Feeling a bit overwhelmed

[KathrynAnne]

Mum has been back home with me for 2 weeks now after being in intermediate care. There has been such a dramatic change in her from before she went into hospital back in November. She has lost all mobility, needs me to give her all food and drinks and sleeps much of the time. We have had to move her from an upstairs bedroom into a downstairs room.
I have to say the help I have had from the GP, Admiral nurse, district nurses and social services has been brilliant though. I feel lucky that I have had lots of support especially after reading some of the posts on here.
We have 4 visits a day for personal care. Mum is self-funding but Social Services pay for 1 of the carers as she needs double handling. We have been supplied with a hospital bed which was delivered this morning. Mum is in it now and looks so much more comfortable. District nurses are coming in every other day as Mum has a pressure sore. They are sorting out different inco pads as Mum used to use the pull-ups which are no longer suitable. I’ve also put a DNAR in place and had a key safe fitted. My head is in a whirl! I’m sure things will settle down and I’ll get used to the new normal but to think Mum was going to a day centre, memory cafes and the hairdressers just 2 months ago and is now completely bedbound is a lot to get my head around!

 

[karaokePete]

That is certainly a major change in a short period and I wish you the strength to cope.

I'm glad you have good support from the services.

 

[chickenlady]

My Dad went from attending his dementia cafes and able to walk for short distances in early October, still playing his organ and reading music on 4th November to dead on 28th November. We were started at the sudden deterioration, from eating soft food to spitting out even the tiniest of lumps to suddenly stopping eating all together. With hindsight and the power of 6 weeks to think, I'm so glad it didn't drag on any longer. Keep talking on here, thinking of you. xx

 

[Grannie G]

I`m not surprised you're feeling overwhelmed @KathrynAnne , your mother`s downturn seems to have quite dramatic. Not everyone has a gradual decline but such a dramatic decline is often caused by some trauma.

It`s wonderful you have managed to get such good care in place. I understand how distraught you must be and can only hope your mother is painfree and peaceful.

 

[KathrynAnne]

My Dad went from attending his dementia cafes and able to walk for short distances in early October, still playing his organ and reading music on 4th November to dead on 28th November. We were started at the sudden deterioration, from eating soft food to spitting out even the tiniest of lumps to suddenly stopping eating all together. With hindsight and the power of 6 weeks to think, I'm so glad it didn't drag on any longer. Keep talking on here, thinking of you. xx

Thank you for your reply. It must have been a really difficult time for you but also a blessing because seeing someone slowly deteriorate is heartbreaking. Mum’s eating and drinking is definitely getting worse. She doesn’t seem to recognise what food and drink is any more. I tried her with scrambled eggs tonight thinking it would be easy for her to eat but she just moved it round her mouth and spat it out.

 

[Bunpoots]

I’m sorry you’re having to face this @KathrynAnne but it does sound as though you’re managing to keep your mum comfortable and have good support.

I know how hard a sudden deterioration is to come to terms with. It happened to my dad in summer. In June he was up to all sorts of mischief and by September he could hardly stand most of the time. In retrospect I’m glad he didn’t linger too long.

(((Hugs)))

 

[KathrynAnne]

I’m starting to get used to all the Carers coming and going. It’s a great help not having to worry about the personal care side of things. I’ve rung the memory service today and someone is coming out to do a review next Wednesday. Mum’s on liquid memantine at the moment but I don’t feel there is much point in continuing to try to get her to take it every day. It is hard enough trying to get her to eat and drink things she likes.
Mum has always suffered from constipation but over the last few days she has been really loose. I’m not sure whether this is because of what she is eating (mainly trifles, yogurts and rice pudding) or if it’s the overflow problem which some people have mentioned. I will probably need to speak to the doctor if it continues.

 

[Bunpoots]

I’m glad you’re getting good support from the carers. I hope your mums tummy troubles sort themselves out soon.

 

[KathrynAnne]

Just a bit of an update. A lovely gentleman from the memory service has called today. I was expecting him to tell me to stop giving Mum the memantine but he advised to keep adding it to her drinks as long as I can manage to. He said any slight interaction my Mum has may stop if the medication is discontinued so I’m happy to carry on.
We’ve also had an airflow mattress delivered which the district nurses have put on Mum’s bed to further relieve her pressure points.
One of my good friends is coming to stay for the night on Saturday which will allow me and my husband a much needed night out

 

[crazyerduck]

Hi @KathrynAnne, sorry to hear about your mother but really glad you have gotten the support from the various services and have also great friends who have spotted your need for some time out! The decline can be really rapid and it is so sad. My grandad went from being able to stand up (generally needing help from one person) to being completely bedbound after he went into hospital for an infection. You can only do what you can and sounds like you are doing a grand job. Enjoy your night out on Saturday, sounds like a well deserved break!

