Just need to talk

I just need to talk somewhere anywhere to get this off my chest. I just feel so bewildered and lost currently. Dad left hospital for Nursing Home as Mom still struggling from post covid complications & needs 24/7 nursing
Mom 79 & today walked 2 miles home upset and confused after seeing the state of Dad there. They had left his cathetar open so it had leaked on the sheets & they were wet & Dad. My dad cannot feel hia legs anymore or move them He had no call button either. Mom went to the staff in the end but no rush to change him. She left at 1pm & he had had no lunch offered or a drink when Tea Trolley came round.
She met with the GP ( Nurse Practicioner) who had gone to see Dad. Prescribed his Oramorph as he hadn't been given any in 5 days since the move They had stuck 2 pain patches on when supposed to be one on only.. His Cancer in bones, Bladder, Prostrate. He has ulcer on scrotum thats so painful cannot wear PJ bottoms.
Mom so upset & going back tomorrow to ask questions.

Im angry and upset re this but even more so because I ring my sister who is 5 mins away from them , Im hr & 1/4 away i do not drive.. She bluntly says I dont want to talk about Dad etc she isnt ready & she needs a break. She refused to go in when both had covid. I went and stayed 6 days to nurse both of them before both went into hospital.
The problem is she never is or thinks her sibling ie me, may need some moral, emotional support.
The other Sister 20 mins from mom not been for 4 mobths or rang.
I feel so isolated re trying to listen support mom each day with phone calls etc. I just want to scream Its not fair! Why ket  Dad suffer so? His in a small room hardly any space and in wet sheets. Im going to have to call them now and say something. Yes know his terminal, we have no idea how long.....Its all ao hard and im trying my best but feeling its not enough

Im sorry for ranting I needed to speak out

Oh sax, this is terrible news.

Firstly you need to write a letter of complaint to the head of nursing involved with your father's care and alert the GPs concerned.
e.g. send copies to GP, District Nursing Manager (if they are involved) any Nursing Home Manager (monitored by QCC), and Social Services (Your father would be classed as a vulnerable adult).
GPs and District nurses have different management systems.
The GP's Nurse Practitioner is employed directly by the GP.
All have a legal duty of care. This is not acceptable.
Don't rely on emails (they mysteriously vanish).
Don't leave it with a phone call (messages often don't get passed on to the right person - if at all).

It is difficult to write coherently when you are (quite rightly) so upset, but write down your points as objectively and honestly as you can.
There is absolutely no excuse for neglectful nursing care.
There is also the very alarming fact that your father was over dosed with his pain relief after almost a week without any.
Again that is a serious lack of care and needs to be flagged up to the nurse manager. It would be classed as a 'near miss.'

Somebody (nursing wise) should be making sure that your father is being turned frequently.
Catheters can leak and overflow, but again, someone should be checking and if there is a blockage, the catheter should be replaced.
There is no excuse for him lying in wet sheets, the acid from his urine will cause additional burns.
Pressure sores are a problem in the elderly with fragile skin. My relative had a sore in this area, and it took almost 6 months to heal. I made sure I badgered everyone to keep his skin dressed and dry. Ask the staff if you can bring a couple of 'Sheepkin patches' in. They can cushion the skin nicely from the cold sheets. You could label them if they launder them in the home or offer to take them home to launder. Some use foam bolsters to help keep the person on their side to relieve the pressure on their sacrums. Ask if you can take some medicated powder in for him. I know it's out of fashion at the moment but it's good for mopping up dampness whether it's due to sweat or something else. See if there is a bed cradle so that the top sheets aren't getting wet and tangled up around him. It will also give the air chance to circulate around his legs.

District nursing staff should be able to co-ordinate his home care to include his terminal care.
Are Macmillan nurses or any 'end of life' services in place?
Your father should have a Care Plan in place. You need to find out the details of it.
Has your father been allocated a Social Worker? There should be someone who can help you with transport costs, particularly at this very stressful time.
A social worker will also be able to put some home care help in for your mother to help organise meals etc.
Most hospital or voluntary groups like Age Concern, have volunteer drivers who may be able to drive you both to see your father.

