Intimacy with Your Patient-Spouse

Many of us are caregivers to our spouses, which often entails switching our hats back and forth between “nurse” and “spouse”. This is easier for some than for others. Men who care for their wives, and women who care for their husbands, have very different challenges.

I realize not everyone will fall into these categories perfectly, but for the sake of argument I’ll use well-known generalizations for each gender.

Men can usually compartmentalize their lives. In other words, it is not uncommon for a man who nurses his wife all day, to still be turned on by her and ready for intimacy in the evening. For that matter, he may even have trouble curbing his physical attraction while giving her a bath or lifting her from bed. He is able to put his caregiving into a compartment and leave it there while he allows his intimacy compartment to come to the forefront and express his physical love for her without a problem.

Women, on the other hand, tend to connect everything they do. Every responsibility, whether negative or positive, becomes a part of them. Their duties, hobbies, challenges, and other home concerns, are lumped together and not easily separated from one another. So, a woman who cares for her husband all day will often find it difficult to separate her nursing duties from her intimate love for her husband. It might be far more difficult for her to make love to her husband after a long day of nursing him as a patient. In addition, as women age, they experience a physiological change--a lack of interest in sex--so a tiring day of nursing duties can remove the idea of intimacy from her entirely.

Medication can take its toll on intimacy as well. Many of the medications for neurological disorders, cancer, and age, can create impotence or fatigue, both of which become challenges for the sexually active. The male patient may have the desire to be intimate, but because of his medication, his body is unwilling to fulfill that obligation. This can be extremely frustrating, not to mention tiring for both partners.

So what can we do about these things? Medication seems an impossible obstacle to mount (pardon the pun). The biggest thing you can do is to recognize your situation and identify what is creating the intimacy issue. If medication is the problem, ask your doctor whether an ED will assist. I realize adding another medication is usually not ideal, but your doctor can help you with the best remedy for your situation. You may find that the ways you used to be intimate just aren’t realistic any longer. In that case, find new ways to enjoy your partner.

Surprise your spouse with opportunities to be “frisky”. Sometimes your initiation can create the spontaneity and follow-through medication has taken away. Keep your frustration to a minimum. Remember, your patient-spouse is just as frustrated as you are, probably more so.

It’s important to know where your spouse is coming from. Keep the lines of communication open; ask your spouse how they feel about intimacy (things have most likely changed with this new caregiving arrangement). Share with your spouse how you’re feeling. Respect your spouse. Whether that means honoring the lack of desire, stopping after a period of time when things aren’t going well,  or the reverse; accommodating happily, even when the desire isn’t there. You’re a team. You’re in this thing together.

The most important thing to remember is that you're not alone in your situation. Yes, it’s a little unusual, but it isn’t completely foreign. Talk to your doctor, a professional, or a trusted friend who can give good counsel. And, DON’T give up! We were created for intimacy and touch is very important to the healing process. Try new things; you may just find the thing that works best for you is something you've never done before! 

Fighting Zombies

My husband is a huge Science Fiction enthusiast. So, it is no surprise he equates his Parkinson's challenges to fighting off Zombies.

Each morning he awakes to find multiple Zombies at his door. He must slay each one before proceeding. The first Zombie is getting himself out of bed. Once he has accomplished that, the next one is brushing his teeth, then, walking to the kitchen, and so on. Each time he accomplishes a task or challenge, he has slayed a Zombie and can move on. At the end of the day, if the Zombies haven't gained complete access, it's a victory. For the last 16 years he's been able to fight off the Zombies, and although they have gained some ground, they haven't defeated him yet!

Seeing his daily struggles as Zombies allows Jamey to take one challenge at a time and conquer each without being overwhelmed by the entire Zombie horde at once. I applaud him for finding an inventive way to help him get through each day. Depression is often a symptom of Parkinson's, but Jamey's coping method helps him deal, just a little bit, with the impending Zombie take-over.

After Robin Williams' suicide, Jamey's mom wrote him a short note thanking him for continuing to take on the Zombies each day. That little email did wonders for his morale. The fact that his mother realized the enormity of the Zombie invasion, and praised him for his effort, gave him a boost of encouragement. I noticed a difference in him throughout the day after that little note.

