. My Mum is being so stoic, but I can see the strain she is under. She too is in denial. My Dad was told he cannot drive anymore and he is unable to go back to work, but this feels so unfair when he his occasional prolonged moments of clarity.

I speak to my parents several times throughout the day; I am the youngest of three daughters but my Dad's only child. I feel a huge sense of duty to be there and make this situation easier, but I don't know what to do. This makes me feel even more angry.

My parents don't live far away and I visited them last the weekend. The saddest thing is a completely glazed look when I speak to my Dad, I understand that this is the medication he is taking. Is that right?

He has become progressively more angry and I don't know how to help my Mum, especially as she has not accepted what is going on. My Dad was the only one of my parents able to drive and I fear my Mum will lose her independence.

I know that things are going to get harder, but I don't know how to accept that.

Thanks for reading. x

 

[grumpycat]

I find it really brutally difficult when people get all weird and quiet and awkward about the news. When my dad's wife told my dad's mom, grandma basically didnt say a word about it to him directly and had just avoided the whole thing. I find it so frustrating when other people act as if this is something to be ashamed of, and something to hide. Argh... I mean it's like, I don't want my dad thinking this is SO horrible, such an end of the world, that people have to dance around the subject. I feel that it couldnt possibly be good for him.

I am dreading and expecting this "awkwardness" to happen when more relatives find out but I will do my darnest to prevent this from gaining the status of "taboo" in the family over the longer term.

I actually talked to my grandma yesterday and told her just this. I told her that I wish that this is a subject that we can all mention and talk about. That I don't think it's any kind of shame, and so us family shouldn't act like it is one, either. She agreed. I think it was a sort of "cat on the table" moment - the issue gets mentioned, and after that it can get easier to talk about it...

I dunno... random thoughts here.

Richard,

Thanks for your kind words; they really mean a lot.

It's especially nice because the people I have told don't know how to respond. I feel like the reassurance I need, isn't available. I wonder is it because reassurance isn't the short term solution? My friends, and even my Dad's siblings, don't know how to react. I can't blame people for not knowing what to do or say, I don't even know, but I guess this is an integral part of the adjusting process.

How is your wife now? What about your daughters?

I hope they are okay.

x

 

[BeckyJan]

Hello Caff and welcome from me too.

You have already received some good advice and I hope you are able to benefit from TP. Our daughters were around 22 and 28 yrs old when their Dad was diagnosed and they both handled it in different ways. I found them wonderful with me (well both of us) during his deteriorating years, so they, plus TP and some very close friends helped me through it all.

I also found the local Alzheimer's Society very helpful. You can find your branch here and I do suggest you give them a ring and encourage your Mum to involve herself with them too.

Keep in touch and let us know how things are with you.
Best wishes

 

[Lew]

Hi Caff (and everyone).

Sorry to hear about your situation. I was about 21 when my Dad was diagnosed. He was 59 and otherwise fit as a fiddle. At the time of diagnosis both my sister and I were away at University but fortunately for me, I was only 30 minutes drive away.
I think our situations may be quite similar in a lot of ways so thought I'd just try and put into words some of my experiences.

Firstly, one of things I found was that I was of far more use to my mother as a carer than my father as a sufferer. There are some wonderful things available to the patient (support groups, activity centres etc) but in my experience not so much for the carer. I made sure that I was there for my mother as often as I could be. Even if it was just a friendly chat on the end of the phone. The trouble with Alzheimers is that it can, if you let it, take over all of your lives. It's important not to let it. My sister was excellent with my Dad. They were always very close and right up until his last few months they would go on long walks and take photographs. For me, it was taking dad to the park to kick a football back and forth. The important thing was, we were all capable of looking after him alone, so as to give Mum a little time off when we could.

Following on from that, I'd suggest trying to keep close friends, family and neighbours aware of the situation. As the illness developed my Dad loved nothing more than a visit from and old familiar face. It was amazing how well he remembered people. However, people can feel very apprehensive about visiting especially if they haven't visited for a while, they can find the decline hard to take. We were fortunate enough to have a really close network of friends and family who visited and supported Dad (and Mum) a lot and it made a significant difference.

And this'll be the hardest thing, at at this point almost sounds ridiculous, but try to stay positive. I'm not gonna lie & tell you it'll all be easy, it won't. But every now and then, there'll be a day or maybe even a moment where things will be good. This is going to sound silly but just an example. One Christmas, after my Dad's diagnosis, I brought him Band of Brothers for Christmas. Obviously, over the years I'd bought him lots of gifts but his face never lit up like it did with this. He immediately understood that the present was something for us to watch together and we ploughed through it in no time at all. Yes, sometimes I still feel robbed of the moments we missed out on, but for you now, you have the opportunity to make every moment count.

I'm sorry I can't give you any more practical advice, but I'm aware that every situation is different.

Try and stay strong.

 

[Footprint22]

Live today

I kinda understand what you're going through. I'm 28 and my mother is in the final stages of alzheimers. I didn't really go through denial in the beginning. My dad did though and we got in heated fights often. I wish I could give you advice but honestly every situation is different and so is every person in how they need to handle it. One thing I can tell you though is though you need to be prepared for the future try not to get so wrapped up in it. You'll read and research alot and you'll find similarities but you'll also learn that each case is unique in its own way. Try and focus on what you have today bc even though it may seem bad at the time you will get to a point where you'll give anything to have these moments again and it's too late. Take lots of photos am videos. Even when you think you don't want to remember these moments bc trust me later when it progresses and you can't go back you'll wish you had.

