It's MY Dad and it's horrible. I'm very much on my own with Dad

Exhausted 55

New member
Aug 1, 2021
5
0
My Mum died in 2003 of cancer. My Dad (92) has lived with me for over 7 years in an annex and it was lovely at first but since Lockdown's and having to give up his car (too dangerous!) he has gone into decline. He still makes his sandwiches and cups of tea and says he showers, indeed he gets wet, but the soap is always dry and the shower gel is magic as it never needs replacing. He wears the same clothes for several days and if his pyjamas are missing it's because he's put his clothes on over them. I tried showering him but it was too much of an ordeal for him and for me. I've tried putting his clothes out the night before but that doesn't work. So I've taken a deep breath and I've stopped lecturing him and instead I sneak in when I hear him in the shower and swap his dirty clothes for clean ones. I have to check the bathroom several times a day as he sometimes puts poo down the sink leaving remnants around the taps which in the past I've mentioned to him in a way I thought might make him stop, for example asking him if he's having trouble going to the toilet and explaining why I'm asking. He just looks at me blankly then shrugs his shoulders or no and continues to watch the television. It reminds me of the old joke "what did the constipated mathematition do? He worked it out with a pencil" Reading posts I realise that this is what dementia looks like and it appears to be a normal stage of behaviour . But it's MY Dad and it's horrible. I'm very much on my own with Dad. He doesn't have a diagnosis and I struggle at times, a lot of the time to be honest. It's only going to get worse isn't it. I'm glad I found this website because at least I know everything I'm experiencing has been experienced before. It's the nature of the beast isn't it. Thank you for listening.
 

Herecomestrouble

Registered User
Dec 11, 2018
38
0
Dear @Exhausted 55 , I feel moved by your post..what a lucky dad to have a daughter like you. As you say, for all that it is “normal” for dementia, it is YOUR dad, and that makes the world of a difference . To other people he is just another old man , but to you he is everything that your father represents and is, and it is heart breaking for you to see that person decline. I think professionals can easily forget ( or maybe need to in order to do their job) the very personal dimension. Somehow I think we have to detach the person that our loved ones are now, from the person they used to be and try to keep them separate, but it is very hard, and an ongoing process of grief.
 

Exhausted 55

New member
Aug 1, 2021
5
0
Dear @Exhausted 55 , I feel moved by your post..what a lucky dad to have a daughter like you. As you say, for all that it is “normal” for dementia, it is YOUR dad, and that makes the world of a difference . To other people he is just another old man , but to you he is everything that your father represents and is, and it is heart breaking for you to see that person decline. I think professionals can easily forget ( or maybe need to in order to do their job) the very personal dimension. Somehow I think we have to detach the person that our loved ones are now, from the person they used to be and try to keep them separate, but it is very hard, and an ongoing process of grief.
Thank you for responding. It made me cry but in a relieved way, in a way that said, it's okay, I understand. I am grieving and when I'm cleaning up mess for the second time in one day whilst trying to work and care for the rest of my family not only am I grieving for my Dad but for the loss of me. I try to brush aside the grief of losing myself in the process too. Inside I'm screaming, what about me! But there is no one listening so it just echoes inside my mind and then I give myself a talking to; it's not going to be forever and one day the sink will be shiny and the taps bright, and he will be gone; forever. I used to have a fun and outgoing independent father and now I've got a different one who needs me to love him, and I do. So thank you for your kindness and reassuring words. I appreciate it.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
0
Nottinghamshire
Hi @Exhausted 55 and welcome to Dementia Talking Point. This is a very friendly and supportive place and you're among others who've had very similar problems.
I've think you've hit the nail on the head about it being YOUR dad and not just a random elderly man. My mum is in the later stages of dementia and it is so sad her carers will never know what a wonderfully witty, funny and assertive woman she was. Now she is an angry old lady who makes no sense and can barely walk.
I think you need to start the process of getting in some extra help. You could contact your local social services for a care assessment for him and a carer's assessment for you. I know SS are very stretched and it might be a while before they get round to seeing you. If your father has over £23,250 he will be self-funding so you could just go ahead and arrange some carers to come in a couple of times a day. Certainly they'd be able to manage helping him shower and sorting out the poo problem.
This link may be useful too https://www.alzheimers.org.uk/
Finally do you have Lasting Power of Attorney. If not I'd try to get that organised as it will help a lot as things progress
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Exhausted 55
a warm welcome to DTP
many of us here will understand your " Inside I'm screaming, what about me! But there is no one listening"
now you've joined DTP we are listening so post with anything that's on your mind, we may not be able to solve all issues but members will offer sympathy, support and useful suggestions
 