Unfortunately within families, there are always family members who cannot accept how ill their relatives really are. They wish to remember them as they used to be. It's their way of coping. They try to block everything else out. If they accept how much you are struggling, then they would have to accept the reality of how bad things really are. It doesn't help you. It isn't fair.  Again, I know from personal experience how painful and lonely that can be. It's exhausting trying to hold everything together.

Please write things down sax. If it's written down, then each individual point that you make MUST be addressed by management. You are only doing what's right for your parents.
Please let me know tomorrow how you're getting on. I shall say a prayer for you all tonight  

Oh Sax you poor poor thing, I wish I was able to give you a big hug. What a horrendous time you're having, it's brought me to tears just reading your message.  Totally agree with B4P, the current level of 'care' sounds completely unacceptable, and a written complaint would have more weight than a phone call.  However for the immediate future, like B4P, I'm wondering if Macmillan could be contacted for support and/or if a hospice place would be available?  I'm not familiar with the health systems in England, but I'm aghast at your experience, it sounds like a complete and total nightmare.

I really don't know what to say about your siblings. I totally understand how your situation is made all the more stressful by the lack of support you're getting. I just hope that whatever happens, you'll find comfort one day in knowing that you did everything you could as a loving daughter.

I'll be thinking of you Sax, and please do let us know how you're getting on xxx

Contact a priest or Vicar Sax, either to visit your dad, or just yourself if he doesn't want that. . They are great at listening and can really help in getting things off you chest. Personally, as a Catholic, I pray a lot and find great comfort in it. I deal with Head Office and it helps so much.

Oh this is very hard reading so it must be a massive stress and upset to actually live with this terrible strain of your dad's ill health.

I agree with B4p's advice but would also suggest:-

Perhaps contacting your local MP for help on this matter as your dad deserves so much better care.

Maybe pay a visit to, or ring, either a Citizen's Advice Bureau or Samaritans as they should be able to point you in the direction of an organisation that can help sort out this terrible situation.

Thoughts are with you and I hope things improve.

CC, Tango, B4P and Jingle thank you so much for your kindness and advice.

I did call the home & spoke to The Clinical Leader.
They did answer some of my concerns. However Im following B4P's advice and writing the old fashioned way to the Home, Social Services & PALS too.

The Team Nurse advised,

Dads cathetar had been accidently left open by carers attending for a short time. My response when did thet do this? Why did they not check? Mom was with Dad for an hour.
When Mom left the Home Dad was moved to the Lounge area ( How Im not sure as he is bed bound?)
They were expecting a new mattress a lower bed too. Dad was placed back into his new bed with fresh sheets.
I queried why was this not done when mom reported wet sheets?

Re Lunch, Advised Lunch starts to be served from 1pm not noon. Its a protected meal times & relatives have to leave. The Nurse advised some family members get upset by how their loved one now eats maybe spoon fed or messy. Im aware Dad is using a plastic beaker for the last 3 weeks. Mom very upset re this. I understand its safety re being burnt if tipped drink from open cup on themselves.
He has poor or little appretite. I asked what amount he ate? They didn't comment. I asked also about the Fortisip drinls/Mooses, again not written up. You see the pattern here? I dispair of the same pattern of reasons why its not done.

The Mattress Mom said on floor and staff walking on are actually Crash Mats. They are not using bed rails currently as feel dangerous and Dad could injure himself climbing over. I advised in Hospital Dad had rails up . Nurse advised they are getting to know Dads care needs and how they nurse him.


Dad was sent to the Home on Friday at 4pm. At 5pm they advised my Mom it was an unsafe discharge. They had called for a non urgent ambulance ( 4 hr wait or more)
Mom was very upset. We found out at 9am Saturday the Ambulance had arrived at 1am & advised 3 hr wait to get into A&E! They rang the ward who had discharged Dad.
The Home was surprised re Dads bleeding into Cathetar which is normal for him and had been advised by my Mom. The Home advised no Cathetar bags sent either?
Mom saw Dad on Monday too and upset re how pale etc he was.
We knew he was still not having Oramorph as Home claim/advised not on his discharge notes, not written up for it. He came out with the 2 Morphine patches on too.
Im not convinced re this.
The Home advised they had called Dads GP as it is the GP who looks after patients in the home to review Dad.
The GP called me yesterday to ask Mom to come earlier to the Home to have a face to face talk.
It was a Nurse Practicioner who came and still no Oramorph prescribed. I advised if they checked Dads records he had Oramorph at home which Mom gave to him.
I await the GP to ring me to see if Oramorph been prescribed.