I encourage each of you, especially caregivers, not to ignore the importance of a note or word of support to your loved one. It really does make a difference and can keep depression at bay, if only for a day or two. Your loved one needs you to be their cheerleader and advocate!  Cheerleading is not my strong suit. I tend to put on my caregiving hat and get to my tasks without a lot of pomp. But, after seeing Jamey's reaction to that email, I realized a little cheerleading is important.  Perhaps an encouraging word on a given day is the only thing that will slay a Zombie or two for your loved one and help move them on to the next thing.

Go. Encourage. Fight the Zombies!

Note: Just got the scoop on a new treatment strategy for Parkinson's sufferers. Gel therapy should be available in the next year or so. Check out this link: http://origin.wkyc.com/news/article/232193/3/Parkinsons-pump-offers-steady-relief

Preparing your Home Part III

In a two story house it is preferable for the loved one to stay on the first floor. It helps him/her to feel less isolated and eliminates trips up and down the stairs for you. It prevents potentially serious falls.

Place a single bed in the room so it is accessible from both sides; making up the bed and moving the loved one in bed will be easier this way. If possible, place the bed near a window so your loved on can see outside and feel more connected to the rest of the world. If you need a hospital bed with side rails, rent one from a medical supply company, or if it is going to be long term, purchase one (ask your loved one’s doctor for a reasonable reference or contact the local medical supply store).

I prefer a bell to a whistle

Use a bedside table to keep medications, water, tissues, a whistle or bell (to call for assistance) and any other important items within easy reach. (If having medication within close reach to your loved one is a problem, you may want to have a locked cabinet nearby).

Provide a stereo or sound system for playing “white noise” CDs or soft music. If your loved has dementia, songs from their childhood can be familiar and soothing, and if they suffer from “sundowner” Alzheimer’s, gentle music can sometimes subdue them a bit during that time of agitation.

Television is another way for your loved one to feel connected to the world. By providing a television and remote control in their room, they can feel free to watch what, and when, they want to. I encourage you not to let the TV become their “babysitter” though. There is no substitute for human interaction. Although, I will also add, there are times when you will need to get away from them as much as it is the other way around, so a television can come in handy at times.

Commode with bucket liners

If your loved one can get out of bed but cannot get to the bathroom easily, get a portable commode (contains a removable bedpan) from a medical supply store or borrow/rent one from your hospital). If your loved one is confined to bed, keep a bed pan (and a handheld urinal for a male) near the bed at all times, within reach of your loved one, to prevent embarrassing calls for assistance. Remember to check in often to empty urinals and bedpans.

Be sure the temperature in the room is comfortable and the air circulation is adequate. It is OK to open a window slightly to bring in fresh air, but be sure the room is free of drafts.

Add drapery pins to attach

Blackout curtains or drapes can be a benefit for loved ones who have trouble sleeping. If you cannot afford to purchase new drapes, you should be able to find blackout liners or buy blackout fabric and simply pin it up behind your current draperies, with drapery pins.

            Purchase an overbed table on wheels to use for meals if your loved one cannot join the family for meals. The tables range from $60 to $150 online. If you can get one with a drawer, it will allow your loved one to keep their personal items inside; lipstick, razor, mirror, toothbrush.

Overbed table is a must!

            Have a bucket handy for washing up and sponge baths. Water can be brought to your loved one and they can tend to their own washing if possible. Be sure to provide a couple of large towels; one for drying and one for covering up (it can get chilly during a sponge bath). Body or shower gel is better than soap and an over-sized wash cloth is helpful as well. Any privacy you can allow them contributes to their independence and well-being.

            For chemo patients, or those who deal with nausea, keep plastic-bag-lined trash can handy for emergencies (I also pad the bottom of the plastic bag with several layers of paper towels). The hospitals will give you a kidney container, but quite frankly, those do not hold enough to make them worthwhile.

            There will be others things you discover as you set up your home. Every home is different, and every loved one has special needs. I hope this list gives you a good idea of what is needed and at the very least, a place to start. Happy Homemaking!

