Cancer: how to help a spouse or partner with terminal illness.

The unthinkable happens ...

The diagnosis confirms your worst fears. The fears you resolutely pushed aside when they whispered to you in the long dark hours of the night. You told yourself you were being over-dramatic, lots of illnesses had the same symptoms, it would turn out to be something simple. Why should you be picked out to endure the worst? Wasn't that scare-mongering of the most self-obsessed kind? But now the diagnosis says you were right to worry and the worst thing is, it isn't you who has the death sentence. It's your spouse, your partner, the person you love and your first reaction may well be to wish it was you who was going to die instead.

Source
Source

A personal perspective.

As I am writing this from a very personal perspective the information here must necessarily be very subjective but I still hope that it can help people supporting others in the same situation. It is not intended to be a definitive guide as there must be many ways to approach such a major life crisis and other people may well have found different coping strategies and obtained more help from professional care services. I can only outline the things that helped my husband and myself and what insights I gained during the last thirteen months of his life.

The first fortnight.

The first fortnight after diagnosis will seem unbearable. Time appears to stand still and all you can do now is endure, cry and rant and rail if you need to. Obviously a fortnight seems like quite an arbitrary time span and for some it may be less whilst for others it may be more but this is the crying time, the time to try to come to some sort of terms with the enormity of it all. It is entirely likely that you and your partner will feel bitter and cheated by life. There may also be regret as they assess their lives so far and the missed opportunities are remembered. There is no way around this time, it simply has to be got through and it could be that anti-depressants or tranquillisers may be prescribed if they do not interfere with any medication necessary for the illness.

The next step.

Once you both feel a bit more in control and, strangely, it will come, you can then begin to plan your fightback. Most people seem to want to put up some sort of fight, hope does seem to be a common emotion after the initial shock. Of course much will depend on what the terminal illness is and how long a residual life-term the person has been given. If time is very short and the person is in pain, then really all that can be done is to ensure that adequate pain relief is available and, if possible, that the sufferer gets to die where they wish.

Pain relief in the UK may mean the insertion of a syringe driver which is a small portable pump that administers a constant measured dose of pain relief or anti-nausea medication subcutaneously (i.e. under the skin). This can be taped to the shoulder if the patient is bed-ridden or alternatively, if the patient is still mobile, it can be easily carried in pocket or handbag (purse), clipped onto a belt or even retained in a small underarm holster. This means that pain can hopefully be reduced or eradicated and some sort of relatively normal routine may be maintained.

The value of routine.

For many people in this situation the ordinary routine of daily life can be beneficial in helping to distract them from a constant awareness of their situation. My husband told me that he did not constantly think of his terminal diagnosis, especially as time passed and although his mind sometimes strayed to thoughts of death he found he was unable to focus on it for long and it was easy to distract himself.

Don't assume you know what they want.

There is often the strange assumption that the patient will want to tour the world/bungee jump/swim with dolphins/see the Taj Mahal etc. with the brief time left to them. We seem to assume that they will want to live every day they have left at a fast pace. This may be true of some individuals but of all the cancer sufferers I have known I have never found that to be true. It would appear to be more of what the carer thinks they should want to do.

Even those people who were given a year or more and who had reasonable energy levels left after treatment preferred to stay in their home environment with the family and friends they loved and trusted around them. It seemed that familiar surroundings offered them a necessary comfort. I have known two family members with terminal diagnoses and neither of them wanted to stray far from home, far from the familiar. Apart from short breaks to much-loved holiday haunts in the UK they wanted simply to stay in their own surroundings and appreciate their family around them until the time came. But then, they may be the exceptions. So, the bottom line here is, before you book 'the trip of a lifetime' for your loved one, check whether or not they actually want one.

Source
Source

Take all the help you can get.

This may seem obvious but there are people who can't bring themselves to ask for help and there are others who still don't know there is a lot of help available. It is vital that you seek all the help you can get ... fast. That way you will be free to do the important job of providing love and support to your spouse.

I can only speak for the UK here but there are organisations who will support most terminal and long-term conditions in one way or another. It pays to be informed on behalf of the patient so look up the organisations either on the internet or in the Yellow Pages phone book. Contact them and deal with them to get the best possible care for your spouse.