St Giles Hospice have supported mom for 2 weeks before Covid struck at home. We could not bid for a respite bed 3 weeks ago as Dr's not able to say he had less than 12 weeks left. The Hospital had arranged mom to have Hospital Bed at home and 4 visits of 2 Carers for mom. She would pay as classed as self funding.
Mom a few hours later canx bed and rang Nursing Home 2 milrs away from her if had space. They had and we started the process.

I found out last night the Nurse Practicioner had advised he would do another referal to St Giles again?? The Home kept using the word Terminal to me instead of Pallative. I knoe its this however its very upsetting hearing this.The staff at the home advised need support themselves re Dads care. I always assumed thou I could be wrong that Medical Nursing Homes were aware how to nurse complex needs. The leaflet abd website of this Home highlight their ability to look after and cater for complex needs!

My question is have they decided its less than 12 weeks?
I haven't slept much at all tossed and turned.
Awaiting antibiotics as wheezing on chest, not covid as 3 days tested negative & Had covid booster 14th November.
Im just emotionally a wreck and feel as if its a dream and its going to be sorted out.
I have heard this for the last 3 months.

Im composing a letter thats factual and with bullet points in and trying to take the emotion out of it.
Its very very hard. I haven't cried and I feel guilty re this? I just want to sort this out. To give Dad a pain free and dignified last chapter of life.
Is this to much to ask?

You're doing well sax.
As a senior nurse, with over 36 years experience in the NHS (and 10 years in the private sector - recently retired), I know how hard this is.
I also know 100% that this is unacceptable. People behaving in this uncaring manner are an insult to all those who continue to work hard to provide quality care in these difficult times. This situation shouldn't be allowed to continue.

The home needs reporting to the Quality Care Commission.
This is pure neglect. Homes are happy to take payments from private patients or Social Services. They are paid to provide a specific service.
Re: lack of cot sides. This is clearly a health need and a fall risk. What will happen when he falls out?
Meal times. The home cannot stop you from visiting at mealtimes.
Whilst you can understand it is a busy time for them, it is their request, not something that is enforceable. It is a ridiculous excuse regarding family/patient embarrassment regarding feeding. I managed to get into a home at mealtimes by offering to feed an elderly relative with dementia.
You have a right to know what your father is being offered and how much he actually manages to eat/drink. Not to mention the medications he is on.
Someone with your father's needs should have a food/fluid diary of some description. For example: offered 2 tablespoons of mash potato - ate half a tablespoon.
Someone with a catheter should be having his fluid levels monitored to help flush his kidneys of medication and reduce the risks of infection. This is all basic 1st year student nurse knowledge. Bear in mind all nursing homes need to have at least one qualified nurse in order to give out medicines, so there really is no excuse.

I would also send a letter to a senior manager of the hospital regarding the discharge.
Your father has complex needs and should have had a proper discharge meeting.
It's too common now for people to be discharged from hospital into the community on Friday late in the afternoon with no-one to check on them over the weekend, and unfortunately not unusual for the elderly to be discharged from hospital at 2 and 3am in the morning to an empty cold house with no food, heating or care waiting.  

The GP
needs to know that you have concerns regarding your father's recent care and that you need urgent help. A phone call asking the GP to ring you (stand firm that you must speak to a GP) and a follow-up letter will also help. Most GPs have monthly meetings where things like this are discussed and complaints/concerns always have priority. When letters are submitted, all concerned are bound by their duty of care to respond.

