Depressed Mum

[Catherine_15042]

Hi! I haven been in here for a while which should be good news but I am concerned about my Mum. She was diagnosed with vascular dementia 18 months ago and has lost the use of her legs so is either in an armchair or wheelchair which she hates. To me she seems depressed although she seems to put in a good show of not being depressed to the staff. She refuses 9/10 times to let us take her out even into the home's garden. She won't join the other residents at a table to eat so has it on her own on a side table and she gets very distressed about not being able to walk any more ( very understandable) and begs and cries for me to take her home. Her whole topic of conversation is about how awful my Dad has been to her for her whole life. She talks quite bitterly about him. I'm wondering if she's clinically depressed or is it just the way the dementia is affecting her? I'm finding the visits very upsetting as sometimes she's so cross with me for leaving her or because she seems so scared and upset. I don't know how to help her. I've tried reassuring her and explaining the situation but that just makes things worse. If I try a quiet non commital approach she gets angry with me and accuses me with siding with 'them' - my Dad and the staff. I would appreciate any advice and support on this situation please.

[jenny lucas]

Oh dear, it doesn't get easier, does it, even when they are in a home!

It might be, you know, that your mum needs to 'vent' about your dad - that things that have burned away inside her for years and years now just need to come out, and maybe your role now is just to sit there and be the recipient of it. Maybe this is her 'revenge' in a way for everything she feels your dad put her through, and now, near the end of her life, she really needs to purge this from her.

As for wanting to come home with you, again, this is very understandable - and impossible. It's all just part of the wretched, wretched 'hopelessness' of dementia, which means that they can never come home again, because the only place that can look after them are the professional staff of a care home.

I face something a little similar with my MIL - she doesn't want to be in the home, she wants to 'come back' to me, and if she did, my life would end and I'd go insane and probably end up crashing the car with both of us in it. It's desperately sad, but there it is. It's because they've lived 'too long'.....

I honestly don't know if it's possible to be clinically depressed with dementia, because it sort of implies that there is a state of dementia that is NOT 'down'. But maybe I'm being too pessimistic. Is your mum on any kind of mood-altering medication? My MIL was put on diazepam when she became very restless, consnatly trying to get out of (and get home!), and the diazepam was aimed to make her 'calmer'. Yes, it's a form of 'chemical cosh' but in the end, isn't it better that they are 'tranquil but not distressed' rather than be agitated and unhappy?

We can't cure dementia, we can't do anything to stop it, or probably anything to slow it down. All we can do is make the 'descent' as easy as possible.....

As for ourselves, because there is nothing else we can do about their dementia, we just have to 'walk away'. It's hard - very hard. But there is no alternative.....

Wishing you as best as can be, in an non-optimistic situation....

[Catherine_15042]

Thank you Jenny Lucas! Your post really says how I feel! I know there is nothing I can do about Mum's dementia or that it's possible for her to come home. I also care for my Dad who has cancer with other ailments so I know the nursing home us the only place where Mum can be looked after. I suppose I'm suffering from some guilt as well as she seems so sad & lost.
I will talk to the nursing staff and see if Mum needs any 'calming' medication but I think I need to come to terms with the fact that this is a downward spiral for my Mum!
Thanks again.

[bowlingbun]

If mum is getting really distressed and angry, then there is a good case for some gentle medication to help keep her calm. I had some of after my husband died, it just takes the "edge" off the emotions if she has a very low dose. However, I have had several relatives who have "rewritten" years of history about their married life. In one case an unhappy marriage ended up like a love story to over write the unkind treatment one had given another. In another case, the dead husband was blamed for absolutely everything that had happened, even when I knew the complainer was actually responsible for blocking things! I don't understand this, but it happens. Both these people were elderly, but without dementia.
Are you getting any support with dad? I know how tough it is when you have parents with needs in two different places. It's really important that his care package allows for you to have some "me" time.

