I feel out of my depth

[mum&daughter1]

Hello, my dad who is 8 years younger than my mum was diagnosed with Alzheimer's in 2021/22. He has other health issues also. And last year Mum started showing worrying signs and has now overtaken Dad in how much her memory is lost and is disappearing. She is 81. After a long wait we have the memory nurse coming on Tuesday to assess and hopefully formally diagnose her so that perhaps we can start some sort of medication as the speed it is changing her is really frightening. She is very frail, has IBS and has balance issues. When dad was diagnosed it was a long process because mum was concerned but she's make excuses, but she'd confide in me about the strange things he would say and not remember, But she still had a go at him in her bossy way when he did things wrong- thats how they always got on, but now it seemed cruel. I had to take her shopping as an excuse to get her alone and sit in the car and patiently say that it was really hard when she has a go with him and just said he's not coming back. As in the dad who was so practical and clever is in the past and he isn't doing it on purpose, but he really just doesn't remember things or work out things like he used to. And it was when she insisted that she would get Dad to drive to his sisters 80th party and back on the same day which is 2 hours away; that we could have all stayed at, and that we as a family with my husband and kids were going to in separate cars that we offered to be in front so that they could follow, but she wanted to go early to; that took them 5 hours as they got completely lost and included many panicked phone calls and us trying to guide them to his sisters- that she finally relented and got the doctors to start the process of getting a diagnosis. And last year mum after a couple of bouts of infection started showing worrying signs. Things like missing my daughters birthdays and not showing any concern about coming over to us for one of their birthday dinners as she didn't quite feel like it- something that would never have ever happened before. Giving a frozen card to a 17 year old. But then the worrying signs like finding out that she gave dad the wrong dosage of medications for his shingles pain. So I started slowing creeping in to help which started when I insisted on going to a specialist arthritis appointment for a painful flare up that he has been to a month before but couldn't remember anything about. And that's when we found out that he was on 1 tablet instead of the 7 that the doctor increased his meds to which is why it wasn't working. And so I took over both parents medications into pill dispensers which they both protested against, but realized that they had both been taking wrong dosages and both are on a lot of tablets. And then I find out that they even missed taking the tablets as they forget despite it being in a marked up pill pack. So then got a pill dispenser with alarm on. And the more I crept in to help and see what was really going on on weekends (as I work full time and have a family) I tried to take note and found out more of what was going on. Like trying to actually see what each was eating and drinking. I started to clean the house regularly and did it in bits to see what was being missed if I didn't do it. And it all started forming a picture slowly. The latest horrible thing is that mum now doesn't wash or change. The occupational therapy team have been in and fit rails and will be fitting a walk in shower as she cant get in and out of the bath, but this has been several months we have waited and will have toi wait for them to do this work, so I put a chair in the bath so I could help her and got Dad to help shower her so he could help her do it as she kept saying she has a stand up wash, but didn't actually and it's just not how mum is or has always been. So that didn't work as she'd say she was ok and didnt need to so he's just not. So in January I insisted that would come once a week and we would do this shower and wash her hair each week as a regular thing. But I literally only wash her hair and try to get her to wash with a flannel while she is on the chair, but she doesn't wash anywhere apart from her face and arms. And I don't know what to do. My concern is that she is double incontinent but in denial. And I have given her patient wipes to use aside from this time and suggested that she uses tena ladys that I've bought her, but she says she is fine and has no problem at all. And last week I was terrified she would fall off the stool and thought it would just be safer to wait until the wet room is fitted which may be months- but she had remanence of the incontinence and I just cant bring myself to mention it. She just clings to the rail and then we get her out and she dries off. I just don't know what to do. On Tuesday she will be seeing the dementia assessment nurse and she smells terribly. And I suggest her using the wipes but she says she's fine and to stop worrying. And god this is so hard. What do I do or say. And today I had them over for Sunday dinner and she messed herself so it went on the seat but no-one said anything, thank goodness- and she acted like all was ok, and I cleaned up when she went home, but what do I do? It so very sad and such a worry. And I feel like I am totally intruding and its her privacy. She never wants the shower, but I try and just be all right lets choose what cloths to wear after and you will be all clean and then Dad will do you a sandwhich for lunch and it only takes 10 mins etc. She laughs after the shower when I wash her feet in a bowl and says that I am taking care of her like when she did to me when I was a baby, and its ok then, but I just am not sure even if trying to help her shower is the right thing. Does anyone know what I mean. I am just so new to this and want to do right by her.

 

[PollyMolly]

Having experienced similar with my dad, it sounds very much like all this is now too much for you to manage , especially since it involves both parents. You sound like you are doing an incredible job but that mum now needs more specialist care than you alone can give. Have you asked for a social care needs assessment? This may trigger some extra provision. What about speaking to your mum’s GP to get the ball rolling?You could say that this is a safeguarding issue if you feel that your parents can’t keep themselves safe ( eg mixing up meds etc) . I’m aware that the system is disjointed ,fragmented and it took ages to help our mum realise that she could no longer cope with dad at home and that the time was now right to think about a care home for him. But many assessments later, and a ( failed ) attempt to get CHC, dad is now in a lovely care home . I’m not an expert so there may be more knowledgeable people to help you on here, but it sounds as though you are reaching the end of the line in terms of coping with all this alone? I do hope you get the help you need - it’s all so distressing isn’t it ? X

 

[jennifer1967]

i had a stool in the bath because i couldnt stand up when showering and it was over the bath. my husband couldnt get in the bath so had strip washes at the sink until they adapted ours to a wet room. the ot from council came and told me it was dangerous to have stool in bath and did put hold rails on. they put it on an angle like a slant which i found easier. my husband ,anaged until we got the bathroom. i have to shower him now but it is so much easier. we do have a fold up chair that is attached to the wall.

 

[Collywobbles]

There may be a small silver lining here. Your Mum being ‘aromatic’ when seeing the dementia nurse, will be no bad thing. It will reinforce the type of problem that exists, so please don’t feel bad about that. I’m quite sure that dementia nurses see/smell much worse, every day.

The best of luck to you,

 

[mum&daughter1]

Thanks for that. I think I will now wait until the new wet room is finished as her falling with obstreperous as well as her mobility issues is much much worse than her being unclean. Thanks for reassuring me. I have just gone through the assessment thing with social services and just waiting back . Its a case of putting things in place for the next stage while getting them to agree to having another person in to help a tiny bit first to slowly getting more outside help. At the moment i agree I need a bit of help with the day to day and just having another set of eyes would reassure me as my daily phone calls and small visits apart from the weekend don't really get a full picture. But as there are 2 of them and they are both very "we're fine don't worry" its like I'm in a constant battle to get the next step in place- like the alarm thing with the date on that i program with things such as the appointments, that Dad turned off. And then yesterday i called to ask if we could make the time they came over for sunday dinner a bit later as I was at the vets with my pet (not looking forward to that bill but hopefully after 2 nights on a drip he is getting better) and my dad got confused. I had only been there on Saturday doing meds etc, so when I texted to say can we make it 30 mins later he said they had both forgotten completely and so would be a little later. And when I went over to the house he again had taken out the plug from the display that tells him the day as he doesn't need it. I tried to point out that it would have reminded him that it was sunday and not saturday, and that it would have said the message about sunday dinner at ours. Its slowly just getting them to agree to help and these little things and see that these things are to help and be a safety net and to not take offence at them The times I have gone over after a call as I was sure something wasn't right is scary. And someone trained to see things would help. Thanks again x