Urgent call to the Social Work Department
mentioning concerns about the care your father is receiving. He is vulnerable and at risk from falls so they should give him priority. Request a hospice placement. No-one knows how long someone's life span is. A 12-week guess is ridiculous and quite frankly callous beyond belief

Don't feel guilty for not crying sax. Your brain is helping you to focus on the fight to keep your father as comfortable and pain-free as possible, as is his right. Try to stay strong and give it your best shot. They'll be other times for crying.

As Tango says, use your local Church Minister for support. As CC mentioned, your local MP may be able to rattle some cages. Google 'End of Life Choices' for information on what services should be available locally including MacMillan services.

Good luck sax. We're all rooting for you  

saxonsiren wrote:I just need to talk somewhere anywhere to get this off my chest. I just feel so bewildered and lost currently. Dad left hospital for Nursing Home as Mom still struggling from post covid complications & needs 24/7 nursing
Mom 79 & today walked 2 miles home upset and confused after seeing the state of Dad there. They had left his cathetar open so it had leaked on the sheets & they were wet & Dad. My dad cannot feel hia legs anymore or move them  He had no call button either. Mom went to the staff in the end but no rush to change him. She left at 1pm & he had had no lunch offered or a drink when Tea Trolley came round.
She met with the GP ( Nurse Practicioner) who had gone to see Dad. Prescribed his Oramorph as he hadn't been given any in 5 days since the move They had stuck 2 pain patches on when supposed to be one on only.. His Cancer in bones, Bladder, Prostrate. He has ulcer on scrotum thats so painful cannot wear PJ bottoms.
Mom so upset & going back tomorrow to ask questions.

Im angry and upset re this but even more so because I ring my sister who is 5 mins away from them , Im hr & 1/4 away i do not drive.. She bluntly says I dont want to talk about Dad etc she isnt ready & she needs a break. She refused to go in when both had covid. I went and stayed 6 days to nurse both of them before both went into hospital.
The problem is she never is or thinks her sibling ie me, may need some moral, emotional support.
The other Sister 20 mins from mom not been for 4 mobths or rang.
I feel so isolated re trying to listen support mom each day with phone calls etc. I just want to scream Its not fair! Why ket  Dad suffer so? His in a small room hardly any space and in wet sheets. Im going to have to call them now and say something. Yes know his terminal, we have no idea how long.....Its all ao hard and im trying my best but feeling its not enough

Im sorry for ranting I needed to speak out

Oh Sax, that is so distressing and so shocking.I have no expertise like B4p so I can offer no advice on how to get the whole situation addressed but I hope his words have been of some help and comfort.

What I DO have experience of is being the sibling who can react and do stuff whilst other siblings can't/won't. And I have also been the sibling who can't process quickly and do something, much to my sister's outrage. Basically I have learned that if the sibling (whether it is a sisteror oneself) can't act then there is absolutely no point wasting energy to try and make that happen. Accept that the sister who needs time to process needs exactly that and just hope that she willl be up and at it when she has had that time. Often family aren't the people whoare capable of providing the support you need. So instead of trying to push water uphill and endeavouring to get that help and support from them, seek it elsewhere.

For emotional support go to close friends, your partner, even your wider family (I found a particular cousin very empathetic). They will be there for you I'm sure. And, as you have just done, let off steam and get support from online friends and maybe also from online support groups for families of people in care (if such things exist - but they probably do). Often friends will be able to do some research for you, when you are too exhausted or too emotionally laden to do so, so that you can find the right advice. B4p has already been a great source of knowledge and advice and is a great example of friends either knowing or finding information for you.

You can also get professional support and advice from charities concerned with older people, eg Age Concern, Altzheimers Society etc. Just talking to people who understand can be so relieving of all the stress and pressure. It does also sound as though you need to get some sort of Social service department involved (B4p seems to know the correct ones).

Basically you can't do this on your own.You are not expected to do this on your own. Your sisters are unable to, or simply will not, provide you with support and help, but there are many others able to be there for you and hold your hand through this horrible time.

But in the end, you can only do what you can do. You are not superhuman or all powerful. This is NOT all on you. The Care Home has the greatest responsibility and they have failed. It is them who need to act and rectify their failings. I am sure you feel incredibly angry and you probably need an outlet. I can recommend shouting at the wind...

