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Back to square one

Sparx

Registered User
Mar 22, 2020
22
Hello to all on the forum
Perhaps I should lay down some back ground why I am here.
My 89 year old Mother was first diagnosed with Vascular Dementia approximately 3 years ago.
The problems Dementia brings divided my relationship with some family members due to a difference of opinion about what level of Care we should look at.
I made a decision to take unpaid leave from my employment to provide the Care I felt she needed at that time.
Over an 8 month period i tried my very best to cope but eventually realised I was Mentally worn out.
During that time I did seek out help and Care helpers were provided through the Borough Council.
Some of the Carers were better than others but it was very random who came and if they actually turned up.
Mums relationship with some Carers was very rocky as she felt that when being Washed and Dressed some were rough.
Mums symptoms increased quite quickly as she also suffered with Mini Strokes and Double Incontanance which in turn resulted in her being Hospitalised due to her contacting a UTI.
Whilst in Hospital I made the decision to myself that I could no longer cope and sought help from the Appointed Social Worker at the Hospital.
The process began for me to convince the Social Workers that Mum required a placement in a Residential Care Home that would fit her budget of State Pension and her small savings.
If I’m honest this quickly became very stressful as it seemed the Hospital Social Worker felt that she would like “to see how it goes” if Mum could cope in a rented 1 bedroom flat.
It was very clear to me at the time that this was a cost cutting act and I made it very clear that I was not prepared to risk this and sought a meeting with Social Workers and Senior Hospital Care Staff.
After 8 Weeks Hospital Care Mum was finally awarded a placement at Care Home and I breathed a sigh of relief.
The Placement is run by local Borough Council and Mums State Pension and a gradual reduction in her savings is covering this expense.
The CH is a 20 min drive away so have been able to visit regularly.
Like all Dementia sufferers Mum has good days and not so good days.
If I’m honest Mum is unhappy there and its upsetting to see but I keep telling myself I can’t do anymore other than take her some of favourite foods and visit three or times or so a week.
All of this allowed me to return to my Full time Job for the last 20 months.
For the last 2 weeks I became concerned about Coronavirus and the impact it would have on poorly funded C/Homes.
After lengthy discussions with my younger Sister it was decided to temporary remove Mum from her placement and return home with me as her Primary Carer.
It’s been very difficult to talk to various organisations about getting products that would help my situation but I’m quite well set up from previous stint as a Carer.
I have contacted her GP and have 1 months supply of Mums extensive Medication.
I will of of course be posting in due course for advice on other matters but for now here I am back to square one.
 

canary

Registered User
Feb 25, 2014
12,892
South coast
Have the care agency agreed to take you on?
My OHs care agency has said that at some stage there may not be the support, although they will continue for as long as possible. They couldnt guarantee which carer would be coming, or exactly when, though.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,165
Yorkshire
hello @Sparx
a warm welcome to DTP
it's good that you have joined this helpful and supportive site
I really hope you have hands on support from carers and your sister as you will need as much help as you can get
Admiral Nurses are also there to support carers
best wishes to you and your mum
 

Sparx

Registered User
Mar 22, 2020
22
Hi canary
I have not contacted any Care Agency..my intention is to self isolate and try to ride this uncertain time out.
I have received 1 call from a Dementia Society to ask about Mums health regarding Coronavirus .
I explained both of us are not showing any symptoms.
I explained my difficulty in purchasing Incontanance products from local supermarkets.
I was told 2 packs of pads could be provided but I would have to pick them up from our local health centre within an hour as that department would be closing and was uncertain if it would be open in future.
I do have some Incontanance pads currently but am concerned about future supplies.
 

Sparx

Registered User
Mar 22, 2020
22
Hi shedrich
My thoughts are to reduce Mums risk to Coronavirus as much as possible.
During lengthy discussions with my Sister we decided that with our previous experience of being Mums Carers we will cope.
Nearly 1 week in there have been no dramas or situations that have been unexpected.
I suppose due to my regular weekly visits to her whilst in the CH have opened my eyes to what situations are in front of us.
I also was taking Mum Home every Saturday to give her a break from CH and making her favourite meals.
Initially the CH Manager was uncertain on Mums reaction to me taking her home every Saturday but it’s worked reasonably well these past 2 years.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,604
Nottinghamshire
Hi @Sparx . I used to get dad's incontinence products from Incontinence Choice online. They generally delivered the next day although I'm not sure how things are at the moment with all the panic.

