There are a number of reasons to decide it is time to look for a senior care facility. Many times a crisis, such as a fall resulting in injury or an illness, makes you realize Mom or Dad needs help; or perhaps you have taken them or an older relative into your home and the arrangement is less than ideal; or the arrangement may be OK, but you can no longer care for them yourself. You may visit them at home and notice one or more indications they are having trouble taking care of themselves:
- Their home is no longer clean or well-maintained;
- Their personal hygiene is not up to former standards;
- They have lost significant weight, the refrigerator is empty, or it contains spoiled food;
- Pets or plants are not well cared for;
- They seem to have no friends or activities they enjoy doing;
- Their finances are no longer in order, such as cutting back on expenses, bills not being paid, letters from creditors, being preyed on by scammers.
Finding the right place takes a lot of research and consideration. Many people find that the places they like are too expensive and they don’t like some of the ones they can afford. While you can’t remove your own emotional response to the situation, a practical, logical approach can make it feel less overwhelming.
We suggest the following steps:
- Discuss and write down the considerations – geographical area, level of care, lifestyle, reputation, etc. – that are most important to your loved one and other family members who are involved in the decision process.
- Start your research on the Internet and narrow your choices down. Keep in mind that every facility will make itself look wonderful on its own website. There are a number of sites that review facilities you might want to check out, as well.
- Call your top choices and make appointments for tours of the facilities. Visiting will narrow the field considerably, as you observe actual living conditions and learn about pricing options and additional fees that may not be mentioned on the website.
- Download our Facility Comparison Checklist and take it with you when you visit each place, so that you can compare features and pricing when you’re ready to make a decision.
Finding a new home for a loved one who can no longer care for themselves in their own home is a daunting task, but it doesn’t have to be a heartbreaking one. While it is emotionally difficult to accept a loved one’s declining abilities – whether physical or mental – an honest assessment of the kind of help they need is the best way to make sure they are safe as well as happy as they age. Knowing they are safe and well cared for goes a long way towards giving you peace of mind.
According to the Alzheimer’s Association, 5 million Americans aged 65 years and older have Alzheimer’s Disease or related dementia. That means one in 11 Americans over 65 have some form of dementia.
The Alzheimer’s Association estimates that family caregivers spent a combined 17.7 billion hours providing informal care for their loved ones in 2013. This figure is expected to jump to exponentially over the next 25 years. Amid these alarming trends, one thing remains constant: the need for quality, individual dementia care.
People with dementia experience a number of psychological and behavioral symptoms such as difficulty concentrating and unwarranted aggressiveness. Dementia symptoms not only disrupt our loved ones’ livelihood, but are also upsetting to us.
As family caregivers, we may feel caught between a rock and a hard place when caring for an aging parent or spouse with dementia. One of the more challenging dementia care ordeals is dealing with night fright.
Night fright in seniors happens when a loved one abruptly awakens in terror, panic, and bewilderment in the middle of the night. Night fright is common among seniors with dementia and Alzheimer’s disease. Night fright may be associated with agitation, restlessness, and confusion they experienced earlier in the evening. These symptoms may be related to another common psychological condition in seniors with dementia called sundown syndrome, which generally occurs around sunset as natural light fades.
Night fright may also cause unintended harm to our loved ones from waking up frightened and falling out of bed to waking up disoriented and wandering out of the house. Providing the right dementia care is essential in safeguarding their welfare.
Here are 10 other tips to reduce night fright and improve dementia care at night:
- Encourage your loved one to practice good sleep hygiene to help them sleep better at night. When possible, use the bedroom only for sleep.
- Help them take a warm bath before bedtime to help them relax.
- Play your loved one’s favorite music, or calming, instrumental music before bedtime to soothe their mind.
- Get rid of accident-prone areas like flimsy rugs, unguarded stairwells, protruding furniture in walkways, and slippery floors in case they wander in the middle of the night.
- Limit caffeine and alcohol intake to prevent evening jitters.
- Plan their meals and beverages several hours before bedtime to prevent repeated trips to the toilet.
- Remove ticking clocks from the bedroom to maintain a quiet environment.
- Partake in morning and early afternoon outside activities and exercise with your loved one.
- Have an panic plan in place if your loved one wakes up frightened. Practice the plan with them including steps to quell their panic: turning on an easy to reach light, getting to an easy to reach phone, and dialing a familiar person. Write down the steps and number and keep on the bedside table
- Reassure your loved one that your or someone they know is just a phone call away.
Have additional tips to reduce night fright? Share them in the comments below.