I just want to give you an almighty big hug and let you have a great big cry and then offer you a tissue and then make you a cup of tea.

Sending a lot of love and a hand squeeze xxx <3

PS, just read your post again and relaised I had missed that your dad is terminal.

Call Macmillan nurses or Marie Curie  -they have FANTASTIC support for families of terminally ill people. They will literally listen to you rant and cry and after being incredibly comforting will endeavour to find a solution.

Good luck Sax, I really feel for you. It is such an awful time for you xxx

One last suggestion from me sax, is to keep a daily diary. When you are in an emotive situation, it's not always easy to remember the finer details of what happened when.

Please let us all know how you're getting on. Your Strictly family is there for you

Any news Sax?

B4P thank you for asking. Its been very difficult as Mom as not wanting to make waves one minute and the next yes.
No appointment made yet with manager after the Bank Visit today my mom was going to ask for appointment with manager.
Mom has 2 hospitaI appointments this week,Neurology Wed & Friday Rheumtologist. All these 6 mths overdue as put off due to caring for Dad. So naturally she is worried and feels guilty missing a visit to dad.

I filled in online with Care Home Commisson my concerns and sent this off. I haven't advised mom as ahe was getting upset re it all. I felt it needed to be done so went ahead. I think it was right to do

Ive also sent email & Letter to GP outlining moms concerns. Im waiting to hear who is Dads Social Worker too. I followed your advice, thank you and took emotion out. Bullet points and concerns outlined.
I have also drafted a letter to The Home & GP to send

Dad hardly eating or drinking. My friend who I spent Wednesday out with tested positive for Covid Sat am lateral test & Confirmed yesterday. I got pinged as well to do PCR Test Sunday. This was negative however cough, sore throat been here for a week and wheezing
Im staying home as not wanting to take virus to Mom let alone in Nursing Home. I feel deflated and guilty too..
Waiting for my GP to give antibiotics so I can stop coughing up green stuff . Ill re do test wednesday am so I can go Thursday. I need to see Dad.

My nephew travelled 4 hrs up from Wells today to see my Dad. He wanted a final visit.
Dad not eating or drinking much at all.
The Nurse at the Home rang me Sunday afternoon to advise trying to get GP to prescribe Fortisip Mousse drinks. She also has filled in forms aa Dad Terminal ( Its so hard to hear this) for NHS to pay towards Dads Care re NI contributions and needs round the clock care .
Thats a positive from the home.

When did life get so comolicated and why always in December..Im dreading this festive season tbh. Ive asked mom to stay with us so not alone. I will have my mom in law 88 with Alzeimers so cannot changer her routine & my Son. Boxing Day freed up so We will go to mom.
My sister still not cancelled her Spanish Trip re 19 -29th December. Its all very messy

Will the home let me visit if poorly despite being negative? Mom wants me to stay home & isnt keen for her or dad to be exposed.
Im torn so very torn.

Hi sax

It sounds as if you've managed to do quite a bit this week. It's good that several services are now alerted to your urgent needs.

Re visiting, that will be the home's decision I expect.
It's good that you're not covid positive, however, you may still be capable of passing on other bugs.
On the positive side, your father will probably be in his own room so it's not as though you'll be mixing with the other residents in a communal lounge.
The home may let you in wearing a mask, but I'm not sure.

Another thing to ask is whether the home could organize a Whatsapp or video call for you and your mum so that your father can see you on screen and he may be able to say a few words to you or at least you can physically see him if not in person.

Keep in touch. Sending you lots of virtual strength and hugs

Keep your chin up Sax. Best wishes and prayers coming your way. We're all thinking of you. x

Hi Sax

I wasn't on the forum much last week so I'm really sorry but I only just saw and read the thread.

I gained a lot of experience when my Mum passed away in 2018 and was discharged from Hospital into a Nursing Home for End of Life Care. The advice that B4P has given you is fantastic. It seems to be an unfortunate fact that only those who make a big fuss on behalf of their parents, get their parents the care that they deserve. It really shouldn't be like this - I can well understand how stressed and drained you are feeling but you are doing so well. It beggars belief what sort of care that some people get who have not got relatives fighting for them.

