Caregiving, The Next Level

Mary’s mom is going into an Assisted Living Center next week. Mary did her homework and finally settled on the best possible place within her budget. Her days of heavy lifting and sleepless nights are over. “I love Mom,” Mary told her sister, “But I just don’t have the strength to do everything that Mom needs anymore.” Yes, Mary knows it is time, and the best thing for Mom too. But it makes Mary feel empty. Lost. Useless. Of course, she will visit and keep her mom company. And Mary knows that the paperwork and financial responsibilities remain. But Mary feels as though she is losing a very demanding job—and one that all in all, she did well. She will no longer be a caregiver.

Wrong! Mary’s duties will change, but she still has an important, and often time consuming, caregiving job. It is common knowledge that patients in care facilities who have a family member involved do much better than those who don’t. If you have a loved one in a care facility, here are some of your many tasks:

Social director. With multiple patients, care staff often have little time for for being social. Facilities usually offer group activities, such as singing, crafts, even cooking, but one-on-one contacts are the ones that are best at keeping a person alert. That’s your job. And it can be a fun one. Once again, you get to be family, instead of caregiver and patient. Also invite friends and family to come visit. As family caregiver, your are the most important visitor, but others add variety and fun.

Observer. Come at odd times to the facility to check on care. Is s/he being moved regularly if s/he can’t move easily? Are there any unexplained red spots or bruises? (See last week's blog) Are any treatments being done properly? Is s/he being taken out for exercise, social events, etc.? Are needs (bathing, toileting, dressing, etc.) being met in a timely manner? Is s/he being helped with feeding in a way that works for him? How do the various staff interact with him/her? When you see something that isn’t working, talk to the staff. You’ll get best results if you ask assuming that they care about their patients and will work with you to fix the problem. Usually they will. If they don’t go to their boss.

Medications manager. Usually there is a facility physician who is in charge of this. But it is your job to review your loved one medications regularly and ask questions. Insist that no changes be made without consulting with you first. Be very aware that during a hospital stay, medications may be dropped. If they aren’t added back upon your loved one’s return to the facility, ask why. Be especially diligent when important staff changes happen. Your loved one’s care can get lost in the cracks.

Case manager. The facility usually has one of these too. Even so, request that they consult you about any major changes to your loved one’s care. Also, you will probably still have to make doctor’s appointments and get your loved one there. Always go with--don’t leave this to staff. You still must take care of many of the insurance documents and other legal papers too. Then there are the errands to run for things that just make your loved one’s life more pleasant—lip gloss, new underwear, a book.

Emotional supporter: This doesn't change—and it is perhaps the most important task of all. Your loved one still needs your attention, your loving words. Your are the stability of their lives, the connection between what is and what was. Make a point of touching, hugging and kissing. Yes, the staff touches a lot, but it usually, task oriented. Your job is to initiate caring oriented contact, to listen, to be a sounding board for complaints, a shoulder to cry on, and a friend to laugh with.

For more information about Lewy body disorders read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other LewyBody Disorders

Music, The Great Motivator

Most of us have seen Henry on youtube. He’s this elderly gentleman who can’t lift his head or remember anything until a nurse puts headphones connected to an iPod over his ears. Henry “wakes up” and begins moving and singing with the music. Even after the music is over, he can talk clearly and intelligently about things in his past. He says music gives him the feeling of love and romance, that it makes him feel holy.

Henry’s awakening was a part of a project that provides iPods to people in nursing homes and information to all of us about how helpful music is with people whose dementia has isolated them inside their heads. The documentary this group did is worth watching. You can learn more about Alive Inside and see Henry in the trailer here, The full-length documentary is on Netflix.

Most caregivers are well aware that as thinking abilities fail, emotions remain. Music serves as a connection between emotions and memories and enhanced thinking until very late in the dementia journey. Personalized music can be more effective than any medication in helping a person reconnect with their vital essence—to come alive. Yet it is extremely inexpensive and easy to use.

Our May 2, 2013, blog goes into detail about how music wakes up memories and increases alertness. It offers several suggestions about how to add music to your loved one’s routine. Here are some ways that music can increase awareness and quality of life (Alzheimers.net):

• Pairing music with everyday activities helps people develop a rhythm that aids in the recall of the memory of this activity, improving cognitive ability over time.
• Singing sessions engage more than just the left, more creative, side of the brain. Listening to the music activates the right, more logical, side of the brain as well, so that thinking abilities improve—for a while at least.
• The rhythms of music can improve physical abilities and increase energy. People who can barely move become able to dance and move to the rhythm of the music. Depression often decreases and motivation increases.
• Being able to sing and/or dance with loved ones adds a closeness that is often lacking as dementia takes away the ability to share emotions. Dancing can lead to hugs and kisses and even more memories as well as feelings of security.
• Music can shift mood, manage stress and stimulate positive interactions because it requires little or no thinking, it doesn’t need cognitive functioning. It can calm or energize, depending on the song.