Watching your parent or spouse decline from worsening dementia is heartbreaking. Alzheimer’s disease is one of about fifty varieties of dementia, and depending upon the type of dementia and the area of damage in the brain, you will see a variety of symptoms and changes.
Except for some major physical and behavioral markers, there is no way to predict how your loved one will react to this disease or how fast (or slow) they will decline. Therefore, dementia care is an ongoing process of learning to provide the care needed which will help you cope and prevent burnout.
Their Behavior: Generally, short-term memories and those with little emotional relevance are the first to go: a phone call earlier in the day, where the tube of toothpaste is, how to work the new stove, remembering to take a bath. Long-term memories that do have an emotional component are retained the longest, but sometimes people will need a prompting reminder.
Your Action: If your loved one becomes upset by their inability to recognize something they know they should remember, try to change the subject. Like small children, people with dementia are easily distracted and it’s best to do that with something you know will make them smile, such as a joke, funny story, or a suggestion to put on some of their favorite music.
Get used to the fact that you will need to constantly remind your loved one of just about everything. Learning to accept this reality will reduce your irritation with them. Talk to your loved one calmly without barking orders, giving one piece of instruction at a time. Wait for the completion of that task before giving them the next instruction. Never give choices. They will always do better following your stepwise direction. It’s better to say, “Let’s go get you a shower,” than “Do you want a shower or a bath?”
Delusions and Hallucinations
Their Behavior: A common theme is the accusation that someone is stealing from them. This often happens because they can’t find what they are looking for or can’t remember what belongs to them. Many times they will believe they saw someone or something hiding near them. These situations will cause them to become distraught.
Your Action: Always show them you are taking their concerns seriously. Letting them watch you search for what they think they have lost will calm them down and make it easier for you to distract and redirect them to another topic or activity. Or even better, you will find the missing object and put them at ease.
Constant Pacing or Walking
Their Behavior: Pacing is a common activity among people with forms of dementia. It could be caused by confusion or agitation, by the need to move and do something, or it could be a form of repetition they find soothing.
Your Action: As long as it’s not harmful, don’t try to stop them. Instead, make sure they are in a safe to do this, such as a flat hardwood surface. Encourage them not to pace in rooms with rugs or near a staircase. If you find this activity occurs at night, consider their lifetime sleep habits before trying to make them stay in bed. People who have been night owls their entire lives aren’t going to easily go to bed at 9 just because that’s what you as the caregiver wants.
Their Behavior: Many times, physical problems can be the cause of unwanted behaviors. A headache, toothache or even or ingrown toenail are examples of painful situations that will be expressed as agitation. Look for telltale signs such as holding their hand to their head, putting fingers in their mouth, or kicking their shoe off.
Your Action: Your body language and attitude is the most important tool. Keep your attitude positive and loving with a genuine smile. Ask questions and try to understand what’s causing the discomfort. Keep background noise to a minimum, such as the TV or radio, when you are talking. They are so sensitive to loud sounds, it alone can cause unwanted behaviors.
Take your loved one to the bathroom on a schedule of every 2 hours which will prevent incontinence and the agitation associated with their discomfort and unrecognized need to void.
It is distressing to watch your parent or spouse change into what seems like a different person, many times losing all connection with them by the end. The best dementia care means not trying to change the person, but rather provide a loving, safe and supportive environment.
On Monday, we discussed starting the conversation of end-of-life planning. Today, we’ll talk about some specific documents and setting up advanced directives: instructions that doctors, lawyers, and estate planners can use to make sure your wishes are realized.
Advanced Care Planning is the process of discussing your options and sharing your decisions about how you want to be treated at the end of your life should you not be able to speak for yourself. It also allows you the ability to choose a person or persons to speak on your behalf should you be unable to communicate your own wishes.
Developing Advance Directives
There are five parts to an advance directive in Arizona. Each individual may chose as many or as few of the documents to fill out, based on their values, medical conditions, and personal situation.
- Durable Health Care Power of Attorney. A health care power of attorney can be anyone you choose to make medical decisions on your behalf if you are ever unable to do so. This document also gives you the opportunity to decide which decisions the health care power of attorney, or agent, can and cannot make for you.
- Durable Mental Health Care Power of Attorney. This position is similar to the first one, but only has the ability to make decisions about your mental health care and nothing more. This agent may be the same person or a different person from the health care power of attorney. This can be a very important document if you have early signs of Alzheimer’s disease or related dementia, or if you know that it runs in your family.
- Living Will. This document specifies to family, friends, and physicians what type of live-sustaining care you would like in the event of a serious illness or irreversible coma. To fill this document out in its entirety, it is recommended that you talk to your physician about your medical conditions and possible situations that could result from them. Your physician can tell you what your options are so you can make the best decision for you.
