Looking out for mum and dad

[cath1124]

Hi,
This is my first post on here and I don't really know what I'm looking for from this. Some support or advice maybe I suppose. I'm 20 years old and 6 months ago my Dad was diagnosed with early-onset (he's 58) although he had been showing signs for years previous. It has been a very stressful time particularly for my mum as she was pleading with doctors for a diagnosis, so was a bit of a relief when we finally knew although still very upsetting. Since Christmas there has been a noticeable change. he's becoming more confused easily and mixing up times and has become really quiet in his daily life when normally he was always chatty. We think he might have to give up work soon as it has become more difficult since where he works memory is a big component and he has weeks where he makes a lot of mistakes and finds it upsetting because he never did that before, but then he has some good weeks too. I'm worried about a lot of things coming in the future. Particularly from reading about other peoples situations on here especially re; incompetence and mood swings? I'm terrified. I try to enjoy the time we have now together but I can't help worry about whats coming. I worry even more about my mum. She is a strong woman but has her own health problems and obviously my dad being sick is extremely stressful especially the financial side since she can't work either. I'm trying my best to be there for the both of them but I cry myself to sleep every night about the situation. Also i am in university and I'm going on a study abroad year in september and I'm worried about my mum being alone with my dad in the house all the time. I have two brothers who are both moved out and I know they will help out but they also have their own lives. I'm also worried about missing out on the time with my dad and noticing a huge change when I come home. I wasn't going to go on the year abroad anymore but my mum and dad both insisted because they don't want me to miss out just because of his illness. I have told a couple of my friends but its difficult for them to understand how upsetting the situation actually is. I won't say anymore on this post as its long enough by now but id love to hear if anyone is in the same situation or has any advice on how to be there for my parents or how to stop feeling so upset all the time. sorry for the long post! thanks

 

[LadyA]

Hello @cath1124 and welcome. I'm sorry to hear about your dad's diagnosis. What you have to concentrate on for the moment is that essentially, nothing has changed. Your dad is the same now as he was the day before he was diagnosed - it's just that now, you know.

Dementia can be a slow moving illness, and hopefully, that will be the case for your dad. Go for your year abroad. There is Skype and Facetime etc. You can keep in touch. Will you notice a change when you come back? Possibly. But you remaining at home will not stop that change. It would only make your dad feel like you were giving your chance up because of him. I don't have Dementia, but I'm your dad's age, and I would hate to feel my own daughter had been held back because of me. Apart from Skype etc, send your dad regular postcards. One of my husband's grandsons used to send him colourful cards, and my husband just loved getting them. He'd carry them around and show them to everyone.

 

[canary]

Hello @cath1124 and welcome to Talking Point.
My husband is about the same age as your dad and I have a daughter just a bit older than you, so Im rather in your mums situation.

If you were my daughter I would not want you to give up on your future either, so please listen to your mum and dad. Dont be scared by what you read on here, no one with dementia gets every problem. The financial situation can be hard, but I think it always looks worse when you are looking at it from the front. If I had been told a few years ago that neither my husband nor I would be working I would have hyperventilated at the thought, yet somehow we are surviving and finding a way through.

It is lovely that you are concerned about your parents and want to help, but dont feel you have to be there all the time. My daughter is now living in Cambridge, so I dont see her very often, but she phones me and that is a great support. It is also a great comfort to me to know that she supports the decisions that I am having to make - it means an awful lot that I dont feel I am fighting family as well

 

[cath1124]

Hello @cath1124 and welcome. I'm sorry to hear about your dad's diagnosis. What you have to concentrate on for the moment is that essentially, nothing has changed. Your dad is the same now as he was the day before he was diagnosed - it's just that now, you know.

Dementia can be a slow moving illness, and hopefully, that will be the case for your dad. Go for your year abroad. There is Skype and Facetime etc. You can keep in touch. Will you notice a change when you come back? Possibly. But you remaining at home will not stop that change. It would only make your dad feel like you were giving your chance up because of him. I don't have Dementia, but I'm your dad's age, and I would hate to feel my own daughter had been held back because of me. Apart from Skype etc, send your dad regular postcards. One of my husband's grandsons used to send him colourful cards, and my husband just loved getting them. He'd carry them around and show them to everyone.

Thanks so much for the reply! I know this is how my dad feels but I can't help feeling a bit guilty for leaving if only for a year. I know he is happy for me to go and I'll just have to keep that in mind when I'm there. I love the postcard idea, he'd love that. Thanks again

 

[cath1124]

Hello @cath1124 and welcome to Talking Point.
My husband is about the same age as your dad and I have a daughter just a bit older than you, so Im rather in your mums situation.

If you were my daughter I would not want you to give up on your future either, so please listen to your mum and dad. Dont be scared by what you read on here, no one with dementia gets every problem. The financial situation can be hard, but I think it always looks worse when you are looking at it from the front. If I had been told a few years ago that neither my husband nor I would be working I would have hyperventilated at the thought, yet somehow we are surviving and finding a way through.

It is lovely that you are concerned about your parents and want to help, but dont feel you have to be there all the time. My daughter is now living in Cambridge, so I dont see her very often, but she phones me and that is a great support. It is also a great comfort to me to know that she supports the decisions that I am having to make - it means an awful lot that I dont feel I am fighting family as well

Thanks for your reply. Me and my mum have quite an open relationship and especially since the diagnosis I've asked her to be honest with me rather than try to hide things from me because I'm the youngest and that's exactly what she's doing which has been good for both of us. Although we both have bad days and can snap at each other still. I'm just wondering from a mothers point of view is there anything you think I should be doing for my mum to help her? I already bring her for coffee and lunch regularly so we can have time just the two of us and talk things out but I'm trying to think of other things that maybe she doesn't want to ask of me? thanks

 

[canary]

Coffee, lunch and normal conversation with perhaps a bit of a laugh, or maybe heart to heart sounds wonderful. You are such a caring daughter.
Giving your mum your support and backing is invaluable. When your spouse has dementia you find that you have to gradually start taking over the running of the house. I have had to take over the bills and financial decisions that my OH used to do (because he was better at it than me) and all sorts of other decisions that OH would not agree with, but have to be done. It is unsettling and I often find myself questioning whether it is the right thing to do - even though I know deep down that it is. Talking Point helps, but the greatest thing is knowing that my children support me and it gives me confidence.

Get rid of the guilt. Guilt is almost universal on these boards, but there is no need for it - it eats into our hearts and steals away our lives. Go and take that year out. Your dad will still be here when you get back.

 

[LadyA]

@cath1124 Perhaps something you could do for your mum is to introduce her to Talking Point too!