Based on Guide to Home Caregiving by American Medical Association. JohnWiley & Sons, Inc. ©2001 American Medical Association All Rights Reserved
Additional editing by Lauri Dilbeck

Preparing Your Home Part II

       I would hope you have already done most of these things in your home whether or not your loved one is moving in. But if not, please look the list over carefully and take safety seriously. As someone who falls often, I know the importance of removing hazardous items. I’m still nursing a fractured tailbone from a fall nearly 7 months ago.

       If your loved one still uses the oven and stove, please be sure they know the rules of the kitchen and how to operate the fire extinguisher!

Modifying the Home Environment:

• Remove obstacles such as extra furniture in the room, and nick knacks from tables.
• Make sure prescription eye wear is up to date, have rails in place where needed. Have easy access to cane, walker or wheelchair.
• Add cushioned safety edges to sharp corners of tables.
• Put casters on front two legs of heavy dining chairs. Note: Only do this if you have thick carpeting that won’t allow table chairs to move in and out.
• Put sticky pads on the underside of area rugs or remove the rugs completely. Removing the rugs is a better alternative, especially for those with gait problems, or who walk with canes and/or walkers.
• If there is an animal in the home, be sure the pet is not able to get underfoot. This is a common issue with pets and loved ones who have difficulty with mobility. A child's safety gate is a good option for a pet who gets underfoot.
• Keep a clear path to all doors that lead outside.
• Set the temperature of the water heater below 110 degrees Fahrenheit. (Remember, the elderly have fragile skin and hot water will be more damaging to them than to younger adults).

Carbon Monoxide Detector

Kitchen Fire Extinguisher

• Keep a fire extinguisher in the kitchen and learn how to use and maintain it properly.
• Repair or replace any electrical appliances that have frayed wires or damaged plugs.
• Check for overloaded electrical outlets. Put in surge protectors where needed.
• Remove electrical cords from underneath rugs or carpet.

Cord covers work great!

• Use electrical cord winders or twist ties to get longer cords out of the way. Nailing cords along the baseboards is also a good way to keep the dangerous cords, tidy and safe.
• Install dead-bolt locks on doors leading outside, and sturdy locks on all windows.Use a heavy dowel on the slider if possible, not only to keep strangers out, but to keep your loved one inside (especially those who roam).
• Have the furnace and thermostat inspected regularly by a qualified reliable heating professional.
• Put a shower or tub chair in the bathing area so if your loved one becomes weak he/she can sit.
• Install a Carbon Monoxide detector in a convenient place.
• Install safety bars in all places where needed.

  

  We have bars ALL over the house

• Install an intercom or purchase a battery operated or wireless intercom system if necessary (you can buy these online starting at about $40).These allow you to find out who is at the door even when you're in the back room tending to your loved one.

• Install locks on cabinets where necessary (some loved ones have a tendency to open the medication cabinet, so please lock it up and distribute medication safely).

  

  Our shower is super safe!

For Parkinson's patients with gait problems, hard wood floors are beneficial. Sticking blue tape every couple of feet horizontally (from wall to wall) down the hall can help them lift their feet over the lines and move along better. The tape tricks the brain into thinking there is something to step over and for some unknown reason keeps the gait continuous. Or, you can run blue tape down the middle of the hallways, parallel to the walls which sometimes accomplishes the same thing.

Note: carpeting may have to be removed if your loved one is in a wheelchair. But, try the chair on the carpeting before making a costly decision like this.

Look for Preparing Your Home Part III coming up next!

Based on Guide to Home Caregiving by American Medical Association. JohnWiley & Sons, Inc. ©2001 American Medical Association All Rights Reserved
Additional editing by Lauri Dilbeck

Preparing Your Home: Part I

             Family members should work together to develop the best plan for their situation. You may have to learn through trial and error what works best for you and your loved one. Although you can’t predict every issue that will come up, it’s a good idea to discuss expectations and potential problems in advance with all members of the family.

Generally, it’s never too early to prepare scenarios, and the best time to begin planning the transition from hospital care to home caregiving, is shortly after your loved one has been admitted to the hospital.

And remember to keep good records so you always have information at your fingertips. Write down what the doctor says and do your own research as well.

