Hi and welcome to the forum. I have not posted much since joining late 2019, but am always looking in. I guess I was never sure what I could offer regarding advice because each person is so different. I live with my partner Alison and her father Ken. There were four of us in the house, but Alison's mum passed away last July with Pancreatic Cancer. The problem as I see it, is spotting the onset of dementia and doing something about it. In our case Ken started doing strange things that were completely out of character. I am not going to go over the out of character points because you have clearly had a diagnosis. What I will do is be completely honest and open with the now unusual traits that we are experiencing. These may or may not be relevant, but it is what has affected his everyday life and indeed ours. Ken is 83 years old and was diagnosed in April 2019. The pre-diagnosis, which is where you can place the beginning, or onset and in our case, was 2016. So it took three years to have a proper starting point where we could work with the FTD. (Frontotemporal Dementia) He has developed the behavioural version, but as yet, no violence. Ken would read an awful lot of books, do crosswords every day and was a very switched on chap. Literally overnight, three years ago, he stopped reading books and doing daily crosswords. So this was before he had been diagnosed. We always pursued the hope that he would take an interest in reading again and the closest we ever got, and indeed get, is giving him a newspaper, which takes all of 2 minutes to read. He is just not interested. Unfortunately for us, Ken has never been much of a social person, so group meetings were never on the cards. Hopefully, your grandfather might be different. Of course, I don't know if your grandfather lives on his own. If that is the case, it is going to be virtually impossible for you to do much. If your grandmother is alive, it is going to take its toll on her. Some of the huge traits that will follow through as the disease takes hold, will no doubt show themselves to you. One problem is food. The brain will tell the body it needs food. In our case, Ken was getting into food at night while we were in bed. He would go into the freezer and eat anything from fish to faggots and yes I really do mean that he would eat them while frozen. In the end to stop it, we had to lock the freezer. I used 2 luggage straps with a combination lock and it did the trick. Everything in the fridge was bagged so we would know if he was trying to get into anything. Now, the only thing he does, is squeeze tomato ketchup into his mouth during the night. There is a bottle of diet lemonade in the fridge that he would swig out of, but that has stopped. I will lock the fridge at some point if I have to. He is very immobile, using a walking frame which has gone on four 4 years. The FTD is responsible for that and he would lose a race against a snail. We are lucky to live in a Bungalow and he has to walk from the lounge where he has a hospital bed to go to the toilet. This leads me to the next trait. You are sure to have problems in the toilet area. I have spent 4 years trying to prevent accidents. I say me because I have never wanted Alison or her mum to deal with it as long as I was in the house. There has nearly been war a few times over it. It is tough because deep down, you know that he is probably doing it because of the FTD. I was very lucky because I was able to take the lock out of the toilet door handle and created a spy hole. I have averted many problems by being able to see, to a degree, what he is getting up to. When the toilet problems first began, he was weeing in the bathroom basin. Alison's mum was devastated because she would wash not realising it was going on. It was evident he was not using the toilet and took a stand by banishing him from their bathroom. We decided to place a plastic jug on top of the cistern in the toilet he uses and he tips it down the loo. It solved a problem that we did not want. It is mainly because he won't sit on the toilet. This is also the case with number 2 toilet. He will tear off paper and pull it from his bottom. I can see it happen and sometimes it will land on the floor. He would try to clean it his self and it still does my head in. I always challenge him over it, even now. He either ignores me or says 'how else does someone go to the toilet?' It is a battle, but he still does not realise the hole is there. I don't want to look through it, but I have to. He has lost his balance a couple of times and gone down. Not easy to get him back up, but it happens. A lot of detail, but could be useful information. Urine has always been a problem, and we were at one time buying pads from Sainsbury to put in his pants. after too many accidents, we decided to buy all in one pants. Believe me, it was the best thing we ever did. Self management is sometimes tough because he can wee several times into them as well as coming out to spend a penny many times a day. We manage it most of the time by asking him to change a few times a day. They have never leaked and we no longer worry at night. We applied for Attendance Allowance for him and this easily pays for the pants which we get in bulk from Boots online. Hygiene in general will become a problem, such as getting him to wash, shave and shower/bathe. In the end, I decided to shower him myself. I have perfected a routine with the shower and a morning routine. For decades, he would shave with a wet system. I got him a Phillips rechargeable shaver. It took a while to get him to change, but now he just gets on with it. I always have to take over at the end because he never shaves properly. I then get him to clean his face with baby wipes. Not quite a proper wash, but works well. Every other day I rub some moisturiser into his face to keep it hydrated. I think that's enough for now if you managed to get this far. I hope this all helps, should it in any way present itself at any point. Don't despair as there is always someone to give you advice and support. Remember, everyone is different, but we have experienced these traits. Alison and I are lucky because we are self employed and create from home anyway. Things will change now with Alison's mum gone and of course Covid. Every day is 'Groundhog Day' but you just get on with it. I wish you well and hope you don't have too many problems. Hopefully your NHS experience will help, but don't ever forget you are only human. Reach out if you need to. ? xx