Exhausted 55

New member
Aug 1, 2021
5
0
hello @Exhausted 55
a warm welcome to DTP
many of us here will understand your " Inside I'm screaming, what about me! But there is no one listening"
now you've joined DTP we are listening so post with anything that's on your mind, we may not be able to solve all issues but members will offer sympathy, support and useful suggestions
 

Exhausted 55

New member
Aug 1, 2021
5
0
Hi @Exhausted 55 and welcome to Dementia Talking Point. This is a very friendly and supportive place and you're among others who've had very similar problems.
I've think you've hit the nail on the head about it being YOUR dad and not just a random elderly man. My mum is in the later stages of dementia and it is so sad her carers will never know what a wonderfully witty, funny and assertive woman she was. Now she is an angry old lady who makes no sense and can barely walk.
I think you need to start the process of getting in some extra help. You could contact your local social services for a care assessment for him and a carer's assessment for you. I know SS are very stretched and it might be a while before they get round to seeing you. If your father has over £23,250 he will be self-funding so you could just go ahead and arrange some carers to come in a couple of times a day. Certainly they'd be able to manage helping him shower and sorting out the poo problem.
. If not I'd try to get that organised as it will help a lot as things progress
Thank you. I called social services but they are so overstretched it's been months now. I've completed the forms for Lasting Power of Attorney using the government website and have only recently sent it off so I guess that will be a while. Dad was so poorly after having the vaccine and it was when no one was allowed to accompany loved ones to hospital and it was incredibly traumatic as he was whisked away in an ambulance and I wasn't permitted to go and advocate for him. He was alone and scared. When he came home he was changed and sad and I promised him I'd always be here for him. He was poorly for a while after and I had to have the doctor again and when she told him his oxygen levels were low and he needed to go back to hospital he was so afraid that she said we could try and managed his condition at home. He did get physically better but I think the trauma hastened his decline. Anyway, it is what it is and I will carry on and when it gets too much I'll look at getting outside help. It is good to know that this group truly understands and I am grateful. Thank you
 
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Claire250

Registered User
Sep 25, 2021
22
0
Hi @Exhausted 55, so much of your post chimed with me, especially the feeling of screaming but no-one listening. What you're going through with your dad is what I'm going through with my mum. I understand and am here to listen if ever you need an ear, a chat or a rant.
 

Hazara8

Registered User
Apr 6, 2015
697
0
The love and unremitting Care which one gives unreservedly to a loved one in these circumstances is what proves to be in itself, a challenge. Unlike " normal" Care, the Care which evolves out of dementia is a very different beast. It is the total vulnerability of that person - whether mother, father , sibling, partner - which is placed at your door. Not just the practicable or ' nursing ' aspects, but the psychological vulnerability in essence, which is what makes the continuity of that Care a genuine challenge. In a way it is made harder when you have that profound relationship ( daughter) because the emotional attachment is constantly under attack. You want to eliminate distress and depression , manage confusion and apprehension, curb anxiety and nourish any semblance of cognition whilst going about your everyday chores which relate to washing, medication, meals and so on. All of this and more is set at your behest every day and every breathing moment. Added to which, one has to come to terms with the 'alienation ' which presents in dementia - what is that loved one thinking or feeling? Even the most qualified clinician cannot answer that. Thus, the father one has known all one's life, claimed by this foreigner dementia , is subject to change. Change which is totally uninvited. Change which places perception into another category - confusion. All of this and more is placed into your Care. And when those who function and advise from a removed standpoint and do so professionally and willingly, with relevant expertise and advice - social services, doctors and Care staff et al - they nevertheless do not engage with that which is inherently yours and yours alone. The bond of emotion, blood, affinity, memory, intimacy and overall psychological attachment which makes for demands upon physical and mental capacity which can be immensely debilitating. Yes, it is true that one is not alone as this Forum can so clearly testify. But unless one has trodden this path with all its variations and challenges, then it is very difficult to empathise with meaning. Alas, l have witnessed where that "bond" is sadly absent or perhaps tainted with mitigating factors which erode that relationship. Then things are different. But when instinct prevails and the role of Care is grounded in love, then you continue regardless and that can make you vulnerable too. At the end of the day if there is mutual accord and authentic understanding , as so often presented on this Forum, then that underpins the true meaning of Care and honours individual endeavour, albeit at a distance. The rest you will know only too well, because you are doing it.
 

