Mum is declining and I'm scared

[Margarita]

Lovely to see you on line Maggie. How are you? I hope Joanne does`t mind me butting in.

June July worse mouths for me those anniversary dates Son Birthday.

I sometime forget try to suppress it all.
I came on talking point notice from reading my last post that its the same time of the mouth that I last posted on Talking point but was 2 years ago.

Talking point is still great site for giving me clarity of thought . Grief can stress me out mentally that I lose clarity of thought .

Hope life is dealing you loads of positive new experiences even with losing your husband .

My mother is the same - once the switch was made to thickened fluids, she was fine. No more coughing and choking. /QUOTE]

Glad they found a way to make your mother feel more easy to swallow, eat .

Gosh Joanne its been a long Journey for you and your mother with Dementia .

When with think the ending near the child within us comes out some of us still don't want them to leave us or some of us do but we are still filled with fear of the ending .

Then we still Grieve even though we have been doing the long goodbye for years while our love ones where alive .

better stop don't want go depress any one

 

[Izzy]

Hello Maggie. How lovely to 'see' you again.

It must be a hard time of the year for you. xx

 

[Johann]

The aunt

I had so much upset when my Dad was ill I knew I couldn't take it for several more years with my aunt when my Mom fell ill. My aunt even went ahead to make my dad's final funeral arrangements with my mom without my siblings and I. She says upsetting things all the time and wants to take over. She has always believed she was the family leader.

 

[LYN T]

Hi CJ

I'm glad that the thickening seems to be working; it's so scary when changes happen isn't it?

It's a bit strange because, as Pete has gone through each downturn, I've felt scared-then I've sort of accepted that things are as they are, then another downturn happens and the fear grips me again. I've sort of got used to living in fear.

Whatever happens you are your Mum's Champion; you will ensure that she will be pain free and comfortable, and make only the best decisions.

Enjoy those smiles

Take care

Lyn T

 

[DeborahBlythe]

I'm very sorry to read that you have been feeling down and scared Joanne. You are always a tower of strength for everyone else. I hope that you are finding things a bit easier now. Your mum still smiles so that is a big plus, and you are a very attentive and loving daughter to her. I'm sure on some level she knows that.

As for your aunt, well I think there is a book in there that should be written, maybe after she pops off. x

 

[Canadian Joanne]

I've bounced up again a bit, as far as my mother goes. I cannot do anything about so I have to learn to cope (endure more like) as best I can.

We've had a really busy social summer so far and it's not ending anytime soon. Weddings, bridal showers, baby showers, birthday parties and an anniversary funeral mass. Most of these occasions are happy and I've been enjoying them but it makes it difficult for Rudi & I to have our alone day. We try to set aside Sundays as the day that is just for us - no social engagements. We might visit my mother but that's it. This year, everything seems to be on a Sunday. Well, one wedding isn't. Once the summer is over, I'll be able to relax a bit.

 

[Canadian Joanne]

Just an update - my mother has starting coughing again. We're waiting for the therapist to come in and do a swallowing assessment. For now, she will have her fluids thickened even more - to what we call honey thickness. I also recommended that the fluids be given to Mum on a spoon, as I find she's more likely to swallow right away if it's on a spoon.

She has no difficulty with food, although certain foods like rice are not given to her. She's still on a minced diet and still really enjoys her food. It's simply the fluids that she seems to be less interested.

Otherwise, she's fine. Her skin is in good condition, no pressure sores and that indicates the level of care she gets, as she has been in a wheelchair for 8 years now.

 

[BeckyJan]

Good to hear your update but still sorry to hear about your Mum's present stage. David survived for around 18 mths or more with pureed stuff, slightly thicker than honey in his case.

Thinking of you because even though your Mum seems to have plateaued its not easy for you watching and caring.

 

[BR_ANA]

My Dad was diagnosed with Alzheimer's 5 months after we lost Mum to COPD ( another truly awful condition ) that was 4 and a half years ago. Up until January he was at home, with night time carers because he wandered at night. Many a time he would knock on my door at 2am!!! He had a fall in January and was admitted to hospital for 9 days. The deterioration was rapid, and we ( my 2 brothers and I) decided a care home was the best way forward! The staff are lovely, I cannot fault them, it doesn't alleviate the guilt though. The last two weeks have seen his decline, he seems to sleep all the time, whereas before if he had 3 hours sleep it was a miracle. Today his GP phoned me and told me it was the beginning of the last phase of this awful disease, his swallowing was not good, and he is being fed with puréed food. He is so very frail, he can't walk unaided, he's incontinent. All I've been able to do today is cry! Fat lot of good I am. I sat with him this afternoon, he was mostly sleeping, he awoke briefly, but he didn't know me, I dont think he was even aware I was there. Im scared of not doing enough for him, of having to watch the deterioration and mostly of failing him

Hi Tessie, welcome to TP.

I am sorry about your guilt, and for your dad fast deterioration. Can you talk to GP if your dad has some infection or some new medicine (that may cause worsening conditions - I just remember of UTI and pneumonia. However my mom had worsened a lot with a different pill for allergies)

 

[Quilty]

Sending you strength

Hi Joanne, so sorry that you are finding things so hard at the moment. All I can suggest is to live in the moment. We often worry so much about what might be and it never comes the way we think. Tell yourself if you have had the strength to come this far you are much stronger than many - all the invisible people who should help to care but dont. Or worse criticise.

Sending you a big hug and burst of positive energy to keep you going. Find one thing a day to be grateful for even if its a bird or a cup of coffee. Reality for all of us is hard.
love
Quality

 

[Babymare01]

My mother was diagnosed with AD 13 1/2 years ago. I have been a member of TP since 2005 and have recorded our long and tumultuous journey here ever since.

Mum has been in a wheelchair since the fall of 2006. She doesn't speak any more, has been doubly incontinent for years, has to be fed etc. But she has always had a ravenous appetite and I say she eats like a shark.

Last weekend, I was approached by the nurse, who said that Mum has started choking when drinking. She asked me if I wanted to thicken her drinks (I always visit at mealtimes so I can feed Mum) and I said I would try without thickening first. The milk and juice were fine but Mum started coughing like mad on the water. For some reason, water is the easiest thing to choke on. I added a little thickener to the water and she was fine.

They then did a 3 day trial and the dietitian has determined that Mum's drinks should be "nectar thick". This should eliminate any choking, at least for quite some time.

This is not a big deal and is not an unexpected development. But my mother's decline for the last few years has been how she has lost her ability to speak. She hasn't really had any physical changes, as she was already in a wheelchair etc. I am finding it extremely difficult having to acknowledge this physical decline, because it means more will come. I'm not ready for it.

I'd been finding visiting my mother more difficult in the last year. I was feeling very low last summer from a number of causes and ended up seeing a counsellor. He said I was burned out. Things are better now but just as I was starting to really feel myself, this comes along.

I AM scared and a little in denial. I know what will come eventually and can't stop it. I'm a bit of an emotional mess right now. I have no choice, I have to accept it but oh how I want to scream and rave at the injustice of it all.

Hello there

Like you Im scared to. Scared of next step with my mum. I have sat in my car after seeing mum and screamed at the sky calling god evil for doing this to nice people. Just sat there screaming at the sky. Did it cure mum? no. But it helped me get so much pain and stress out of my body. Silly thing but it helped. Easy to say but so hard to do but stay strong hun. Talk to people who understand and don't be afraid to rant shout and cry xxxx