In any event the doctor or hospital giving a terminal diagnosis to a patient will contact all the support organisations in the area on the patient's behalf as well as handing out the leaflets of such organisations. This will happen no matter how remote the district in which the patient lives. In my experience a terminal diagnosis in the UK automatically generates a rapid response from support agencies and a whole raft of help surfaces. From extra financial benefits from the Government to help you manage on a reduced income to nursing care in your own home, this is your support network ... use them ... they will help you help your loved one.

Can complementary therapies help?

Despite many people feeling these therapies are just so much 'snake oil' I believe they have a valid role to play in the care of the terminally ill and as I am retired complementary therapist you might expect me to hold such a view. However I believe that such therapies should be used in conjunction with mainstream medicine, hence the use of the word 'complementary' rather than 'alternative'. Perversely, the one man who lasted longest of all the cancer sufferers I knew lived for eleven year with prostate cancer treating it solely with the alternative methods of the Gerson Diet and coffee enemas. He lived a very full and vigorous life and almost seemed to find his battle with cancer a reason for living.

In my early desperation for a cure I sourced mineral supplements from Germany which made my husband joke to friends and family that he was 'on one pill from the doctor and twenty from the wife'. But I am convinced that the fact he grew hair rather than lost it during chemotherapy was down to these mineral supplements. His mind set was usually positive and he recovered quickly from his chemo. sessions which I believe was due to the deeply calming effect of reiki, the hands-on healing which I gave him regularly. Giving reiki is a two-way thing and it also helped me to help him as I was able to maintain a calm and positive outlook even though there came a time when I realised this was a battle we were not going to win.

I firmly believe that the combination of mainstream medicine with complementary therapies as an adjunct helped him to have thirteen months of excellent quality life. He was bed-ridden for only two weeks and gravely ill for only three days. He lived with utter stoicism during this time and died peacefully and with total dignity.

My husband - Clarry Hopper 1957 - 2003
My husband - Clarry Hopper 1957 - 2003 | Source

A place to die.

This is a tricky issue. Sometimes you don't have a choice. An illness that needs a great deal of intensive nursing means, inevitably, that the only place for the patient is a hospital or hospice and your doctor will advise this. But there are always the wishes of the patient to take into consideration too. It could be that your partner desperately wants to be in familiar surroundings for their final days.

This is something maybe you could talk over with your spouse's doctor in private and you may have to be fairly insistent. I was lucky, once I informed the doctor of our choice a whole body of support emerged to help. District nurses descended regularly to monitor and top up the medication in the syringe driver. They helped me bathe him, turn him and change bedsheets. They exchanged cheeky banter with him and generally cheered up our day.

Being at home can also mean that family members may be able drop in regularly to chat and even help with the nursing care and let you take a break for an hour or two. This can not only be beneficial for you but also for them. Knowing they are needed and have been useful can sometimes help them with their own grief. The only thing to beware of is is to make sure they are mentally strong; only choose those with a positive mental attitude. You don't need me to tell you that anyone who dissolves into tears all the time is going to be no help at all.

Macmillan Cancer Support is another place to access help and nursing support. Their specially trained cancer nurses will often take over any nursing care that is needed at night which will allow you to get the sleep you need to stay in control during the daytime.

Looking after yourself.

Remember that none of this is your fault, there is nothing you could have done to avoid this situation and you should not feel guilty because you are going to live. More than this you have a duty to look after yourself at this time. Far from being selfish it is absolutely essential that you try to get regular unbroken sleep and adequate nutrition. These things will help you to develop and maintain the mental strength you will need to enable you to care properly for your spouse. They may become difficult and complaining, understandably many of them become totally self-obsessed, some may become angry or even incomprehensible and you will need a great deal of fortitude to care for them.

This caring process will not finish until after the funeral which should be your last act of love and support for them. Only then can you take the time to mend yourself and be ready to give yourself as much love and care as you have shown your deceased loved one. Only then can you start to think of moving on with your life, slowly, one step at a time.

For information about caring for someone with cancer contact:

http://www.macmillan.org.uk

For information on Disability Living Allowance contact:

http://www.direct.gov.uk

Source

More by this Author


Comments 19 comments

thejeffriestube profile image

thejeffriestube 4 years ago from United States

This makes me realize each one of us will eventually be touched or affected by this, and we can only hope we're ready to do what is necessary. I hope I am. Great Hub!


