Caring for my Dad at home: a whole new world!

[vanessa1]

Hi. I have just given up work as a teacher to look after my Dad who has advanced prostate cancer. Although all the professionals we have met so far have been great, I do feel a bit isolated and out of my depth. I find myself texting friends during the day who are, of course, at work. I seem to have too much and too little time all at once. Does anyone have any tips on how to make the adjustment to my new life?

[pergola]

Hullo, Vanessa, I know what you are going through. Your life has changed but you have been given the opportunity to care for your loved one. In April, 2014, Brian and I moved house to be near daughter. Brian had cancer of the prostate. He received various chemotherapy and then had radiotherapy to enable him to make the journey.

Palliative care is very hard for the carer. Your life has changed. I was a retired nurse, with health problems myself. I was given long term antibiotics (chest condition) to keep me bug-free and in reasonable health to cope. During the summer of 2014, the weather was beautiful and didn't I miss my old life with Brian and me driving around the countryside on holidays. We were both retired.

Have you had contact with the local hospice. At first, Brian was well enough to have a day's break. They also had carer's day with lunch where I met people in the same position as myself. I could see Brian, who previously had been so healthy, with his walking in the countryside. It was hard to see him deteriorate.

We had a carer come in to tend for Brian, in the morning. During that I would get out to accustom myself to my new surroundings.

I did find that the nurse in me, kicked in. I was able to cope with all the emotional trauma at the time. Pain control had to be monitored. I kept a "ward" report. It was sad that Brian had to be admitted to Southampton Hospital, where he died just before Christmas. He was at peace but then I had to cope with the grieving process. Our loved ones are irreplaceable.

I would investigate carers' associations. Inquire at your surgery or use Google. You will get exhausted both physically and mentally. It is important to get as much rest as you can, under the circumstances.

You should get attendance allowance. Again ask at your surgery. You will need help with the form. Ask for that - Citzien'sAdvice might be able to help.

Make the most of being with your Dad. Talk, laugh if you can and hold his hand. Remember whatever you decide and do will be right for your Dad. I used to get so tied up with meds, fortified drinks and

and other meds, I used to loose touch with the companionship we both enjoyed. l

Love and good luck with everything from Pergola, (Annie)

[vanessa1 in reply to pergola]

Hello Annie

Thank you so much for your reply. My Dad lived abroad for many years so I do consider myself blessed to have this time with him. Our epic journey home from Malaysia is something I will never forget and I hope to always remember the times when we have laughed and chatted during the day. We have regular contact with a nurse from our local hospice which is brilliant - she is calm and reassuring as well as helpful in guiding us through the quagmire of medication!

Dad started a new round of radiotherapy yesterday which we were warned would probably increase his pain before it made any improvement. I have never felt so helpless as I did this evening when he was crying with the pain but wouldn't take any medication because he hadn't eaten. He was confusing his tablets and didn't need to force himself to eat. My amazing, wise and strong father was like a frightened child and I could do nothing to make it better for him.

I am so sorry that you have lost your husband; you must be devastated but I hope that your family are able help you. The very fact that you have taken the time to reply to me in your own time of sadness shows what a wonderful person you are.

Love and thanks,

Vanessa

[swallace in reply to vanessa1]

My heart goes out to you and your situation but its important that you make some time for yourself, doing something which you enjoy and is not care related. It will make you a stronger person. Good Luck

[jaykay777]

You are texting your friends during the day because you are isolated and need feedback on what is happening to your dad and your life. You may find as I did, that posting on supportive websites will provide the satisfaction of communicating with people who are going through experiences similar to yours. On these websites, members are available at almost all times. My caregiving days are over, but I still post to sites that helped me through my caregiving days. By doing this, I hope to help others and reflect on how having been a caregiver influences my present life.

[vanessa1 in reply to jaykay777]

Thank you so much for this. Since my first post on this site, I have not had time to check for replies until now so it was fantastic to find that three people had taken the time to give me their thoughts and advice - you are right about this being a good way to get feedback from people who have similar experiences. I am worried about becoming a burden myself to friends and family who really want to help but have their own lives to lead.

[Lorrainemally]

Hi there Vanessa I am an ex teaching assistant who is now her mothers full time carer as she has Alzhiemers and Vascular Dementia and is now 90. I am now heading into my 4th year at home with her. I have been back living at home for nearly 14 years due to divorce with my now 13yr old daughter and remarried 2 years ago so we are all here together. It is very isolating as once everyone's gone to work and school your pretty much on your own. I try to go out once a week to town and for the last 5 months mum goes to a day care centre on a Friday which is good for her and gives me a break. But, you have to try and train your mind to think of this as the "New Norm" which is very hard but any groups you can join or your dad is very helpful. But I totally sympathise. Loz x

[vanessa1 in reply to Lorrainemally]

Hi Loz

I like your idea of the "new norm"! I went to town yesterday and had breakfast in the coffee shop where my husband and I usually go on Saturdays. It felt odd but in a way liberating to be at large on a Thursday when I would normally be at work. I suppose I need to make the most of these opportunities. I am really enjoying the time with my Dad who has lived abroad for many years but it can also be very hard. I think one of the things I am struggling with is the isolation, as you know in school there is always someone around. You have contact with so many people in so many different ways during each day and have little time to reflect or dwell on anything.

Thank you so much for your reply,

Vanessa

[Lorrainemally in reply to vanessa1]

Hi Vanessa, look me up on facebook if you are on there. Lorraine Dyus. It's good to network with people in similar circumstances as us. You'd be surprised how many carers feel exactly the same xx

[pergola]

I am having really good feelings about this forum - fairly new. I wish it had been around when Brian was so ill. There were times when I felt "cant describe" and needed a jaw. They say I was grieving even when he was still alive. Only hope he didn't notice. Bless him. x

[Lorrainemally in reply to pergola]

Yes you do go through a grieving process even when they are still here, the middle years are the time when you look back to how it used to be and you grieve for that loss as they are drifting further and further away from the person they were. This is the stage I am in now and it is very hard. We have had 5 of our old friends that I grew up with in our close go last year with Alzhiemers/vascular dementia and Parkinson's so the loss of them, along with the connection to my history was emence. X

[pergola in reply to Lorrainemally]

I am thinking of you, Lorraine xx

[Lorrainemally]

Thank you.Im on Facebook if you want to friend me. Always available to anyone in need of a friend goingthrough difficult times or just to talk x

[lell1]

I too gave up teaching. I started do-it-yourself projects! Not always successful, but they do help fill a corner of that empty space that used to be your life. I also do jigsaws, that used to be a pet hate of mine! I find that I'm having things that I can show that I have done with my time, and also something to talk about with others. This week I started making a wooden garden lantern, just getting the materials was an achievement!

[secrets22]

Hello Vanessa,

I hear you and its hard,but I have the greatest respect for you in caring for your Dad at home.

I am pretty well in the same boat and the struggle is real and unrelenting.

I can give you no tangible advice as we are all different,but you will glad you are doing the best you can in a difficult situation and I salute you and wish you well.