This is going to be long!!
My father is 58 years and has just been diagnosed with Alzheimer's. He has been changing in personality over the last 3-4 years and it has got increasingly worse over that time.
Oh Sophie, Sophie, Sophie! Your situation with your Dad so reminds me of mine...except I've been doing this for 6yrs now and Dad is 62 this year. I was a bit older than you when it all started though, at 25.
I wondered if there is any one else in similar circumstances as myself as it is rare to develop this so young.
So yes there are others in similar circumstances, or who have experienced a lot of what you're going through like me, but yes your situation is rare, there are not many people on here your age (even I am old in comparison at 31...and I am so used to feeling like a spring chicken on here!
). Nonetheless, there are quite a lot of husbands and wives of younger people (i.e. your Dad's age) on here and they help a lot...they can also help you to understand it all from your mum's perspective too. One thing you must remember though is that everyone's situation is different and that because of this sometimes people just won't 'get' why you are feeling a certain emotion, unless you explain it...and sometimes you just won't be able to explain it.
People are advising me to get on with my life as I can not live my life looking after him and make choices around that but I cant see any other option.
It really is good advice and if you can do it I would yell at you to do it!! But as a daughter who loves her Dad, how can you just walk away? It can be done, some can do it, but some of us can't. As my husband says to me when I say 'What if, I just stopped visiting Dad?', his reply is 'For you dear, that solution would be just as painful as visiting him every day.' (Dad's in a home these days). My sister has distanced herself quite a bit from it all, and my brother only has contact with dad once or twice a year...and I don't think badly of them for it, but I can't do it. I think about it everyday...but I can't do it. I think about how much my Dad loved me, all that he did for me, and then I think about how I would feel if I was in his shoes. I know at times he would prefer me to not be there for him because he worries about me, but I also see the way his eyes light up when he sees me and I can't take that away from him. Last but not least, no matter how terrible the situation, I love being with my Dad. Sophie if you make this choice...if it really is a choice....this is going to be the hardest years of your life and you are in the years where you should be having fun. My lot for my choice is a life devoid of normal social activities for people my age, because even though I can go out, I just feel so distanced from other people my age I don't really enjoy it...lucky for me I met my husband 6 yrs ago, just before things got bad, but I often shudder to think how alone I would have been if I hadn't met him...I may very well have ended up a basket case myself! As it is for the past 3 months I have been in agony with head/tooth/face ache due to tension causing me to clench my jaw in my sleep. So I guess what I am saying is that if there is any choice in this for you, run away now, and don't feel bad for it, it is a huge sacrifice.
He has mentioned to me only about ending his life before but im not sure whether he has spoken about this to my mum or sister.
You cause a grim smile from me with this comment, smile because you say it so matter of factly, already you are getting tough, grim because I know that no matter how matter of factly I dealt with the same situation the little girl inside me was screaming 'No Daddy no!' when Dad was considering a similar way out early on in his disease. Today his alternative still haunts me, not only because it is horrible to see your once so capable parent so desperate to escape their current situation but also because I often wonder now with hindsight if perhaps it may have been the best thing to do afterall. I often think that if I get this disease I will have to think long and hard about that alternative. The thing is though I am looking now with hindsight, but I remember the person I was, when Dad was at that stage and for him to have done that well I think it would have been just as devestating to me emotionally as my current situation is...it just seems like it would have been easier now, because now I have had years to get tougher. At the time though when Dad was at his lowest, it was around his birthday and so I wrote in his birthday card that he had so much to be proud of, that he had made me the person I was, that he didn't need to talk, didn't need to be able to do anything anymore, that just his being there gave me the strength to be the woman he wanted me to grow up to be. I had to read it to him though because he couldn't read it anymore...it was a very unsubtle plea for him not to leave me, and it seemed to work because he never talked that way again...but sometimes that makes me feel bad too because sometimes I wonder if he suffering through all this for my sake and I just made life so hard for him when he could have taken the 'easy way out'. <bawling my eyes out just now>
At the moment I feel that I just want to go sit in the middle of a field or somewhere else secluded and cry. I see this as weak as I have to keep myself strong.