My Mum got NHS Continuing Health Care funding (after a big fight, threatening formal complaints, refusing to take No for an answer etc). Your Dad should get what is called the Fastrak funding which is put into place fairly quickly without the full assessment being done, and is designed for those requiring palliative care'. However, you still need to make a case for it and don't be fobbed off after the initial assessment because sometimes people are inexplicably rejected at that point. It is tough to get and everyone will tell you a tale about CHC funding. When agreed however, they will make sure that your Dad is getting things like the Fortisips because it is all agreed at the time the funding is agreed. The Fastrak funding lasts for 12 weeks after which they do full assessment/review.

Don't give up Sax. You and your parents are in my thoughts. I am sending you virtual hugs and hope that things will improve quickly.

Thank you mauve . The Home Nurse advised had applied for the Funding and Fastrack. I have read up re lots of people 's experiences and fights to get this funding.
Its such a battle to get this . Why cannot it be made easier?
I also got in touch with Marie Curie via enail. They responded back & will try 3 seperate occasions to ring mom. I have their support number.
Mom has always been resistant to help and until Dad in Hospital or herself ill has struggled on alone.
I know its a new change for her & Dad. Dad bless seems to have forgotten living in the Bungalow 5 years ago. He tginks she is downstairs. Ge calls for her and staff ring Nom so she can speak to him. Dads forgotten how to use his mobile now.
Dad yesterday would not eat for mom at all not even a nibble of a Wagon Wheel. His not drinking either without a prompt and got more agaitated when mom kept trying.

Im going Thursday to see Dad as mom be at Hospital Appointment.

I would like to see Dad on own without Mom so I can have a few moments with him. It sounds horrible but I just need this. My Nephew did this too then went to see Mom after.

Im also going to try a Hospice Bed placement again. I have gone this route before . Social Team when Dad in hospital tried thou advised needed to know Dad had less than 12 weeks??
Im going to contact St Giles again.

Thank you all for listening, for being there. Im sorry for harping on. Just so overwhelmed.

much love
Sax

I think you did right filling out forms online to get things moving. Your mum has too much on her mind to think through all avenues and what she wants for the best. Stress does that in my opinion.

You are right in that Christmas is not the time for this but I lost my mum at the start of the festive season 23 years ago. It took me almost 20 years before I could put up a Christmas tree again.

Little things like you have been doing may seem like not enough but it is getting things moving in the right direction now to ensure your dad is given the treatment he deserves at this traumatic time.

Keep your chin up. I feel sorry I cannot offer you more valuable advice.

C.raig x

CaledonianCraig wrote:
Keep your chin up. I feel sorry I cannot offer you more valuable advice.

C.raig x

My sentiments too Sax. I'm 82 now and all I have to offer is prayer, but I strongly believe in God and take great comfort from it. You are never alone as he is always there.

Hi sax

I hope you get to see your dad on his own, it will be a big comfort for you.
You're doing so well during these very difficult circumstances. Just take things one step at a time, otherwise it will all become too overwhelming.

Sending you my best wishes, and I will say a prayer for you for strength and support
Keep in touch

Whatever happens, please know you have done your very best for both your mum and your dad. We will all face end of life one day and you are doing your very best to ensure your dad’s time will be as smooth and pain free as possible. This is the important thing. No need to feel guilty that you haven’t done enough (you have). No need to reprimand your siblings for not doing enough (they have their reasons and you will all need each other in the months to come). You are amazing and you have done your best, nobody could ask for more

fiftynotout wrote:Whatever happens, please know you have done your very best for both your mum and your dad.  We will all face end of life one day and you are doing your very best to ensure your dad’s time will be as smooth and pain free as possible.  This is the important thing.  No need to feel guilty that you haven’t done enough (you have).  No need to reprimand your siblings for not doing enough (they have their reasons and you will all need each other in the months to come).  You are amazing and you have done your best, nobody could ask for more

Such wise and lovely words Fifty.