Angie Jardine profile image

Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ... Author

My goodness, m'dear ... you were quick off the mark! Thank you for taking the time to comment, I appreciate it.

I got to over 50 before cancer touched my life and I considered myself very lucky. At the time the statistics were that 1 in 4 people would get cancer in their lifetime and 1 in 3 of those would die.

Since then I have known 6 people with cancer and only one of those may survive ... her treatment is not yet finished although the prognosis is hopeful.

It is amazing what courage one can dredge up when one has to. I had no choice, I had to help though now it bothers me that I may no longer have such reserves of bravery.


thejeffriestube profile image

thejeffriestube 4 years ago from United States

"it bothers me that I may no longer have such reserves of bravery"

I refuse to believe that about you. Bravery and courage are inherent to a person's character, and it seems you are stronger than you give yourself credit for.


Angie Jardine profile image

Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ... Author

Thank you for that, thejeffriestube ... as I get older it becomes more and more likely that I may well be tested again. I hope your faith in me will prove justified.


writeronline 4 years ago

This is a beautiful Hub, Angie. Beautifully written. Beautifully straightforward. A clear, concise and very helpful piece that I’m sure will continue to be a great source of information, direction and clarity for anyone unfortunate enough to find themselves in a similar situation.

I admire deeply your strength in sharing such a shattering personal experience, and your writing ability in conveying it so well.

Thankyou.

Can I also say that your husband jumped out to me from his photo. The kind of guy, if I saw him in a social situation, I’d want to go and say g’day, and get to know.


Angie Jardine profile image

Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ... Author

G'day WOL ... many thanks for your kind comments. They mean a lot to me.

Yes, you would have liked Clar ... everyone did. He was definitely a blokey bloke.

We seemed to be able to go anywhere in the country and meet someone he knew ... it was a source of great amusement to me.

He died just 20 days after his 46th birthday ... and now it is over 8 years down the line and he would want me to use his story to help others. He'd say ' Go for it, lass'. He was a big-hearted Yorkshireman - you know the quiet sort who looks like a thug but who is pure marshmallow inside. We all miss him.


Pcunix profile image

Pcunix 4 years ago from SE MA

You've managed to combine a beautiful and touching remembrance with practical advice for others. Well done.


Amanda Severn profile image

Amanda Severn 4 years ago from UK

This is a tough subject to talk about, but you've covered it beautifully. I've known several people who've had cancer, and it's not an easy journey.


diogenes profile image

diogenes 4 years ago from UK and Mexico

Hello Angie: How sad, to be cut off so young. I lost my mum many years ago when she was a 'young" 61. It is amazing what close relatives can survive themselves.

All one can say really, and it's a bit trite, is that your husband is in a far better place and at peace.

The good do seem to die young, don't they? Maybe the Devil has a hand in it...how brave he was.

I expect you are glad there are some intervening years and the pain is bearable..

Bob x


CMerritt profile image

CMerritt 4 years ago from Pendleton, Indiana

This very topic leaves me feeling very strange.

This past spring, my wife and I went through the first phase of which you spoke about. She was diagnosed with a tumor on her pancrease....and we prepared for the worst.

Thank the Lord, as more and more test were done, it was confirmed that it was NOT a tumor, but an abnormality, and she will be fine.

That left us happy beyond belief, but that experience of the possiblitiy of losing a spouse is something that I pray I never have to endure for many, many more years.

Thank you for sharing this Angie...it is a hub, I am very certain that will help anyone who may go through what you had to do.

Chris


Angie Jardine profile image

Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ... Author

@ Pcunix - thanks for the kind comments, PC. It took a lot of rewriting as it tended to keep getting too personal.

@Amanda - again, many thanks. Sadly I feel we are all going to see more and more cancer in our lives. My belief is that cancers form principally due to our body's constant attempts to combat pollution of many kinds including the 'extras' that are added to our foods. I think its correction system goes haywire after a time due to overwork and that's when it starts to 'eat' itself and produce tumours.

@diogenes ... hi, Bob. Thanks for your kindness. Yes, I'm glad to be a few years down the line now and remarried to another lovely man. The nightmare had faded mainly and I can remember the good times and the laughs.

We even laughed when he was ill. It's amazing really to be able to laugh because he was too weak to get back to bed after being out of it so we had our lunch on the landing before trying again! The whole event reduced us to giggles which of course made both of us even weaker. He really was remarkable.

