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[Caron49]

Hi, my dad has just recently been diagnosed with dementia, at the moment we don't have a definite diagnosis just that he has a "significant impairment". A doctor is coming to his home this month to discuss the diagnosis with us both and what the next steps are. The trouble is my dad thinks there is absolutely nothing wrong with him because he says he can remember way back to when he was very very young, that's great but he doesn't realise that it is his short term memory that is the problem. He got very upset when I mentioned to him that the Memory Nurse was coming to see him, this was in July of this year, and again when the Clinical Nurse Lead came to see him just last month. His words to me were "oh you have just spoilt my day, I don't know why she is coming, she's wasting her time because there is nothing wrong with my memory." I did try to explain but he wasn't having any of it so I just left it. Thankfully, he was fine when she came the next day. I haven't actually told him that the doctor is coming this month because I don't want to spoil his happy mood and in his words spoil his day again. In all honesty, I am really struggling with all of this and I am totally aware that my dad will be too, he won't have a clue as to what is really going on and I can't be the one to explain it to him because I don't understand it myself. I am, therefore, leaving it up to the doctor to explain it to both of us. I am struggling with this because it is so hard to watch someone you love so much, especially when they are your hero as well as your dad, friend etc etc, go through what he is going through on a day to day basis, it is heartbreaking and I really don't know what to do. I go everyday to my dads for 12.30 pm (sometimes earlier depending on if he has a doctors appointment or something else on.) I do all of his washing, cleaning, housework, shopping, set his medications up for the day, arrange all necessary appointments ie doctors etc etc, banking and cook his evening meal before I leave to go home at 5 pm and anything else that he needs help with or I can do for him that he is unable to do. I have no problems with doing this at all, I have always said that I will do anything for my mam and dad (unfortunately, I lost my mam 8 and a half years ago, suddenly) and to be able to help my dad and be there for him on a daily basis is the best thing ever and I wouldn't have it any other way, I do it because I want to not because I have to. My dad is a very independent, private, strong and lovely man who can still look after himself in many ways but I do worry about the future and what it holds even though I do try to just take one day at a time and enjoy the time with my dad. We do have a lovely Social Worker who is a huge help to us both as is his doctor's surgery. So why is it that I still feel I don't do enough?
Anyway, that's where I am at, at the moment. Thank you for listening and I feel so much better already for sharing this with you. Take care

 

[canary]

Hello @Caron49 and welcome to DTP.

Its really common for people with dementia to not be able to comprehend that they have something wrong with them. You will never be able to convince them because they are truly unable to see it. It is, unfortunately, a symptom of the dementia itself. Im afraid that you will find that you will have to be "economical with the truth" and not tell your dad quite a lot of things until the very last minute. I would put telling him about appointments in that category - if you tell him in advance it just gives him more time to get aggrieved about it.

I am concerned about your level of input. Dementia will, unfortunately, take everything you can give and still want more, so you will need to think very carefully about what you can and (more importantly) what you cannot do. Caring for someone with dementia is a marathon, not a sprint and if you try and do too much you will end up with carers burnout or a full-blown nervous breakdown.

 

[karaokePete]

Hello @Caron49 you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Pete1]

Hi @Caron49, it sounds as though you have a brilliant attitude by taking one day at a time and enjoying your time with your Dad. It is inevitable that you will think of the future, but at the moment it sounds as though your Dad is doing well with your considerable support. You can't do anymore, I'm sure you want your Dad to be back to how he was and to arrest any further decline, sadly that can't happen, but please do not see that as a failure is any shape or form - it isn't. You need to make sure that you look after yourself too, it can feel quite a lonely existence, I know when I did similar (with the support of Carers too) I felt quite isolated, as friends and even family had no understanding of the emotional impact that it has. All the best - do let us know how it goes with the Doctor.

 

[Caron49]

Hello @Caron49 and welcome to DTP.

Its really common for people with dementia to not be able to comprehend that they have something wrong with them. You will never be able to convince them because they are truly unable to see it. It is, unfortunately, a symptom of the dementia itself. Im afraid that you will find that you will have to be "economical with the truth" and not tell your dad quite a lot of things until the very last minute. I would put telling him about appointments in that category - if you tell him in advance it just gives him more time to get aggrieved about it.

I am concerned about your level of input. Dementia will, unfortunately, take everything you can give and still want more, so you will need to think very carefully about what you can and (more importantly) what you cannot do. Caring for someone with dementia is a marathon, not a sprint and if you try and do too much you will end up with carers burnout or a full-blown nervous breakdown.

 

[Caron49]

Hi Canary, thank you so much for your reply and your concern regarding my level of input with my dad. I greatly appreciate your advice and will take it on board in the days to follow. I am so pleased I have become a member of this group, I already feel better due to the fact that I am in contact with people who fully understand what I am going through and how much the advice I have already been given is extremely helpful. Take care and many thanks.

 

[Caron49]

Thank you so much for your reply, I am pleased that I have joined this forum already just because of the fact that you understand what I am going through and the advice I have been given already is extremely helpful. Yes I will keep posting and I will definitely let you know how it goes with the doctor, thank you so much take care.

 

[Caron49]

Hi there, it's been a while I know but it's been a bit of a hectic time what with one thing and another. We have a diagnosis for my dad, Alzheimer's with possible Vascular Dementia. He, fortunately, hasn't a clue what is happening but I do and that's what am really struggling with. Sometimes I find myself snapping an answer to him and feel so guilty, just the other day I apologised to him cos I wasn't as patient as usual and he wasn't in the least bit bothered, he said "oh don't u worry about anything like that, you are no bother at all, I would be totally lost without you", it just completely went over his head which I guess is a good thing cos at the end of the day I just want the best for my dad. However, I want to be able to deal with it a lot better but when talking to the CPN, who came out to see my dad and I today, I realised that I cant/haven't accepted what's happening, I am in denial. I know what I have to do and I know that what I am doing the majority of the time is right and have dad's best interests at heart and I know that no one is perfect etc etc but I don't feel I am dealing with it like I should. My dad and I have always had a really good, loving, easy going father and daughter relationship and cos the whole dynamics have changed within my dad, through no fault of his own, I am finding it extremely hard to adjust. I feel that there is a small bit of him disappearing each day, my heart is breaking, Please tell me that all of this is normal and I am doing everything right. Thank you.

 

[Pete1]

Hi @Caron49, I'm so sorry that you are going through this, sadly what you are experiencing is 'normal'. It is a frightening, frustrating and incredibly sad experience. Many of us have snapped at loved ones with dementia (there have been many threads on here about that very thing), and experience the terrible feelings of guilt after. Dementia is often referred to as the long goodbye and you can experience dreadful feelings of loss through that journey.

You sound as though you are really struggling, which is totally understandable, do you have any support yourself?