Sax, I can feel your unbelievable stress and anguish in every word you write and I just wish I could take it away and make everything ok.

I can only echo Fifty and say that you have done so very, very much and nobody could ask more of you. You are one in a million. I will keep you and your family in my thoughts and hope that your Dad remains safe and comfortable. He will be feeling all your love. xxx

Any news sax?

fiftynotout wrote: No need to feel guilty that you haven’t done enough (you have).

When my own mother died, I got a visit from our parish priest and told him the same feelings of guilt and not having done enough. He said: Don't waste you life on feelings of guilt. Think instead of what you did and the times you spent together and your love for each other." I repeated those words to a director of our firm when his mother passed and later he thanked me and said they had helped him and been a comfort. They can for you too Sax. x.

Thank you so much Tango for your kind words. I am going to make a visit to the Chuch and speak to The Priest.
Fifty thank you, Diamonds & B4P too for support and being here to listen.

At last tomorrow pm I am clear to visit Dad. My antibiotics finished and home happy for me to come as chesty cough
gone and only a hint of wheeze. Its been horrible just waiting. Im going on my own as I really need this private moment. My youngest sister got to go yesterday with mom & she cried at the sight of Dad .and this made mom cry too.
She too wants to go on her own for a visit so taking a morning off work to go.
Mom takes her name labels and sews by Dads bed and talks to him as he sleeps. We brought him old fashioned night shirts as he cannot cope with pj bottoms against his skin.
Only 3 visitors are now allowed re government advice. My older estranged sister may not get the chance to visit. She hasn't rang or visited Mom in the last 3 months. Its a horrible situation and Mom angry & hurt and remains adamant she will not update her re Dad. I had contacted my eldest sister 6 weeks ago but drew blanks and not been in touch with us. I can only deal with so much and not sure if I should persist with contact.



The Aston Villa Fleece Blanket I ordered has arrived and its on his bed. Mom said Dad had perked up on seeing this and his eyes twinkled. This made me feel both sad and happy thou still my tears do not come.
I have some photos for Dads room to take .
Today he managed some Fortisip Mousse a few spoons.

The home have displayed fluid board now too..They are now advising what he has been offered and if eaten/Drank.
The Bed Rails are now in place. Dad did fall out of bed onto the crash mat on Saturday luckily bed was quite low. I did query the falls procedure and forms filled in. Mom gave permisson which she had a week ago to use them.
We are still trying to see if we can have a bigger room as its so tiny & a comfier chair for mom to sit in.
Its just felt a battle to get this far. The forms have been filled in re getting payment towards Dads costs back.
St Giles Hospice go in to support Dad & the Staff.

I am so so tired and Im very touched reading your messages. Thank You

Good luck tomorrow sax.

Just remember, from his point of view, your father doesn't know how his appearance has changed. He's still the same person inside, and will smile at some of the memories you may be able to recall. As Christopher Reeves told his wife after his catastrophic injury 'I'm still here, I'm still me'

Physical touch is important to people particularly when they are so ill. If you are able to hold his hand, or stroke his arm, he will know that you are with him, even though he may be dozing. Have you a small item he can hold when he's not got any visitors? My elderly mother found comfort in holding a small towel that smelt of home. Others use a small cuddly blanket, cushion, soft toy or a chunky 'hand-held' wooden cross.
If you wrote to Aston Villa, and asked if they had a signed photo of the team or a shirt, I bet they would send you something for him if you explained your situation.

Does he have a favourite aftershave that you could take in, or talcum powder that smells familiar?

Even when people are sleepy, they get comfort by listening to familiar sounds. For my mother in law who had dementia, we made a CD of all her favourite wartime singers like Gracie Fields and various Swing & Big Band tracks. She also liked certain hymns. Some families also record voices of their family recalling happier events. My own father liked to close his eyes and listen to the old comedians via a CD player. A radio tuned to a talk station like Radio 4 or a sports station, can also block out the other noises from the home.

Good luck tomorrow sax. You are doing all you can. As John Lennon said 'All you need is love,' so surround him with your love, and let him know you are there in his time of need and that everyone is thinking of him.

Keep us in the loop x