I hope things go smoothly for your family. Best wishes to you all.
 

Sparx

Registered User
Mar 22, 2020
22
Hi Bunpoots
That’s a good call..I have used them for bedding Incontanance products twice this week
The incontance pads that were being used at CH are a pad which is inserted into her underwear which I purchased under their instructions to be close fitting.
Mum also has a double hernia that makes her tight underwear uncomfortable.
When I used to take her home on a Saturday I used Tena plus pull ups that were easier for me to use on her and she felt more comfortable.
Again because of low stocks in Supermarkets these have been difficult to purchase in XL size.
 

Sparx

Registered User
Mar 22, 2020
22
Before I temporarily removed my Mother from her CH I asked the Day Manager if it was possible to borrow the Hospital Type Bed and Air pump Mattress that Mum used whilst there.
The Day Manager replied that I would need to contact Mediquip who would supply one for temporary use at home.
I contacted them over a week ago and was told it would need to be authorised and I would be contacted ASAP.
During this period of waiting it became increasingly more difficult to persuade her to stand up so we could transfer her into her her bed as her mobility is poor.
My Sister has been assisting me in personnel Care for Mum on a daily basis but sometimes it’s difficult for Mum to comply due to being very confused on some days.
Despite this my Mother is washed and changed at least once a day and sometimes 3 times depending on her being compliant and my Sisters availability.
At the CH a lifting device was used when Mum was non compliant in standing up.
During the past week I have surprised myself how using some pieces of furniture have assisted me in encouraging my Mother to stand up from her Chair Recliner.
Placing an Armchair in front of Mum gives Mum the confidence to stand up and can support herself once standing so I can place a framed Commode stand under her..
I recently agreed to attend a very basic group course at a local Hospital titled Understanding Dementia in which basic techniques were shown and everyone was encouraged to exchange experiences and what worked for them in various situations.
Probably the most important part that I learned was being patient and talking to Mum in short sentences that were easy to follow and try later if things are not going to plan.
I have been trying to contact Mediquip since Friday last Week but only getting an answerphone and a message saying ring this number in emergency. This emergency number was same number I had been ringing all along meaning I thought I was in a loop.
Finally today Mediquip called me and it seems the wheels are in motion for Mum to receive her much needed Hospital type Bed and Air Pump Mattress.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,604
Nottinghamshire
It sounds as though you’re coping well @Sparx . I hope the bed arrives soon.

Regarding inventive ways to help PWD I used to use an inflatable footstool and his Zimmer frame to get my dad off the floor when he fell. I was lucky he never hurt himself when he did.
 

Sparx

Registered User
Mar 22, 2020
22
For the last month I have noticed a rapid detoriation in my Mother .
Her behaviour bounced from crying every 5 mins to hysterical laughter then a vacancy in her surroundings and sometimes aggression.
It’s been so tough these last four months trying to cope and just scraping by with my emotions in tatters.
It feels like I have begun to mirror the persona of the PWD I was caring for.
My Mother had a seizure or stroke today and was taken to hospital by an ambulance.
I am at a crossroads now , i have spent 4 long months caring and protecting her from Covid19 in Care Homes , and today it feels like i have run out of steam .
I hope I can stoke up the coals tomorrow to make the right decision for us both.
 

Lynmax

Registered User
Nov 1, 2016
506
If it helps, in my experience care homes have now got to grips with reducing infections due to Covid 19 so you might want to reconsider that option. My mum went into hospital on March 22nd after a fall at home, it was apparent to doctors, us and a newly appointed social worker that she could no longer live on her own. As we were unable to get a committment of increased support from carers who went in at weekends, Mum was discharged at the end of April into a local care home, one we chose although we were unable to pre visit.

She had to have a negative Covid 19 test and was then supposed to spend 2 weeks in isolation but the home were not able to do this as mum liked to walk around! Since then, all care staff are tested each week and residents every month. PPE is readily available and there have been no cases of Covid 19 since mum moved in. The most recent round of testing was last week and I got a phone call telling me the results over the weekend.

So I think care homes are now much safer places to be and I'm really happy with Mums care, even though she might not be so happy!