 

[lizzyb]

Hi Caff,

I was 30 when my Dad was diagnosed with dementia 16 months ago and I recognise the feelings you are having now as being very similar to my own. I was so frustrated and felt very helpless and used to get angry and cry a lot. I have two older siblings and while it was nice to share the experiences with them it was hard that friends didn't understand. I still struggle with people not knowing how to respond and have lost count of the number of times people have asked me if he still recognises me as though that is the barometer of how he's doing. A friend of mine lost her Dad to cancer a while ago and it was actually a blessing to be able to discuss this topic with her. While it's not exactly the same situation, the emotions we both experienced are very similar and it was nice to talk to someone who understood. I sometimes think how I would've reacted if a friend of mine had been the one telling me of a parent with dementia before Dad was diagnosed and I realise I wouldn't have had a clue what to say either. My friends have been really supportive after the initial awkwardness and it's become a lot easier to talk to them about. Plus it's helpful to have someone outside the family who I can offload to sometimes.

What I found most difficult was the change in relationship with both my parents - suddenly I felt I was doing a lot of the parenting and my responsibility towards my family was now so much greater. I suppose I finally grew up!

My Dad unfortunately went downhill very quickly after his diagnosis and now lives in a nursing home. However there are definitely positives from this experience. I now spend a lot more time with my Dad and feel a lot closer to him than I have done before due to his reminiscing about the past and general chats. Sometimes I just sit and hold his hand while he doses but he knows I'm there and he just loves the company. On the other side I now know way more about his personal hygiene than I ever wanted to know! Dementia definitely has a way of lowering social barriers!

I guess what I'm trying to say is let yourself mourn. While your Dad is still him, your relationship with him is bound to be affected. Find the small things to do to help your parents, whether that's researching his condition, giving your Mum time off from caring, just spending time with them or something unique that only you can do. You can't solve the problem and once you accept that it becomes a lot easier to deal with.

Good luck to you and your family. It's a really hard situation and my heart goes out to you all.

xx

 

[FiveWords]

My Dad was diagnosed when I was 29 and my sister was 27, and he is now the same age as your Dad and lives in a care home. It's horrible, but you learn to cope with it. It will not be easy, but you will definitely smile again. I found that if I appreciated the fact that my Dad was still here, although not quite the same as he used to be, it brought a lot of comfort. Every moment I spend with him is precious time that other people often don't get. (I have a friend my age whose Dad had a heart attack and died out of the blue a few years ago and I am conscious when I moan to him about my Dad that he would bite my hand off to still be able to sit with his Dad and hold his hand like I can). Appreciate what you still have, while you still have it, would be my advice. Lots of love xxxxx

 

[Hannah1]

Hi Caff and everyone,

I was 22 when my dad was diagnosed. He'd been having symptoms since I was 17 or so and now I'm 30 and he's nearly 80, he's been in care 5 years and is in the final stage. I'm the youngest of three and my mum's only child. I've lived with mum for the last 5 years.

I don't have much to say that hasn't already been said in this thread, just to reiterate that you're not on your own. It's can be a very, very long and complicated road. Being in your 20s does not help (I found) because none of my friends understood and I was only just beginning to get my life together. Maybe it won't be like that for you (I certainly hope it won't) but I would encourage you to nurture supportive friendships where you can and know how to ask for help when you need it. I wish I had.

The route the disease takes through a person is completely unique to them, so while there can be some value in reading books and websites, try not to upset yourself by researching every last detail and just deal with what comes up as it does. Support groups, therapy, TP can help you find solutions to the challenges you'll face in caring for your father.

These challenges will change and morph over time, the sand is always shifting. Try to be flexible when dealing with your father and rely on your intuition - you will figure out how to help him, calm him down, what to do or say. I found that, for a certain time, dad would only listen to me because I was the 'little girl' he always said yes to, so I could calm him down when nobody else could. It can be trial and error though, don't blame yourself if you have a bad day.

The thing that won't change is the fact that your mum will need support. My mum was in denial just functioning on auto pilot for a long time and it made her ill in the end, so ill that dad was taken into care. That's when I moved home, she'd been holding it together for so long that she just broke. Whatever your sisters' relationship with your father, they will hopefully be a support to her too. I can't stress how important it is to care for the carer. My brothers (my father's sons, who live abroad) never quite got that part.

If you can (and that includes wanting to as well as being able to), start to adjust your life now so that you can be there for your mum. Any breaks you can give her will help. I did things like driving him to day care and home again (the Alzheimer's Society have day care facilities where he got 1 on 1 care for 10 euro a day), taking him to the supermarket, for a walk in the woods, anything that would get him out of the house.

Turns out I did have a bit to say

If you ever need to talk, PM me and I'll give you my skype details. I'd never met anyone my own age going through anything like this until one day I got talking to a stranger on a bus and within 10 minutes the two of us were in tears, we just 'got' each other, and have remained firm friends in the four years since - he's my "I need to talk to someone who knows what it's like" friend. You might be needing one of those too.

Best of luck,

Hannah

 

[Rebecca87]

hi

Hi my name is Rebecca and Im 25 years old, I also have a brother called Jack who is 18 years of age, We live in Trowbridge, Wiltshire, my parents divorceed in 2006, but my mum is still and always will be there for dad.

I have joined this site today as my father is in late stages of Alzheimer's and he is 54, he was diagnosed in August 2008, in 2009 he was living in a bungalow with 24 hour care, locally, my brother and I with my two children visited him regularly.

Unfortunately at the end of March my father had a fit, and was taken into hospital in Salisbury and that is where he is now, he does not recognise myself or my brother anymore, he has gone, and its heart breaking, he was a police office for the Avon and Somerset police, and he should have retired last year, and now should be enjoying his retirement, but hes not, hes a stranger.

I'm finding it very hard to understanding why, our dad. I would like to talk to others who are experiencing the same.

Thankyou Rebecca