Sydney21

Registered User
Sep 25, 2021
12
0
My Mum died in 2003 of cancer. My Dad (92) has lived with me for over 7 years in an annex and it was lovely at first but since Lockdown's and having to give up his car (too dangerous!) he has gone into decline. He still makes his sandwiches and cups of tea and says he showers, indeed he gets wet, but the soap is always dry and the shower gel is magic as it never needs replacing. He wears the same clothes for several days and if his pyjamas are missing it's because he's put his clothes on over them. I tried showering him but it was too much of an ordeal for him and for me. I've tried putting his clothes out the night before but that doesn't work. So I've taken a deep breath and I've stopped lecturing him and instead I sneak in when I hear him in the shower and swap his dirty clothes for clean ones. I have to check the bathroom several times a day as he sometimes puts poo down the sink leaving remnants around the taps which in the past I've mentioned to him in a way I thought might make him stop, for example asking him if he's having trouble going to the toilet and explaining why I'm asking. He just looks at me blankly then shrugs his shoulders or no and continues to watch the television. It reminds me of the old joke "what did the constipated mathematition do? He worked it out with a pencil" Reading posts I realise that this is what dementia looks like and it appears to be a normal stage of behaviour . But it's MY Dad and it's horrible. I'm very much on my own with Dad. He doesn't have a diagnosis and I struggle at times, a lot of the time to be honest. It's only going to get worse isn't it. I'm glad I found this website because at least I know everything I'm experiencing has been experienced before. It's the nature of the beast isn't it. Thank you for listening.
I feel for you. My mother isn’t that advanced yet but she’s not who she was. If you want to enjoy the time that might be left to enjoy with your father I would strongly recommend getting some help from social services. They would alleviate the pressure. They have had some bad press and I have experienced some negative communication but I think when you’re needing the support you need they are usually accommodating. My attitude with my mother’s lack of personal hygiene is , if she’s content, so be it. After all we strive for happiness and if happiness is what your father has regardless of hygiene, that’s ok. There are plenty of battles to allow some things to go. Its very difficult but easy to take over and apply our social standards when that might create stress for them. You sound like you are subtly managing the situation well but I understand the want to help maintain hygiene. Eventually you, me, we, he has to accept some form of help. Its difficult but the time left needs to be enjoyed.
 

EJScott

New member
Sep 30, 2021
1
0
Hi Exhausted 55, I can very much relate to your situation. My dad is 87 with Alzheimer/dementia and I have been living with him since my mom passed in 2019. My own husband passed in 2018 so I guess it was meant to be. . . I have two sisters, one who had open heart surgery earlier this year and the other three hours away. Both make every effort to help but understandably that is limited to their circumstances. I do work part time at the moment, still looking for an at home job and I also attend online college. So far we have managed o.k. but lately I see changes in him, memory, sleep patterns, personality and I know at some point I will have to make a decision on becoming his full time caregiver. I love him dearly and though we do have our moments I wouldn't trade this time for anything. My grandfather (his father) passed of Alzheimer's and I remember how our entire family, six kids and my parents made it a point to be there and spend time with him and I cherish those memories. In the words of my dad "everyday is a holiday"