- Letter to My Representative. This is a letter that is given to the person you choose to be your power of attorney. It lays what that person’s responsibilities are, what they can and cannot do as your power of attorney, and other important information.
- Prehospital Medical Care Directive (Do Not Resuscitate). While it’s recommended that everyone over the age of 18 have a living will, a Do Not Resuscitate (DNR) directive is not appropriate for all circumstances. This document informs emergency and medical personnel not to use life-saving measures such as CPR. Talk to your physician about whether a DNR is necessary for your situation.
There are many resources you can use to learn more about advance directives. Below are just a few places to start:
- Arizona Attorney General: This page has some more detailed information about life care planning as well as the five documents you can fill in if you chose not to write your own.
- Caringinfo.org: This .pdf answers many common questions about planning and various life-sustaining treatments.
- Put It In Writing by the American Hospital Association: This .pdf has more questions and has a glossary of terms to help you better understand the legalese.
When you are finished, you can give them your family members and physician, and also to the Arizona Advance Directive Registry.
It is a fact of life that we will all come to that day when forced to think about the end of our life. Most people avoid the subject, living life as if there is no end in sight. Like many difficult topics, we tend to put off any discussion to another day. Unfortunately, waiting until the last minute can be uncomfortable and distressing. If you wait too long then connections will be lost, questions unanswered and the burden of making important decisions will fall to the loved ones who most likely won’t even know what choices you would make. Remember, your choices and decisions are only as good as who you communicate them to; share them with your family, your physician and even your lawyer.
Caring for a loved one can be a rewarding experience. Giving back to someone who gave much to you can increase positive emotions and improve quality of life for both of you. At the same time, it’s easy to get burned out when you’re an unpaid caregiver.What starts out as a labor of love can turn into the labor of Sisyphus, condemned to pushing a boulder to the top of a hill, only to see it roll back down again for all eternity.
It’s obviously important to take care of yourself so you have the physical and emotional ability to take care of someone else. Stress, which is nearly universal in caregiving, can easily turn into burnout, when it’s much harder to bounce back. Here are some red flags that indicate you need a break from caregiving.
- Getting easily irritated or angered, both at your loved one whom you care for and at others. You find yourself yelling or snapping at people. You want to hit or throw things. It may even be hard to stop yourself from hitting or being too physically forceful with your loved one. It becomes increasingly difficult to handle obstacles or challenges when they inevitably arise.
- Inability to control your emotional response. You cry unexpectedly or more often than usual. You have feelings of desperation, or have dramatic mood swings, where you feel OK one minute and the next you’re in the depths of despair. If your loved one has a degenerative disease such as Alzheimer’s, another form of dementia, MS, ALS, or Parkinson’s, it’s normal to feel sad as you watch them decline. Depression is a real risk, however, so be careful your sadness is not a sign of clinical depression.
- Inability to sleep, difficulty either falling asleep or staying asleep. Chronic sleep deficiency increases your risk for many other health problems, like cognitive decline (and possibly even Alzheimer’s), memory loss, heart disease, high blood pressure, stroke and diabetes. If you are taking care of a dementia patient, you may be woken frequently at night by their night wanderings, even if you don’t have difficulty with sleeping on your own.
- Getting sick too often. Many people get a minor virus once or twice a year, but if you are catching every new cold that comes around, something is off in your immune system, a sure sign you are under too much stress.
- Increase in physical ailments, such as headaches, joint, or muscle aches that have become chronic or frequent. You may experience new health issues such as chronic headaches, muscle or joint aches, stomachaches or other digestive symptoms; or something you had before becoming a caregiver may become worse. If a condition such as blood pressure that formerly was under control becomes worse, that’s a sure sign you’re under too much stress.
- Complaints from your family. Common complaints from family members include spending too much time away from them, becoming a “control freak,” arguing too much with siblings or other family members about the level and quality of care you provide. You may not even be able to listen to what they have to say.
- Social isolation. Whole days go by without your seeing another adult besides your loved one. You can’t summon the energy to get together with friends; in fact, the prospect just makes you tired thinking about it. You may have dropped out of activities you used to enjoy. You may feel you’re the only one who can take care of your loved one. You can’t relax and you don’t want to accept help when it’s offered.
If you see yourself in some of these situations, you may be approaching burnout. At the least, you are under a lot of stress and you might want to consider what you could do to ease your situation. Caregiver burnout is one of the most common reasons for placing a loved one in assisted living or a nursing home.
You have to take care of yourself in order to take care of someone else. Next week we’ll look at help that’s available from a variety of sources.