First Things First: Consider…

• How long the illness is expected to last
• How your loved one’s condition will improve or worsen
• If therapies will be needed and who will provide them
• What specific medical emergencies might occur and how these emergencies be handled
• Adjustments all concerned will need to make
• What types of care your loved one will require and what is the best way to provide it
• Who will monitor health indicators; blood pressure, blood glucose, medication, etc. and where to record the information
• Whom to contact for advice or assistance
• Who will be part of your caregiving team and what roles they will play
• What type of care is available through acquaintances or family members, and what is available through agencies
• Whether you need any special equipment (oxygen or intravenous feeding, cane, walker) and where to acquire those things
• What physical changes to your home need to be made to promote safety and ease of mobility for your loved one
• What equipment your loved one will need to perform IADLs (Independent Activities of Daily Living; bathing, toileting, grooming, turning over in bed), or will you be performing these?
• Can your loved one perform ADLs (Activities of Daily Living; balancing checkbook, laundry, grocery shopping) or will they be dependent on you for these things?
• Whether pets in the home create any special problems (allergies, cats or dogs underfoot to impede loved one’s mobility)
• What special transportation needs your loved one will incur
• What the cost of your loved one’s care will be and what kind of coverage exists 

Look for Preparing Your Home: Part II next.

Based on Guide to Home Caregiving by American Medical Association. JohnWiley & Sons, Inc. ©2001 American Medical Association All Rights Reserved
Additional editing by Lauri Dilbeck

Making Things Easier

I’ve learned that if I make things easier for my loved ones, I gain benefits, too. Some of these things are very simple but can make a world of difference. Not only do the “helps” prolong my loved one’s independence, but these things can free up some of my time as a caregiver, too.

General

Plastic Stencils make writing easier

1. If writing is difficult for your loved one, provide a plastic lettering guide (template) or stencil. Or purchase software that will write when they speak. (Unfortunately, Jamey cannot use these types of stencils, but he is still able to use a keyboard when his meds are working). Gently push your loved one to do things that are out of their comfort zone. It will help stretch them and keep their brains healthy!
2. Keep a balance between exercise, medication, good nutrition, ample sleep, social life and a good attitude (good advice for both caregiver and loved one).
3. Always check to be sure the pharmacist has given you the correct prescription. Be sure you have enough medication before a weekend.
4. Make sure all the chairs in the home are high enough that your loved one doesn’t have to risk their safety trying to get out of them. Note: Recliners can be purchased in larger sizes with higher than standard seats to make getting up and out a lot easier.  A recliner can also be slept in when your loved one is restless. Recliners and other seating can be custom made to address your loved one’s challenges. There are also motorized chairs and recliners available for getting your loved one up with minimal strain.
5. Remove all area or throw rugs to prevent tripping hazards.
6. If there is a pet that can get underfoot, think of a way to harness the little member of the family. Tripping over a pet is very common and can be disastrous to your loved one.
7. If your loved one is in a wheelchair, put bumpers on doorways and/or corners of walls to prevent injury to loved one.
8. If necessary, install an intercom system or purchase a portable intercom so when someone comes to the door, it is easy to answer, even if you're in the back room assisting your loved one.

Sleeping

9. Put satin sheets on the bed to help your loved one turn more easily, or to help you turn them. (See the link at the right for reasonable Satin Sheets).
10. Try different shapes and sizes of pillows if sleeping is a problem.  Sometimes lying on top of the covers in comfortable clothing can help change the routine enough to ensure sleep (be sure your loved one doesn’t get chilled on top of the covers; sweatpants and socks are a good idea).
11. CDs that make nature sounds (i.e., rain drops, waterfalls, ocean, rain forest) aid in drifting to sleep. The sound of a fan blowing can accomplish the same thing.
12. Provide a wedge-pillow to prop up your loved one while he is resting. Or, purchase a motorized bed that will provide foot and head positioning.
13. Get rid of foot cramps by rubbing against the direction of the cramp. Heat and massage will often help. And, if your loved one can stand, keep a smooth stone handy to walk over or to rub onto the cramping area.



