There are more than 70 different conditions that result in the loss of memory and logical thinking that we call “dementia.” Alzheimer’s is the most common. Other conditions include stroke (called “vascular dementia”), Parkinson’s, and prolonged alcoholism.
The advanced stage of dementia
Most dementias are progressive, meaning they get worse over time. While your loved one’s condition may not be curable, there are things you can do to make daily life more pleasant for all of you. The articles below are written for families dealing with the more advanced stages of dementia.
You don’t have to do this alone. At Four Seasons, we understand dementia. Give us a call at 828-692-6178, or toll-free at 866-466-9734. We’d be happy to help you with resources for you and for the person you care for.
Like any older adult, your relative with dementia can have pain from arthritis, a toothache, a sore knee, sciatica. The difference is that his or her pain may go unrecognized and untreated. The same condition that is clogging your loved one’s brain makes it difficult for him or her to identify or describe pain. Even if you ask directly, “Are you in pain?”, very likely your loved one will not be able to tell you. The result is unnecessary suffering.
Sudden changes in behavior may signal that your loved one is hurting somewhere.
Suspect pain if you notice changes in your loved one’s
Look for the source of pain
If you sense something is wrong, look for a possible source. Is there a pin or sharp object somewhere? Perhaps his or her shoes are too tight. Maybe there’s a bladder infection. If the behavior persists, consult your health provider. You may find our article about managing pain to be a useful supplement to treatment the doctor suggests.
Ask for a palliative care consult
You can also ask for a consultation with a Four Seasons palliative care physician. These specialists focus on the relief of pain in all its forms. Give us a call at 828-692-6178, or toll-free at 866-466-9734.
If the person you care for has dementia, you may find his or her sudden emotional swings more confusing or troublesome than the forgetfulness. Although you can’t completely prevent outbursts, you can reduce their frequency and their intensity.
When a mood swing or difficult behavior occurs, ask yourself, “why now?”
When responding, avoid correcting, reasoning, or bringing them into “reality.” It will just frustrate everyone. Acknowledge your loved one’s feelings. They are real to him or her.
When caring for a relative who has moderate to advanced memory loss, it can sometimes seem like they have disappeared into their own world. How do you create connection and support their quality of life when they seem capable of so little?
Music is proving to be one good answer to this challenge. Research shows that music is processed in parts of the brain that remain lively long after a person’s ability to “name that tune” is gone. Hearing familiar songs brings up old memories and reconnects a person to his or her sense of self and to times past.
Music is the universal language. It can be a fun and valuable part of your caregiving toolkit. For instance, you can
You might collect some of your relative’s old records (or tapes and CDs) and play songs as needed. Or compile music on a portable music device, for example an iPod or other MP3 player. Then your relative can listen and move about with headphones.
For most purposes, strive for music that your relative knows and loves:
Observe your loved one’s response to the music and make changes as needed.
Everyone understands a hug! What your loved one may lack in the ability to talk, he or she certainly can absorb in the form of love and affection. In fact, calm, nonverbal reassurance is one of the best gifts you can give your loved one at this stage.
Draw upon the five senses
The advanced thinking of the brain is damaged. But your loved one probably still relates to touch, taste, smell, sight, and hearing. Think about pleasant activities that include these different senses. When outside, for instance, remark upon the warmth of the sun, the smell of the trees, the song of the birds.
You can reinforce love and security with little gestures of affection. Rubbing lotion on hands or feet, stroking the arms, massaging the scalp, holding hands.
Keep life simple and slow
Your loved one has a condition that makes it hard to process new information. The answer? Make life simpler! Remove clutter. Reduce rush. Create routines. The less your relative has to think through, the less likely he or she is to get confused and overwhelmed. Comfort is the name of the game.
It may be difficult to know what your loved one would like, but look for clues in behavior. Think like a detective. Be flexible. For instance, your mother may pick up a grandchild’s stuffed animal or doll and carry it around. Maybe she would like one of her own. Fond memories of caring for a small being reach deep into the heart. Allow that comfort and connection.
In a different vein, bathing can sometimes be a struggle. A shower is noisy and the chill of getting wet is unpleasant. Try a sponge bath in a very warm room. Keep your relative covered over most of the body and expose only that part you are cleaning. Dry immediately and then move to a different part of the body. It may not be what you think of as a bath, but it gets the job done well enough. And no struggles!
Make the most of family visits
If family is coming to visit, you may be feeling both excited and concerned: excited about brightening your loved one’s life with family gatherings and activities. Concerned that your loved one may become tired or anxious with the extra activity.
It is wise to think ahead about factors that could add stress and undermine the pleasure. These tips can help ensure fond memories of the visit.
Take Care of Yourself
Easy to say. Hard to do. But oh so essential!
Research has shown that the more stressed you feel as a caregiver, the more likely you are to develop health problems of your own. Your family member needs you! If for no other reason, you need to keep yourself healthy in order to care for your loved one.
Write yourself a prescription for
Most people near the end of life will need 24/7 care. They just can’t live on their own anymore. This is especially true for persons with dementia. The damage to the brain is just too great.
As a family caregiver, during the last months and weeks your focus will be on providing comfort care. Keeping your relative safe, clean, and content is the highest priority.
The ability to speak and understand is so impaired that conversations are not likely. That doesn’t mean that you can’t talk. Pointing out the smell of a lovely flower or the return of the birds at the feeder is a cheery uplift. Your relative will understand your tone and happy intent. There just isn’t likely to be much of a verbal exchange. Instead, focus on communicating nonverbally and using all the senses. Touch and affection are especially meaningful.
Eating and swallowing
The act of swallowing is more complicated than you might think. Eventually we all lose the ability to swallow before we die. Your loved one’s brain condition may make this happen sooner than most.
Loss of appetite
It’s as though your loved one just forgets to eat. And it may be that as they near the end, they simply don’t need food. It’s a natural part of the body letting go. Here are things you can do if you believe they are truly hungry:
In the final weeks or months, your relative may lose control of bladder and bowel. You may need to actively walk your loved one to the bathroom, help them remove clothes, and guide them through the process. Here are some tips to make this situation easier on you:
Difficulty with balance
Walking will likely become very stiff. Your relative will shuffle more than stride. The part of his or her brain that deals with balance will be affected. Your loved one is more vulnerable to falling. A fall can result in a broken hip, a hospitalization, a hip replacement, and several weeks in a long-term care facility. VERY disruptive! Painful, too.
Here are some things you can do to reduce the risk of a fall:
Eventually your loved one’s physical abilities will become so limited that he or she may spend most of the time in bed or in a chair.
Confusing night with day
People with dementia often shift their internal clocks into reverse. They sleep during the day and are up at night. This can wreak havoc on a family caregiver!
Hallucinations or delusions
The person you care for may see things that you don’t see. He or she may hold on to beliefs that are not founded in fact, such as fear that someone is trying to break into the house. Or your relative may be so disoriented that he or she is living in the past. You may be confused with a spouse or sibling, especially if there is a resemblance from youth.
Telling your relative that their visions or beliefs are not true will only breed mistrust. Instead,
The last weeks of life
People dying with dementia go through the same bodily processes as people who are dying from other conditions. It’s just a bit more difficult to provide care because your loved one is unable to offer much in terms of feedback or communication.
Ask about hospice
Four Seasons Hospice and palliative care specialists are the experts in relief at the end of life. They understand the needs of the dying and are there to support family members as well. There is no charge for this service. You don’t have to go through this alone.
Most families who get hospice support say they wish they had done so sooner. Give us a call at 828-692-6178, or toll-free at 866-466-9734.