My sister and I help care for mum as well as take care of all their paperwork, housework, garden etc. but it’s becoming increasingly obvious that dad cannot cope much longer. Mum is anxious all the time and all the tactics we used to use to calm and pacify her no longer work. We are about 7 years since her diagnosis and dad promised her that he would never allow her to go into a care home. While none of us want this, I’m not sure how much longer we can maintain the current level of care she has from us all. We are frazzled and it’s sad to see all my dads efforts thrown back at him with each backlash she delivers. In the calmer moments, we of course know it’s the dementia talking and not our lovely mum but it’s so hard. She’s also diabetic so medication is restricted and those she could take to calm her caused problems too. Her sundowning seems to get earlier each day but we cannot even encourage her to nap in the afternoon. They are both 84 and married for 62 years but I’m not sure my dad knew just how bad things would become when he made that commitment she would always stay at home, we tried to suggest respite to give dad a proper rest but he’s putting obstacles in the way of this too. Her decline in the last 2 weeks is phenomenal, she sees me or my sister almost everyday (we both work full time) yet she accuses us of never visiting, again I know it’s the illness but still hard to hear! Not sure what more this awful disease has to throw at us! Is all this normal?
Sudden decline is this normal?
- Thread starter Chaplin
- Start date
It’s very normal. As regards to care, no one wants to go into care but there comes a time when it’s not what anyone wants it’s what is needed is what matter. It’s extremely difficult to provide 24/7 care at home even with someone who is calm and compliant.
Caring does not stop when someone goes into care, it’s just a different form of caring, it’s care that benefits the person with dementia and the family too. I was still part of my husband’s care plan when he went into a nursing home but with their help I was able to become his wife again. Someone I had not been for 7 years.
Caring does not stop when someone goes into care, it’s just a different form of caring, it’s care that benefits the person with dementia and the family too. I was still part of my husband’s care plan when he went into a nursing home but with their help I was able to become his wife again. Someone I had not been for 7 years.
Hi, thanks for your responses. Explored UTI as they have been more frequent but that’s been ruled out. No offer of full blood work up so will certainly ask the question. Mum has had a few different antibiotics of late due to toe infection which Doctors are concerned about because of the diabetes. Unfortunately most of the problems we take to the GP are passed off as dementia progression and never explored further.
Sadly we have had bad experience of the ‘care’ sector and while I try to encourage dad to not lump them all together it is hard when I too have reservations about the quality of care some of our most vulnerable people in society are subjected to.
The Jekyll and Hyde nature of this awful illness is so unpredictable and you feel like you live in a heightened state of anxiety wondering which character will show up at any given time. It’s hard to function at work and give the quality of support both our parents need.
As a family our overriding wish is that mum can stay at home and be cared for by all of us, but we do feel when talking to others that if we don’t accept external offers of help on ‘their terms’ then we will just have to put up with things as they are.
I will ask about bloods and see if this throws up anything else going on. Thanks.
Sadly we have had bad experience of the ‘care’ sector and while I try to encourage dad to not lump them all together it is hard when I too have reservations about the quality of care some of our most vulnerable people in society are subjected to.
The Jekyll and Hyde nature of this awful illness is so unpredictable and you feel like you live in a heightened state of anxiety wondering which character will show up at any given time. It’s hard to function at work and give the quality of support both our parents need.
As a family our overriding wish is that mum can stay at home and be cared for by all of us, but we do feel when talking to others that if we don’t accept external offers of help on ‘their terms’ then we will just have to put up with things as they are.
I will ask about bloods and see if this throws up anything else going on. Thanks.
Yes we all wish that, but it is not always possible. The trouble with dementia is that it takes more and more effort and you have to do more and more things. Eventually dementia can take everything you have and still want more. That is the point at which a whole team of people are needed to look after the person with dementia and they usually move into a care home.
You are going to need help to keep her at home for as long as possible. Grab all offers of outside help with both hands or eventually you will burn out.
I agree with canary @Chaplin
I was convinced I’d be able to look after my dad by myself until he died. I didn’t expect him to live past 87 absolute maximum as his siblings all died in their 70s to mid 80s. He was just over 90 when he passed. This meant that his dementia, which would’ve been manageable for me had he only lived to my prediction, was very much worse than I’d expected to have to deal with.
Getting him a care package of home visits 3 times a day made things much more manageable for me but a crisis and sudden decline eventually meant he needed to be in a carehome. Retrospectively I wish I’d moved him into care earlier, for his sake as well as mine. He was so well looked after there. There was company if he wanted to be sociable (he was only in short bursts) and he could stay in his room if he wanted alone time.
It took time for him to settle but I believe he was content in the home.
Dad had tried to keep my mum who also had dementia at home with him. It was too much for him to manage even though he had help from her sister and myself the result was that mum went from home - hospital - carehome - home -hospital... for the rest of her life. It was an awful time and poor mum didn’t know where she was (even when she was home). I understand your dad not wanting to let go. My dad was the same but exhaustion and desperation lead to this circular nightmare which I now think could have been avoided if the right home had been found at the right time.
Isn’t hindsight a wonderful thing?
I was convinced I’d be able to look after my dad by myself until he died. I didn’t expect him to live past 87 absolute maximum as his siblings all died in their 70s to mid 80s. He was just over 90 when he passed. This meant that his dementia, which would’ve been manageable for me had he only lived to my prediction, was very much worse than I’d expected to have to deal with.
Getting him a care package of home visits 3 times a day made things much more manageable for me but a crisis and sudden decline eventually meant he needed to be in a carehome. Retrospectively I wish I’d moved him into care earlier, for his sake as well as mine. He was so well looked after there. There was company if he wanted to be sociable (he was only in short bursts) and he could stay in his room if he wanted alone time.
It took time for him to settle but I believe he was content in the home.
Dad had tried to keep my mum who also had dementia at home with him. It was too much for him to manage even though he had help from her sister and myself the result was that mum went from home - hospital - carehome - home -hospital... for the rest of her life. It was an awful time and poor mum didn’t know where she was (even when she was home). I understand your dad not wanting to let go. My dad was the same but exhaustion and desperation lead to this circular nightmare which I now think could have been avoided if the right home had been found at the right time.
Isn’t hindsight a wonderful thing?
