Lost and helpless

Hello

So sorry to hear of the loss of your mother, and your father's illness. It is so much harder with the Covid restrictions to be with loved ones in these most difficult of situations.

Have you been in touch with your local Macmillan team? We are new to this - diagnosed in February, but once we made contact with the local Macmillan team we have had such good support on a number of levels, which has made us feel less alone and isolated.

I hope that you can find the support and help that you need.

Best wishes.

Hello Lostladydeb

First of all I would like to welcome you to our group, it is good that you have been able to get in touch.

I am so sorry to hear about the sad loss of your mum and now you have this devastating situation with your poor dad.

This is the most difficult situation for both cancer patients and those who love and support them but can't be with them in person at the moment.  

It is understandable how your dad feels, he has lost his wife and now he has been diagnosed with colon cancer and he is isolated from those who love him. My husband is in a care home and I haven't been able to see him for over 12 weeks and I know from speaking to the home manager how difficult it is for residents when they cannot see their loved ones.  I think you need to have a chat with the home manager to let him/her know how your dad is feeling and see if they can set up a video link for you to speak to your dad with a member of staff present to support him.  I know that video calls have helped me although it is hard for my husband.  I assume your dad is isolated in his room, and this must be so difficult for him.  You may also be able to phone the home and ask them to take the phone to your dad if you feel that he is ignoring his phone, and ask the home to check if his phone is fully charged.

The home where my husband is is trying to arrange activities for residents to do, but men often don't want to take part in any of this.  For my husband they have arranged for members of staff to spend extra time just chatting to. him every day.  

Some patients have a severe reaction to certain chemos used to treat colon cancer.  I had colon cancer and I know how difficult these chemo treatments are to tolerate.   

Your dad should have details of his Cancer Specialist Nurse or Key Worker and they are there not only to support your dad but to support you, his family, too.  If you have the number ring her/him and tell them how both you and your dad are feeling and discuss where the weekly blood transfusions will take place.  If, as I assume, he will have to attend hospital for this, ask for the nurse to be with your dad and chat to him.  

It is very hard when someone you love has to go into a home.  It is hard for them and I know how guilty I have felt when my husband was admitted a year ago.  But I am glad he is there now for I know that if he'd been at home when this Covid crisis started I would have cancelled carers coming into our home. to keep him safe and I would have struggled to have looked after him which would have also impacted upon my health.  You have a young family to look after and you shouldn't feel guilty about your dad being in a nursing home.  He is safe, he is being looked after and there is someone on hand 24 hours a day.  

You must remember to make sure you look after yourself too, as your children and your dad need you to be well to support them, especially at this strange time we are living in.

There is a carer only group on here and you may find it helpful to have a look at that group and if you feel appropriate join it too.

Take care, and I send you a hug

VickiLynne

Hi Silver Burch and Lostladybed

You are so right about the Macmillan Teams, Silver Birch, but  unfortunately they are not available in every part of the country, but there is the excellent Macmillan Help and Support line, which I forgot to mention in my previous message to you Lostladydeb.

The number is 0808 808 00 00 its a free to call line and its available from 8:00 am to 8:00 pm 7 days a week and you can talk to them about any cancer related matter and there is always a friendly voice at the end of the line.

VickiLynne

Hi Silver Birch

I've had a break from the community for a few months and I'm trying to catch up with everyone best I can.  

I'd like to say 'hello' and hope that you are making a good recovery from your surgery.

Take care,

VickiLynne

Thank you. 

we were at the hospital today and I asked them to refer to Macmillan and hopefully this will get dad some support emotionally and physically, for me too. 
thank you for taking the time to reply x 

Hi 

sorry to hear about your husband. I did see dad today as I took him to the hospital. Had a good few hours with him and he was much brighter. 
you are definitely right, dad won’t join in the things that happen in the home. He’s 73 so a bit younger than most in there. 
we had a meeting today with the home and talked to them about what dad needs emotionally. He would like to get home so we need to plan for that too. as you say though I like that there is someone there all the time and I will worry when he’s at home.

take care and thank you for taking the time to reply x 

Hi Lostladydeb

Thank you, my husband is also in his early seventies, and it is young to be in a home - which makes it harder for family too

I'm pleased to hear that you were able to take him to the hospital and that he seemed much brighter.  It's also good that you were able to have a meeting with the staff at the home.  

Don't rush getting him home, better he stays. there for a little longer in the hope of getting him stronger, and knowing that there is 24 hr care takes so much worry from you.  I know how I used to worry if I went out for a couple of hours and left him at home alone.  When I was away and we had regular carers (including someone staying overnight) but I still worried as there were times when he was alone.

I hope your dad continues to improve.

Take care,

VickiLynne

That’s what I worry about as dad would be on his own. I only live round the corner but not the same as having staff there 24/7. 
It’s all just a massive worry. 
I know he hates being in the home but also says he feels safe there. We can just take each day as it comes but omg this is difficult xx

Hi again Lostladydeb

Your dad seems like a very sensible person.  He knows he is safe there and being looked after.  My husband also hated being in the home at first but he has accepted that it is best for both of us.

The situation with this crisis makes things so much worse, and he will understand that too.  Hopefully now that he has seen you today and having the chat with the home staff he will be more settled.

It is difficult, but you are doing the very best you can for your dad, making sure he is safe and well looks after and I am sure that your dad knows and appreciates that.

Take care, and I hope you have a good weekend with your children.

Sending you a hug

VickiLynne

I think sometimes that’s Dads biggest downfall that he is very mentally there and he can over think things. 
I do think he knows I am trying my best. I wish there was a separate home for this situation rather than what they see as an “old people’s”  home xx