Draw sheets can aid in turning your loved one in bed

14. When you make the bed, be sure to add a draw sheet. It will help keep soiled sheets from touching your loved one's skin, and aid in turning too. Note: if you order satin sheets to help your loved one turn, order an extra flat sheet to use as a draw sheet, that way it won't defeat your purpose.

Toileting/Grooming

15. Buy an electric toothbrush for your loved one.
16. Buy an electric shaver for your loved one.
17. Install safety bars throughout the home, in areas that your loved one will need extra help.
18. Place a seat in the shower area and be sure there are safety bars in all bathroom and tub areas.
19. Install ADA toilets, or provide a portable commode.
20. For female loved ones; fix hair and do whatever makeup is preferred daily. For males, shave and fix hair every day. This will add to a positive feeling and good attitude.

Traveling

21. Go Places…Don’t Hibernate!
22. A plastic bag on the car seat helps your loved one slide in and out of the vehicle.
23. Add a ramp for getting in and out of the house (to avoid steps if they are a problem).
24. If a planned trip is long and your loved one an has issue with incontinence, take along a urinal, panty-liners, or adult diapers.

Exercise

25. Exercise class for both you and your loved one, provides exercise and socialization and contributes to maintaining mobility and a healthy mental outlook.
26. Try a massage periodically (you or loved one).
27. Swimming or stretching in the shallow end of a warm pool is wonderful exercise.
28. Exercising the mind is also good. Read to your loved one, or have them read to you, if they are able.
29. Sing a song with your loved one. Alzheimer’s patients love to reminisce and often have trouble remembering things. But singing old familiar songs can bring back wonderful memories!

All of these things will help you maintain a positive attitude, and hopefully will do the same for your loved one. We must walk a fine line between allowing our loved one independence and taking over where they need help. It will always be a challenge, but the more you do it, the easier it will be! Remember to always ask a medical professional about exercise and lifting.

Did You Know?

As we age we swallow less often which can create excess saliva and drooling (this is more prevalent in Parkinson’s patients). If your loved one is on medication which causes dry mouth it usually isn’t a problem. But if not, give your loved one lemon drops, peppermints, or sugarless gum to chew. This will lead them to swallow more often.

Our stomachs shrink as we get older and therefore we don’t want to eat as much. As long as your loved one isn’t losing weight, there is probably no concern. But, if weight loss is occurring, keep on hand nutrition shakes, protein boosters and fruit for snacking.

Older people tend to drink far less than they should, so it is often a challenge to get your loved one to drink more water. Keep a thermal cup, with a top on it, filled with cold water (or room temp if that is preferred) and set it next to your loved one. As you pass by, pick up the container occasionally. You should be able to feel the difference in the cup’s weight if your loved one is drinking like he should. If not, gentle reminders throughout the day should be sufficient.

If your loved one is going through chemo, they will often lose their taste sensation. Trying to get someone to eat when all they can taste is “cardboard” is very difficult. I know I wouldn’t want to eat if that were the case, and I LOVE food! Find something they can taste—for my mother is was chocolate—and ask the doctor if they can have it whenever they want. Knowing there is something that tastes good coming later, can sometimes encourage eating the “cardboard” first. Yes, it is actually a form of bribery, but all is fair in love and caregiving! 

Men struggle with Dysphagia far more often than do women. Dysphagia is a condition wherein the muscles and nerves that help move food through the throat and esophagus are not working right. It often exhibits itself as choking or trouble swallowing. Sometimes this condition can prevent food from reaching the stomach or even cause food particles to go down into the lungs, ultimately causing pneumonia. There is a special thickener used for Dysphagia patients which encourages the food to go where it is supposed to go and keep the loved one from choking. Ask your loved one’s doctor if you suspect he is suffering from this.

Skin becomes more fragile as we age. Our skin can become almost translucent and paper thin. Always keep soothing hand cream applied to your loved one’s skin (arms and hands especially). And avoid having your loved one do anything that might tear or damage the fragile skin.

Skin can also become discolored and show prominent bruising (in particular for Coumadin patients). Keep track of the bruising and call the doctor if it increases abnormally or moves to other areas.

Remember, these are just suggestions. Always consult your loved one's doctor for unusual weight loss or gain, consumption issues, and all other health iissues. This blog is for reference only (see disclaimer below).