[Catherine_15042]

Hi Bowling Bun
I do have support for Dad in the form of Carers twice a day and he works hard at being independent but he needs increasing support & it overwhelms me at times. I feel very guilty about the fact he makes me feel frustrated and annoyed at times. I don't think I show it but in my head I'm screaming. I feel very unkind but I can't seem to make myself feel good about helping him other than it being my duty. He's a decent man and did his best as a father but I just don't have a close bond with him and I don't know why. It's just as it is! I try to empathise with his situation and I do do everything I can for him but I just feel trapped and bored by the situation. I won't abandon him & I will not let him see how I feel but I feel so awful feeling the way I do. I just wish I felt closer to him and could do what I do for him with joy in my heart.
I would hate if he felt a burden because that would be unkind and cruel. Maybe coping with 2 parents in a needy situation has taken the spring out of my step! I just feel so sad about it all.

[Elaine]

Hi Catherine
Have those twice daily carers come through a Social Services Needs Assessment for dad? If his needs are increasing you should ask for a review of his assessment and have you ever had a carer's assessment for yourself?
Dad does receive attendance allowance? You cannot and should not be caring on a daily basis without some kind of a break. Especially as you are overseeing Mum's care as well. My Mum has been in a Nursing Home for almost three months now and she has reacted in a similar way. She is immobile so is hoisted into a chair or wheelchair and also refuses to join other residents unless I take her. That has got something to do with her very poor sight too. My Mum is also deteriorating mentally, so I do know how you feel. If I were you I would up Dad's care package as much as possible and the way forward there might well be through your own Carer's assessment. We all ride the roller coaster of emotions, and resentment, guilt and utter weariness are most certainly in the dips of the ride.
Elaine

[bowlingbun]

Catherine, my dad had prostate cancer, left it too late before going to the doctor, sadly. I never doubted for one moment that he really loved me when I was growing up. As his cancer took hold, after he retired, he gradually became more distant and more introverted. I took him to the day hospital one day, when there were transport problems. He said it was very good of me, I said it was payback time for all those days he'd taken me to school, and waited to pick me up afterwards, after special events - I was always doing after school activities. I was stunned when dad said he didn't remember!! Perhaps it's nature's way of dulling feelings and emotions towards the end?
Can I ask if anyone has told you how much longer they think dad has to live? This would really help you pace yourself and develop an action plan. I'm a great one for plans and lists, it's my way of dealing with things. I hope this doesn't distress you too much by asking the question. I prefer to know what's going to happen, rather than bury my head in the sand.
I understand the boredom issue, my son is 37 but brain damage left him with a mental age of around 3 for many things. What time do you get to do something which really interests you? When I was disabled after a car accident, I did family tree research. Alternatively, would you like to do an educational course?

[Catherine_15042]

Hi Elaine
We've recently had an assessment and Dad has a Carer's visit twice a day and the time with the carer has been increased. That has helped as that means Dad has a shower every morning now as well as his breakfast made for him & the Carer tidies around as well. The carer used to come at dinner time & prepare the meal but Dad now prefers him to come later towards bedtime. He finds the help with his catheter night bag and bed time help more beneficial than evening meal time. Dad manages a microwave meal himself or if I'm there I will cook for him. Dad is getting more & more unwilling to go out very often. He used to come to me and have lunch or dinner and my daughter would give him a lift home but that's fallen by the wayside now. So I now have to go to him which is time consuming but alright. I just worry about him becoming socially isolated. I can only keep trying my best I suppose!
Thanks for your support.

[Catherine_15042]

Hi Bowling Bun
Thank you for your support!
Dad's cancer is slow growing apparently and he isn't going to have chemo. He has told the doctors that he doesn't think he'll have any more ops either. No one has spoken of a timescale. He had a bone scan and there was no evidence that it had spread which us excellent. He gets very tired but that could just be age as well as the cancer. I have suggested that we go back to the GP to have this checked but he's not keen! I'll keep suggesting it!
I'm just about to start some volunteering work at my local maternity hospital so that will be at the other end of the age range and somethings away from home that I'll enjoy!
I just want to scoop up my parents and make things better. It's hard watching your parents get very old and frail. My Dad has become very noticeably frailer since Mum went into the nursing home. The stress of it all much be so hard for him. I nursed my husband at the age of 54 before he died of cancer so it fills me with dread to maybe have to do it again with my Dad but I'll try not to jump too far ahead.