Last night I had a conversation with a friend of mine who I have been friends with for about 30 years - she is considered one of our family and even lived with us for a period of time. She has always had a very special relationship with my Mum and the love is mutual.
Obviously this friend was devastated to hear of Mum's diagnosis and has been one of the very few people that I can talk about my feelings to, well that was until recently.....
This friend has been wonderful to Mum and regularly goes over to Mum & Dad's to chat with Mum and paint her nails for her (she can chat about paint drying to be fair) and isn't the slightest bit phased by Mums change in communication.
The thing is, my friend also has the ability to talk about things in slightly exaggerated terms, either making things much better or much worse than they really are and here is my dilemma - talking on the phone last night, she was telling me about her visit to see Mum and cutting a very long story short, told me about the lengthy conversations they'd had, the interest Mum had shown in all she was doing and how amazed at how much information Mum retains and can then follow up with in subsequent visits.
Well....with me Mum struggles with conversation, we certainly don't have long chats, she shows some interest in what I am doing (when she can remember) and certainly doesn't seem to retain things I've told her - all of which I totally get with her having the hideous PSP!!
Now I suspect that this is my friend's coping mechanism and she thinks she is being ultra positive with me but it then makes it so hard for me to tell her how I'm really feeling as when I do, she brushes it off and makes a "funny" comment about it. I think it's probably a conversation I need to have with her face to face as it's just not something I feel I can be "chatty" about - I'm just hoping she'll understand!
Rant over.....
Kate x
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Katet68
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Dear Katie, I really do know what you are talking about. It's such a hard place you are in, and I have been that friend, in a way. I had quite a fine and jolly relationship with my sister's mother-in-law as she developed alzheimer's, which was only possible because we had not been at all close when she was in her right mind. Some people in advanced stages of dementia can fake their way through superficial interactions, particularly when they are with someone who is willing to fill in the blanks. If you really don't know what's going on, it can be easy to be fooled. On the other hand, it can be much harder for such people to fake it with people with whom they are very close - the emotional load is greater, and that can be inhibitory in itself, and the shared memories provide more detail than can be easily glossed over so the family members are so much less likely to be taken in. Even wordlessly that awareness can be conveyed in a way that makes the patient less likely to engage in those little evasions.
Perhaps you can explain it to her in a way that lets her enjoy her special relationship while respecting that you are experiencing the slow loss of your mother, which is an awful thing. I hope you can find a way to enjoy the respite that the friend allows. Her assumption that she knows more than you do must be painful, but if she and your mother can have a good time, on whatever level, that has to be a positive thing. Eventually she will come to see what the truth of the situation is, even if you can't make her understand right now. Good luck.
Gosh, this is a hard one, I don't really know what to say but one thing I have found, with me, my husband is very difficult to understand speech wise and I really struggle but it seems when other family talk to him he is far more clear, I don't know, he probably tries harder than he does with me. And yes I think also denial in some people, it doesn't help us, it's so very hard to get people to understand this awful PSP, ️xxx
My husband rarely says a word to me. If I ask him a question he grunts and I have to stick with yes/no questions if I want an answer as then he can put thumbs up or down. This morning a friend popped in and very clearly my husband said, " Hello, have you been shopping?" I don't suppose your mum has lengthy conversations with your friend but as the friend is a talker, perhaps mum responds occasionally with a word or to. It may seem to her that they have had a conversation when in reality it is very one sided. People see things differently, some focus on the positives, which I tend to do, whilst others find it more difficult and focus more on reality. Your friend may think it will cheer you up a bit to make funny comments and look on the bright side. I have friends who come to my house and will follow me to my kitchen and cry at the sadness of it all. Others will come in and immediately say something funny. I did all my crying at the time of diagnosis and now have as much fun as I can, including my husband as much as possible. I'm not sure having a discussion face to face will do much good and it may spoil 30 years of friendship. You know her and you aren't sure she will understand. As she is so good to your parents it would be a shame to spoil things as when they get even tougher, and they will, you will need all the support you can get. Eventually she may accept things as they really are but maybe she will always be chatty about it. If someone spoke to me about my husband in a similar way I would probably say, " Wow, that's amazing, I can't get a word out of him, you'd better come more often".
Your mum probably retains much more than you think but can't get it from her brain to her mouth to let you know.
Hi Kate, I know how you must be feeling, it's hard when someone else seems to be getting more out of your loved one than you can.
I agree with NannaB and Easterncedar, just be glad that your friend is sitting with your Mum, people like that are very hard to find! It's giving your Mum some company and George a bit of a rest. If you feel you can't cope talking now to this friend, then Kate, as hard as this may sound, find some else. We all respond differently to other people, especially to outsiders, your Mum is no different. Be grateful that she can still "talk" to others.
Kate, you know I understand and what I have said may sound cruel, but I would love for someone like your friend to come and talk to S. My mum has Alzheimers, I can no longer talk to her, but others don't even realise that she is ill, even her brother thinks my sister and I are over reacting, even though she is now in a home, because social services have said she not safe at home anymore!
Just another day, another kick in the teeth from this horrible world that makes us all suffer so much at the end of a long life!
There is a saying that I like 'Least said, soonest mended'. Why do you feel you have to say something/anything? Because your friend is trying to be positive? Because she is trying to strike a lighter note? Or are you a tiny bit jealous that she seems (I repeat 'seems') to be having more rewarding times with your mum?
I really don't mean to sound harsh about this but I think you should question your motives. Does your mum enjoy these visits? Would you want them to stop?
Maybe your friend you are depressed and is trying to lift your mood - obviously not in a way that is working for you. Maybe you could just say, in passing, how difficult you find it hearing about the fun times this friend and your mum have when communication is difficult for you.
Sometimes when you are so involved in the day to day difficulties it is hard to see the big picture. Please think carefully before you have the 'conversation'
long before John was diagnosed , in company after a while he would suddenly change the subject . I use to get embarrassed and tell him of for being rude .
I now realise they IT was the only way he could cope . It's wasn't deliberate he couldn't keep up .
he also says very little and if I ask a question ( by the way only ask one thing at a time )
Will often not even appear to have heared it is very frustrating even though I understand .
Kate I had to reply to this post as it so hit a chord with me. In my instance your friend scenario is actually my brother! He lives abroad and then works somewhere else abroad from home so doesn't get to see Dad very frequently.
When he was over in Jan he made me and my sister feel like we were completely exaggerating Dad's decline. We had the "don't know what you mean about the 1 word answers, Dad spoke loads to me"....god it really hurt. However I do know it is exactly his coping mechanism, he is terrified of Dad having PSP and I think he feels if I just pretend I can't see the changes it'll all be alright.
I am finding very few of my very dearest friends are truly getting it. My sister and I feel we are the only ones who really understand how we feel. And as you say this site is a complete godsend as everyone fully understands.
Losing our parents (as it really is both of them but in different ways) is the hardest thing to watch, I completely and utterly empathise.
Reading your and your Dad's posts though make me smile, you obviously have a strong love between you and that I hope will keep you going.
Both my parents continue to be in denial and it is really causing so much damage to our relationship with our parents. We love them with all our hearts but my sister and I are at a loss as to how to get them to acknowledge what is happening.
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