Both parents with dementia... advice appreciated

[Linbrusco]

Mum 78 is in end stage Alzheimers.She has been in a care home 3.5 yrs, and for the last 10mnth in Nursing Care.
Mum has lost all mobility, no communication, sleeps majority of the time.

So you can imagine how severe the decline has been this past year.
and yet Dad 82 with mild mixed dementia, who lives next door to me and whom I care for still asks 3.5 yrs later if Mum will be coming home soon

My Mum said many years ago, that she hoped that Dad would go before her as he would not cope... and in a strange way I wonder if this is what will happen. Nursing staff say Mum has a strong heart, good pulse, BP. No other medical matters complicating things. She could be at this level for some time yet.

Otherwise how do you prepare a parent for the death of the other? Can you? Especially one with dementia.
My biggest worry is that I will be dealing with Mums funeral, legal matters all at the same time as dealing with Dad who will be confused or distraught and looking at Care Homes.

 

[Rosserk]

Mum 78 is in end stage Alzheimers.She has been in a care home 3.5 yrs, and for the last 10mnth in Nursing Care.
Mum has lost all mobility, no communication, sleeps majority of the time.

So you can imagine how severe the decline has been this past year.
and yet Dad 82 with mild mixed dementia, who lives next door to me and whom I care for still asks 3.5 yrs later if Mum will be coming home soon

My Mum said many years ago, that she hoped that Dad would go before her as he would not cope... and in a strange way I wonder if this is what will happen. Nursing staff say Mum has a strong heart, good pulse, BP. No other medical matters complicating things. She could be at this level for some time yet.

Otherwise how do you prepare a parent for the death of the other? Can you? Especially one with dementia.
My biggest worry is that I will be dealing with Mums funeral, legal matters all at the same time as dealing with Dad who will be confused or distraught and looking at Care Homes.

You’ve just wrote my story. My dad was in care home 4 years and my mum visited everyday arriving at 11am and staying till 4 or 5 until six months ago when she developed dementia and went down hill fast. I think she’d had it for several years but was good at hiding it. She lives with me.

My dad died aged 81 4 weeks ago on the 4th of November and I haven’t told my mum. I’m busy dealing with finances, funerals, etc all in secret usually on the phone sat in the toilet, with my mum knocking on the door. There’s an investigation into my fathers death so I can’t go into that but, if I told my mum my dad had died she’d be devastated for a few days then she would forget and then she’d ask about him I’d have to tell her all over again. I can’t put my mum through that over and over so I’m leaving her blissfully unaware. The hardest thing is when she mentions him I have to stave off the tears and talk as if he’s still here.

My fathers body has only just been released on Friday so he won’t be buried till Friday next week if all goes to plan and the Priest is available. My mum won’t be going to the funeral, my daughter will take the day off work to look after her and my husband and I will sneak off dressed in black to bury my lovely dad with just a handful of family members. We will have a quiet meal somewhere nice then I will go home and mum will say did you have a nice time and my heart will break again, but I will hold back the tears, smile and say yes. She will never know the pain of losing the man that was her life for 60 years but it’s something I will never ever forget or come to terms with. I understand exactly what you are going through and it’s not easy. Xx

 

[millalm]

@Rosserk For what it's worth I think you are doing the right thing in not telling your Mum about your Dad passing. My Dad died a few months before I realized Mum had the early signs of dementia, she knew he had died, but one of the hardest things I have done in the last 7 years as her dementia progressed is to field her questions about 'Norman'. 'Is he dead?' she asked at one point early in our journey and caught me at a loss for what to say! Leaving your Mum 'blissfully unaware' is the kindest thing you can do for her. I am so sorry, as I know it will be so hard on you to smile and give vague answers to questions that will be upsetting for you. I learned this the hard way so I did not tell my Mum when her baby brother passed away, and I just smile and speak about him in the present tense even though it breaks my heart. You are a loving and brave daughter, your parents would be very proud of you.
@Linbrusco I don't think there is any way to prepare your Dad for the eventuality of your Mum's passing. Depending on the progress of his dementia, sadly, it is a worry you may not have to face. It is possible that he may not have the capacity to be distraught and you may end up facing the same issue as @Rosserk. The morning my Dad died, when I realized he was very near the end I went out to the hall to get my Mum saying 'you really need to come now Mum' . She looked at me strangely and said 'ok I'll just finish this muffin'. Looking back, I realize this was because she was already exhibiting dementia symptoms. I was just so caught up in my Dad's decline that I hadn't noticed. So try not to include this item on the massive list of worries you must have. I will say the same thing to you , you are clearly a loving and thoughtful daughter you are doing your parents proud!
Wishing strength to both of you.

 

[Linbrusco]

Thats the thing... my Dad would still be quite aware of the fact that if Mum passed, I could not hide it.
My sister and I take him once or twice a week to visit.

Where Mum is concerned he has absolute blinkers on and poor memory in the fact that he does not remember her being diagnosed with Leukemia ( slow growing type) had surgery for bowel cancer( caught early) all the years of Mums decline at home.
He will say Yes to your face how Mum is poorly and how he could not cope with Mum at home but yet asks us when shes coming home.

However to Health Professionals he seems well aware of how poorly Mum is too. They said he is cognitive of the fact.
He can remember things from a week ago, but cant remember the fact that Mum has been in care 3.5yrs and thinks its just a few months

 

[millalm]

@Linbrusco I was reading your post to mean that you think it could be quite some time before your Mum passes, so I meant that by then your Dad may have declined enough to no longer be as aware as he is today. Just looking for small mercies, one less thing to worry about on this terrible journey.

 

[DesperateofDevon]

Mum 78 is in end stage Alzheimers.She has been in a care home 3.5 yrs, and for the last 10mnth in Nursing Care.
Mum has lost all mobility, no communication, sleeps majority of the time.

So you can imagine how severe the decline has been this past year.
and yet Dad 82 with mild mixed dementia, who lives next door to me and whom I care for still asks 3.5 yrs later if Mum will be coming home soon

My Mum said many years ago, that she hoped that Dad would go before her as he would not cope... and in a strange way I wonder if this is what will happen. Nursing staff say Mum has a strong heart, good pulse, BP. No other medical matters complicating things. She could be at this level for some time yet.

Otherwise how do you prepare a parent for the death of the other? Can you? Especially one with dementia.
My biggest worry is that I will be dealing with Mums funeral, legal matters all at the same time as dealing with Dad who will be confused or distraught and looking at Care Homes.

I really do sympathise- how can you prepare someone with dementia; You can only take it on a day by day situation. ifind generalisation helps ie oh they are a good age/ actually they are a bit poorly/ ive even said sadly “ well let’s say they aren’t running the next London marathon”
It’s the repeat loop that gets you, with the distress being fresh each time - hence the generalisation!
That’s probably no help at all, but you aren’t alone with this double whammy!
(((((((((((Hugs))))))))))))