For some people crying is bad, I have been admonished on here by some because I suggested crying was good, because apparently for some, once they cry they fall apart...HOWEVER, for me I think crying is the key to getting stronger, and perhaps part of the secret to that is that most of the time i don't cry at the important moments (like getting a diagnosis) but do my crying like you said, like a sneeze. I just bawled my eyes out writing what I wrote above, even though I have lived with that situation for years, I have bawled my eyes out for almost an hour once after watching a movie about a dad who dies, and then walked outside hung the clothes out to dry and continued to bawl the whole time! Then there was the time i was driving home from Uni, feeling great because I just finished my last exam and I just started bawling. (Dave can tell you about his azalea incident too
)These days I am proud of my crying (I generally don't do it around other people however) I know that it is a release and that it allows me to carry on stronger and more resolute afterwards. So I think if you have some control over your crying, i.e. don't let it happen when you need to be functioning, you really should take advantage of its healing properties. Something my crying also does it makes me aware of how terrible things are....you tend to spend your days telling yourself to get over it, what's your problem, you're so weak...but when my 'sneeze' crying happens the amount I cry awes me into realising that '***** things really must be bad, how about you give yourself a break Nat'. Those reports are right, you and I are in mourning and I have been in mourning for 6 yrs now, I was just thinking last night that I hope to God that when Dad does eventually die that I will not spend an equal amount of time in mourning after it all...I'm hoping that by not denying my emotions now, life after will be easier to get through than for others who have not cried yet, mourned yet.
My mother and sister never also discuss emotion and put on a brave front. I often believe they are not hurting as badly as me due to this. I still to this day have no idea if they cry or feel sad.
My mother and sister are very similar...I still to this day am not sure if it is a brave front or if perhaps they just don't hurt as badly as me. I know my mum and sister seem to hold onto all the things they didn't like about Dad...so maybe they just didn't love him as much...and then I go back to thinking that perhaps they are just in denial.
I know I spent a lot of the first years of Dad's illness thinking I was pathetic, over-emotional, making mountains out of molehills and so on....because everyone around me seemed so unconcerned, my sister and mother would swing between telling me that I hadn't come to terms with dad's illness and telling me to get over it when I was in tears, and society in general doesn't give you any excuses so in the main, friends and employers just want you to get over it too...the problem is, you can't get over something that just goes on and on, and gets worse and worse...you just have to learn to roll with the punches instead as best you can. And most of the time you have to do this by yourself because no other ****** wants to take the time to understand, and then you yourself don't want to be an object of pity so don't want to ask for understanding.
Don't ever beat yourself up for feeling like you are 'not coping' you have every right to feel that way.
As I tell people that are close to me I lost parts of my dad along time ago. He has changed so much. I miss him although he is still with us. Gone are the days of a bright, happy, intelligent and strong man. I guess I have come to terms with this without really noticing.
Sophie, from one who is experienced I know how you feel when you say this, but I also have to say soak it up right now, there is so much of your old dad still left in him...its just your shock at the loss of so much that is blinding you to what remains. Celebrate every day you have with this man now. Its hard to explain and I don't want to scare, but I never realised how good Dad was back when he was at your Dad's stage because I had no concept of how bad things eventually get (I worry now even that there is still so much more of him to lose). In no way however am I belittling what you are feeling, its like your Dad dies every day as another bit of him goes, and that pain is horrible. As I said to my mum recently part of the reason this disease is so painful is that every day the person you love dies, you wake up the next day and there is a new version of the person, you grow to love this new person and then they die too, it a continual cycle of attachment, love, loss and grief. But please please do delight in this wonderful man that is with you today, if you can't see it for yourself, please do it for me, give him a hug, a squeeze, a wink, tell him how much you love him, enjoy this moment with him now.
Last but not least, there are a lot more medications out there these days that weren't available to my Dad that can hold the disease at bay for longer and give you more time. Make sure when your Dad goes back to the neurologist someone finds out about what medications might be suitable for him. Aricept is the most well known. Call me crazy, but I still hold onto the hope that a cure will be found, even if not for Dad, if someone like your Dad was the first to be cured I would be soo happy that this misery is ended.