 

[KathrynAnne]

We seem to have got into a steady routine now. The carers call 4 times a day and the district nurse comes every other day to change the dressing on Mum’s pressure sore. It is getting better which is good news. I have to get up every night though as Mum’s position needs to be changed every 4 hours. There is a roaming service and I could have arranged for a nurse to come in to do it instead but we have 2 dogs which would no doubt start barking and wake everyone up anyway so I opted to do it myself.
Mum’s diet consists of a yogurt for breakfast, a complan milkshake for lunch and a trifle for tea and a few small drinks throughout the day. We still get a smile every now and again but she doesn’t seem to have any comprehension of where she is or who I am.
When Mum first came back home just after Christmas I thought she wouldn’t be here much longer. However now she seems to have stabilised and I can see that she may well be with us for months if not years. I hate the thought of losing her but at the same time she doesn’t seem to have any quality of life. It is such a cruel illness.

 

[KathrynAnne]

Mum has deteriorated some more. She hasn’t eaten or drunk anything for 2 days. She won’t swallow anything. On top of this she is constipated and having to endure enemas and being manually evacuated. I feel that she is in pain now so have given her Calpol and will ring the GP tomorrow. Does anyone know at what stage they decide to give end of life care? I think she is at this stage now so will discuss this with the GP. I’m feeling very down. It’s so awful to watch Mum going through this.

 

[nemo57]

I just read your posts, I don't have a single answer but I just wanted to say you are doing a great job, I'm so glad you have posted at this difficult time.
I feel tearful as I identify so much with your words and can feel your pain. Thinking of you and your mum.

 

[Duggies-girl]

Mum has deteriorated some more. She hasn’t eaten or drunk anything for 2 days. She won’t swallow anything. On top of this she is constipated and having to endure enemas and being manually evacuated. I feel that she is in pain now so have given her Calpol and will ring the GP tomorrow. Does anyone know at what stage they decide to give end of life care? I think she is at this stage now so will discuss this with the GP. I’m feeling very down. It’s so awful to watch Mum going through this.

Oh @KathrynAnne so sorry your mum is going through this stage and very sorry that you are having to watch her, it must be very hard. I don't know anything about end of life care but I think a chat with the GP is a good idea.

You have been a wonderful daughter to your mum and could not have cared more than you have. I hope things improve for you and your mum.

 

[canary]

Yes, please get hold of the GP. If the GP thinks that she is at end of life then they can order the meds needed to keep her comfortable - the so called "just in case box" and can refer her for palliative care so that nurses can assess her, give her medication etc as and when needed.
(((((((((hugs)))))))

 

[Bunpoots]

@KathrynAnne I’m sorry to read that you are having to go through this with your mum. Sending (((hugs))) and strength to see you through.

 

[tishtosh18]

Yes, please get hold of the GP. If the GP thinks that she is at end of life then they can order the meds needed to keep her comfortable - the so called "just in case box" and can refer her for palliative care so that nurses can assess her, give her medication etc as and when needed.
(((((((((hugs)))))))

I empathise completely and think you are. Rey courageous. I decided that mum should stay in a nursing home but I visit every day. Like you my mother refuses all food and must drinks ., she is bed ridden.. drinking makes her choke.
I believe all sufferers are different although doctorvtold me Monday it’s a matter of weeks.
I just want her to be pain free. I hope this. “Box” will be delivered if she needs it.
I know my mum told me several times in the last 6 months that she is ready but still it’s tough now. All I do is hold her hand or stroke her

 

[KathrynAnne]

Thank you for all your lovely replies. It really feels like I am talking to close friends when I come on here. The doctor has been today and prescribed the end of life pack which I have picked up this afternoon. The district nurse has called round too but hasn’t injected Mum with the morphine yet as she looks quite comfortable. I can ring any time day or night if I think she needs some though. The doctor said Mum might not last through the weekend which came as a shock but I know from other posts some people hang on much longer than expected. Thanks again everyone. Your words are a great comfort to me xxx

 

[charlie10]

so sorry KathrynAnne.....thinking of you x

 

[canary]

((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))) @KathrynAnne
If you are in any doubt call the district nurses - it will take them time to get there even though they are fast 15 - 20 mins when someone is in pain is a long time.
You will know when you are getting to the very end as her breathing will change.