The first step for introducing music into your loved one’s life is to develop a playlist of favorite songs. Here are some suggestions:

• Start with music from your loved one’s teenage years, through about age 25.
• Choose the type of songs that have most importance to your loved one. For example, if church was an important part of life, add some hymns to the mix. Was opera important or not? Westerns? Mix in some instrumentals but make sure many of the songs have words.
• Make sure the mix includes a variety of stimulating, laidback, romantic, sad and happy music. Both may trigger emotional connections.
• Include are some “sing along” classics, that your loved one can join in with.
• Put the music in an iPod or mp3 player with earphones. The big over the ear type of earphones is easier for the person with dementia to use than ear plugs. Use the wired type; Bluetooth connections might be too difficult to maintain. A simple music player that turns on and off with one switch is also an option for someone living at home or in their own room, where invading other people's hearing space isn't an issue.

Then the fun begins. Your loved one may respond positively soon after you put the earphones on, but if that doesn’t happen, don’t give up. It can take several sessions before a visible reaction occurs.

For more information about Lewy body disorders read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders

Pressure Sores

As your loved one’s physical condition deteriorates, he will spend more and more time in a wheelchair and in bed--and become more at risk for pressure sores. These are sores that develop when the blood supply is cut off to an area for more than two or three hours. That becomes an issue when a person cannot move easily without help. The areas of highest pressure are: The hip, lower back or buttocks, shoulder blades and spine, back and sides of head, rim of the ears, heels, ankles and skin behind the knees.

Pressure sores (bedsores) are more common in a care facility than at home. That’s because a) a person is usually less mobile by then, and b) they aren’t getting the one-on-one attention they got at home. However, they CAN happen at home, especially if a caregiver doesn't know to be alert for early signs. Even with the best of care, pressure sores are a risk for people with Lewy body disorders—or any debilitating illness.

Prevention. The first line of defense.

The surfaces. The least expensive, and possibly the best mattress for someone with limited movement is a mattress made of medical quality high-density foam. You can also cover an existing mattress with a pad of the same quality. An egg-crate foam pad does not provide adequate protection, even if it is quite thick. Other mattresses and pads are those made with gel foam, alternating air and sheepskin.  Click here for more information about all of these.

If your loved one is in a wheelchair, there needs to be a pad of similar quality there too. Click here for a good article on seat cushions. Don't forget the backs of the legs if your loved one sits in the chair with the feet raised.

Movement.  No matter what kind of surface protection you use, your loved one’s position needs to change every two to three hours. As he becomes less able to do that, it becomes your task, or if he is in a care facility, the care staff’s task. Make sure it happens. Once a pressure sore starts, they are hard to cure. This doesn't necessarily mean a major shift each time, as from one side to the other, or from side to back. It does mean that the areas of the body experiencing the most pressure need to change.

Massage. Massaging the “high pressure areas” at least once a day helps to maintain good circulation and tougher skin. More often is beneficial. Click here to go to a website that offers suggestions about the types of healing oils to use with the massage.

Nutrition. The skin needs adequate proteins and fluids to stay tough. Add healthy oils (fish or fish-oil supplements, olive oil, avocados, flax seeds) for elasticity and strength.

Observation. Even with the best treatment and the most careful prevention, pressure sores can happen. Make a point of actually looking at all the major pressure points at least once a week, and daily if possible.

“I cared for my dad for a couple of years. Checking for pressure sores was a part of our bathing process. When Dad entered an assisted care facility and bathing was not longer my job, it felt intrusive for me to look. I assumed that the staff was now checking—but apparently they weren’t. Dad developed an awful bedsore on his tailbone. It became infected and I believe that it led to his death.” Janice

Yes, the care staff should, and usually do, check. However, this are too serious to leave it to them entirely. (Remember, they have many other patients to care for, and things get missed occasionally in the best of facilities.) It may feel intrusive, both with a patient and with the staff, but a caregiver needs to be proactive. You need to look. If the skin is in good condition, say so—tell the staff how pleased you are. Let them know you do check! If it isn’t, ask that something be done immediately. Then follow up.

Treatment

Early sores. A pressure sore starts out as a mild redness that doesn’t go away. The skin may be tender, and warm or cool, compared to the surrounding skin. If you catch it then, it is easy to fix. Avoid putting any pressure on that spot until it returns to normal skin color. Additional massages with healing oils will speed the time. If the sores reappear, talk to the doctor or a physical therapist about ways to avoid this.

With broken skin: Once the skin is broken, you need to contact the doctor for treatment immediately. This will include applying a dressing that will keep the area clean and moist. Of course, there should be minimal pressure to the area until healed. Medication will depend what kind of infection, if any, is present. With deep sores, surgery may be required to clean out the dead tissue.

As you can see, pressure sores are no little thing when they are not found and dealt with quickly. A proactive caregiver can make sure that they are found early and treated appropriately.

Click here for more about pressure sores and their care.

For information about Lewy body disorders read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other LewyBody Disorders