Caring for a Young Spouse

One of the most difficult scenarios that one can deal with is finding yourself newly married and then your spouse gets a devastating diagnosis. All the dreams you had as you committed your lives to each other just evaporate before both of you. You really meant 'in sickness and in health' but you just never really anticipated it would be this soon in your marriage.

When you're alone with your thoughts you may wonder if you can hang in for the duration. It may not be a terminal illness but a chronic debilitating illness, leaving them incapable of working. As is true with many chronic illnesses there may be a great deal of pain involved. With pain often comes medications. With long term medications may come addictions. All of these things may be issues that are now part of your daily life.

Discussions may ensue whether or not to have a family. If your male partner is going to be undergoing chemotherapy you may want to have the discussion as to whether or not to have his sperm frozen.

Your relationship is likely to change on many levels and your marriage, and commitment, will be tested. Your partner may become very depressed, easily agitated, and enveloped in 'woe is me.' Although these are very difficult to deal with they are a very normal response to their present situation. One of the best things you can do at that point is to plan for some counseling sessions. Your roles have been redefined and you both need to say good-bye to the life you both anticipated. Your partner may likely have guilt that they are not there for you, if you have children already that they aren't there to be a 'parent' the way they wanted to be--or may need to come to the realization that they may not live to watch their children grow up. That's a terrible burden to leave on your partner--and both sides really need to discuss what they want for their children.

Another major aspect that is likely to have changed in your relationship is sex. And, let's be honest, it is an important element to one's relationship. This is not the time to find 'wanderlust'. Find a way to enjoy sex with each other in whatever capacity you can. Do they need a massage, or a sponge bath? Make it erotic.

As a young couple it is likely that as the caregiver you will also need to be gainfully employed. There are pros and cons to this. It gives you a break away from your caregiving role while enabling you to have meaningful friendships at the office. That's an important aspect of your own mental well being. But don't use it as a refuge. It is easy to spend extra hours away from home while all your spouse has thought about all day is when you'll be back. The more hours you spend away the more that resentment may build between you.

Let's assume that your spouse is bedridden, or basically mostly convined to your home. What is it that you did together before you got married that you both could enjoy? Rent a movie? Make some popcorn? A romantic dinner? A night of cards? Scrabble? Have friends over?

If they are capable of helping then it is in both of your best interest that you ask them to prepare a wonderful meal for you both. Maybe you'll need to teach them a few culinary dishes but it will give them a sense of dignity--that they can still offer something to the relationship.

Leave them little love notes when you go off to work. "Looking forward to a nice evening listening to music tonight with my sweetie." Or bring home a massage therapist for both of you.

Remember that it's important to treat yourself well, but don't stop treating your spouse as your spouse.

Making Your Home Safe

Safety is paramount in caring for your loved one. Many times the way our home is arranged is not really accessible or safe for someone who may be disabled or limited in their mobility. I recommend that you contact an Occupational Therapist to come out and evaluate your home. You can find an Occupational Therapist by contacting your hospital or rehabilitation center. You may also find them listed in the yellow pages. Their job is to help you make your home as safe as possible. They may even make suggestions as to structural changes which may be necessary for wheelchair accomodation. Perhaps you will need a ramp or will need to have doorways enlarged.

One of the typical changes will be a raised toilet seat with a grab bar beside it and grab bars in the bathtub and shower area. You may need a bath chair or bench in the shower that extends outside of the shower so they can transfer from a wheelchair and then slide over to be inside the shower. There will need to be organizers on the stool or bench that can hold soap, a wash cloth and shampoo. You will also need to make certain that there is a non-skid mat in the bath/shower as well as to step on when they get out. There are brushes that you can buy with long handles that allow your loved one to reach their feet or back.

Special attention needs to be given to the loved one's bedroom, their bathroom, any hallway they may need to use and any other room where they may spend a portion of their day. The kitchen may, or may not be, a place where they will spend time. If they are ambulatory, will they need handrails to get from one room to another? Or will they need to use a walker? A cane? Are there scatter rugs? They will need to be removed! Does furniture need to be rearranged for easier access? Do you have an intercom or baby monitor so you can hear them if they need you?

Hallways, bedrooms and bathrooms will all need nightlights. If they need to get up during the night, bright lights can disorient someone who has just woken up.

Make sure there are operational smoke alarms outside the bedroom and an accessible fire extinquisher.

Is there a cordless phone near both their bed and chair where they may spend a portion of the day? This is necessary if they will spend any time alone. Phones need to be programmed with emergency numbers, and yours, and have adaptive equipment if they are hard of hearing or large numbers if they have vision problems. Another necessity would be a medical or home alert necklace or bracelet. This would be a necessity if they wil be alone during the day.

On their bedstand they will need the phone (you can shut the ringer off in their room), a flashlight, and a bell to contact you if they can't yell for assistance. If they have emphysema, COPD, or asthma they may also need to have a breathing machine, or oxygen.

You will need to make certain that all obstacles are out of their way. That will include rugs and thresholds that may inhibit a walker, wheelchair or shuffling feet. And speaking of shuffling feet--do know what they are putting on their feet? NO SCUFFIES! Sneakers are best and they come with velcro tabs to close them.

The bathroom is the room where most accidents happen. If you have a tile or stone floor a fall there would certainly mean a broken bone or even a hip. You may want to have the bathroom fitted with a remant carpet piece. A slippery floor is not a good mix with a fragile person with mobility issues.

Consider the following do they need to have a hospital bed that lowers and raises? Or do they need rails to prevent falling? What about a beside commode?

A body pillow (cylindrical pillows that are about 3 to 4 feet long) can make them more comfortable. If they sleep on their side it goes between their knees and will help keep their spine in alignment. If they sleep on their back it goes under their knees which takes the stress off their lower back.

Kitchens--many people who need care are no longer active in the kitchen but if this is a big part of their identity it would be good to help set up the kitchen for their use. Coffee pot on the counter, a few dishes that they can use on the counter. If they have some memory loss there are locks you can get (and I strongly recommend) for the stove, cabinets that contain chemicals, and you can remove the knobs from the burners.

Take as many precautions as you can and your life will be easier in the long run.