@CMerritt ... many thanks for commenting, Chris - and for the 'follow'.

I really appreciate your taking the time to tell me of your wife's close shave with serious illness. I am so glad that it was something fixable.

You never think you will be able to cope with such a thing ... and maybe, in the case of a child's illness, you never really can.

I honestly thought it would have been better if it had been me who had the diagnosis. It was an arrogance to think I would have been able to deal with it better than he could. My inner control freak showing I guess.


billiebender profile image

billiebender 4 years ago from Washington, DC

Thanks for sharing your experience. You provided some very valuable tips here.


Angie Jardine profile image

Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ... Author

Thank you billiebender ... there must be a lot of info. out there from organisations but I felt first hand experience might turn something new up for other people unlucky enough to be in the same situation.


GmaGoldie profile image

GmaGoldie 4 years ago from Madison, Wisconsin

Angie Jardine,

My husband died in 1995. I have to be honest with you it still hurts. The photo of your husband was awesome. You brought back a flood of memories.

The power of routine is important. The trust that you are on the right road is even more important.

My late husband was more concerned about me and his family than anything - that was the kind of man he was. When he died, he died in the garage. I mention this because you said place to die. Even in my husband's death he was thinking about me and remaining in the house after his death.

I didn't go in the garage after his death.

The coroner was literally mean asking about why the garage. I was so confused, so upset. I didn't understand myself. After days of pondering and my friends from the police department also questioning (in a kind fashion not in a suspicious fashion), I realized he choose the garage for me. I am not a car person and that was the one room I could avoid. And you know what - I did.

I gave his car to the stepdaughter he would not adopt. I could have kept it, he did not die in the car.

Life has interesting turns. Death of a close one does change us forever. I have had to close the door on a number of "friends" and move on to a new chapter. Death has taught me there are real friends and others who waste my time.

I was blasted from coworkers years later for the dating revolving door. But my standards were so high and I had a new appreciation for my time and the time of others. I still feel it is disrespectful to spend time IF the true intent is not there.

I know have a family, a true family with my late husband's son. A son who adored him and a son and a daughter in law who truly some of the most remarkable people on earth.

Death is a blessing IF we learn from it and cherish the journey God has given us. I only had a few short years with Joseph and yet the memories and the wisdom he gave me and the family he left with me live on and have made my life more focused and more serene. I am happier because he showed me the very best of humanity and I strive to be more like him each day.

My husband today is equally as wonderful if not more so but I would not have been even close to worthy without my Joseph.

The routine during his cancer which I wish we would have better at keeping was exercise. Ironically a student approached me to write an article about cancer and exercise for one of my sites. I choose to publish here for the widest amount of exposure. I wish the medical profession would prescribe exercise as part of the therapy.


Angie Jardine profile image

Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ... Author

Thank you for your valuable input on this hub, GMaGoldie.

My husband had three brain tumours so exercise was not an option for him. It affected his balance and co-ordination and eventually he became too weak to do much.

The most important thing for him was our extended family so we spent as much time as we could with everyone ... it made him happy. Friends and family are by far the most important things in life and it shows more than ever when we are ill.

I wish you every happiness for the future ...


Sharyn's Slant profile image

Sharyn's Slant 4 years ago from Northeast Ohio USA

Hi Angie,

This was so beautifully written . . . so kind and thoughtful. Thank you for sharing your journey. I give you the utmost respect for how you presented your personal perspective. I will share this piece as I am positive it will touch many people's lives. Best wishes to you,

Sharyn


Angie Jardine profile image

Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ... Author

Thank you so much for your kind comments, Sharyn. I value them highly ...


Duncan 3 years ago

Thanks - still not in words yet


Angie Jardine profile image

Angie Jardine 3 years ago from Cornwall, land of the eternally youthful mind ... Author

Thank you for letting me know you are there though, Duncan …

Time heals … it’s corny but it’s true. It will possibly never heal you completely, but it will heal you enough to continue with the adventure of life. It is up to you what you make of it then.

With love ...

    Sign in or sign up and post using a HubPages Network account.

    0 of 8192 characters used
    Post Comment

    No HTML is allowed in comments, but URLs will be hyperlinked. Comments are not for promoting your articles or other sites.


    Click to Rate This Article
    working