Questions and Answers about Caring for a Spouse or Partner with Mesothelioma
A mesothelioma diagnosis can result in your loved one no longer being able to do the things they used to, and due to this, roles within the relationship may change. Whether these changes happen smoothly or prove to be difficult, will have a lot to do with your partner’s reaction to change and the way you communicate with each other.
“Every caregiver is different, every situation is different, so finding what works for the people most directly involved is most important.” ~Kelley Brunn, Well Spouse Association
Over time, it may become necessary for you to take over the general running of the home. While this may be done with the well-being of your partner in mind, it may cause conflict within your relationship.
Conflict is often the result of a seriously ill person being made to feel that they are no longer of any value to the relationship. It should be remembered that a mesothelioma diagnosis does not change the person; more often it changes other people’s perception of the person, and this can cause the mesothelioma patient a lot of grief.
To be relieved of all obligations is to feel helpless.
People with mesothelioma want and need to be treated in the same way that they have always been and to be allowed to carry on with their life to the best of their ability.
Part of our duty as caregivers is to allow for them to do this for as long as humanly possible. Time will determine what they can and cannot do, but old habits die hard, and they will be reluctant to relinquish roles that have been the mainstay of their lives.
Rather than take all responsibility from your loved one, talk to them about the things that need to be done and ask how you can help. Working together in this way will ease some of the burden placed on you as caregiver, as well as help your loved one to feel that they are still an important and much-needed member of the family.
Caring for a Mesothelioma Patient at Home
Depending on your financial status prior to your loved one being diagnosed with mesothelioma, worrying about how the bills will be paid can become an issue.
Here is some useful information to help you in this area, as well as other areas that may be causing you concern.
Q. Does being diagnosed with mesothelioma mean you have to stop working?
A. Not necessarily. Despite being diagnosed with mesothelioma, some patients are able to continue to work for some time. While the patient feels up to this, it should be encouraged. Being at work in the company of work colleagues and having a purpose for each day takes their mind off their illness as well as alleviating concerns over financial matters.
The same applies to the caregiver — while it is possible to continue working, it is highly recommended. As time passes, caregivers may need to cut down their hours to accommodate the level of care they are providing, and there may come a time when they will need to leave work altogether.
Q. If neither my partner nor I can continue to work, how will we be able to pay the bills?
A. The following information (PDF) has a lot of helpful information in regard to financial concerns for people who are experiencing financial difficulties due to illness.
The Mesothelioma Center may also be able to help you secure financial assistance.
Q. Do I need any special equipment to care for my partner at home?
A. Before you can properly care for a mesothelioma patient at home, there are a number of things to be considered. It is advisable to talk to your partner’s doctor or attending nurse about the practical things you may need in the home immediately and at some time in the future.
Q. Will we be able to sleep in the same bed?
A. Since your loved one may be spending a lot of time in bed, it is important that the bed is comfortable. Added to this, the height of the bed needs to be easily accessible to you as the caregiver without placing undue strain on your back.
If you and your partner have shared the same bed prior to diagnosis, it may still be possible for this to continue. There may come a time in the future, however, when it is best for the well-being of both of you to sleep in separate beds.
Maintaining a feeling of closeness is important. Moving into separate beds does not mean that you necessarily have to sleep in a separate room. On the other hand, if you are unable to get a good night’s sleep due to the restlessness of your partner, it may be a good idea to set up a room where you can go when needed. You sleeping in a separate room will also alleviate any concern your partner has about keeping you awake.
Q. What happens if my partner needs me, and I am not there?
A. If you have concerns about not being there if your partner needs you, make sure that the room you use for sleeping is within hearing distance of your partner. Place a simple bell or alarm device where he can easily get hold of it, and tell him to use it whenever he needs to.
If you will be away from the house for a short time during the day, let your partner know in advance so that he will not be concerned if he wakes and you are not there. Alleviate any concerns he may have by taking a mobile phone with you and leaving a phone within easy reach of your partner.
Q. I am worried that the bed is not comfortable. What is the best bed to use?
A. You may wish to make inquiries into whether a hospital bed is available. Many people choose this option because these beds can be adjusted both for height and for the level of recline. Patients who are bed-bound often wish to sit up in bed, and the hospital bed allows for this while still providing good support. Side rails can also be attached to the bed, if needed. And since the bed is on wheels, it can easily be moved from room to room.
Q. Do I need any special bedding?
A. Hospital mattresses can be a little too firm for some people. An eggshell foam mattress that can be placed on top of the hospital mattress makes a huge difference. Ask your local doctor or attending nurse if they can help you locate where these mattresses may be obtained in your area.
You may need to purchase some additional pillows to make your partner more comfortable when sitting up during the day. What a lot of people find helpful is a V-shaped pillow.
Q. Apart from the bed, what others things will my partner need?
A. Depending on the mobility of your partner, there may be a range of practical aids he will require. Ask your doctor if he could put you in touch with the occupational therapist attached to the hospital. It can then be arranged for the therapist to visit your home to determine what is needed.
This may include things like hand rails, a walker, a wheelchair, a wheelchair ramp, a shower chair and a commode. The therapist will be able to help you arrange for these things to be put in place when required.
Q. What is a commode?
A. Commodes consist of a metal frame with a container in place for waste and are designed for people who find it difficult or who are unable to use a conventional toilet. There are a variety of designs available to accommodate different people’s needs.
Bed pans (a portable container to hold waste) and a portable urinal (a plastic vessel for holding urine) are also available, and it is advisable to have these on hand in case there comes a time when your partner is unable to rise from the bed to use the commode.
Q. Will my partner need to be on oxygen?
At some time in the future, oxygen may be needed to make it easier for your partner to breathe. Being on oxygen does not mean that your partner will be unable to leave the home.
Small, portable oxygen cylinders are available and can easily be taken along for outside activities. It may pay to talk to your partner’s doctor about oxygen supply just in case it becomes necessary. He will be able to advise you how you can arrange for oxygen cylinders to be delivered to your home.
Q. What happens if I cannot cope with everything that needs to be done?
A. If it is possible, talk to your family about your concerns, and ask them to help out. For many family members who have wanted to do something but did not know how to ask, this is just the cue they have been waiting for.
Medline Plus, a National Institutes of Health website, has some helpful information on home care as well as a range of other health-related topics.
I hope you have found my blog to be helpful.
In my next blog, I will be talking about how friends and acquaintances react to a mesothelioma diagnosis and why they act the way they do.
Hope to see you back soon – Take care.