Even with normal aging, bathing becomes more difficult as we get older. However, the particular challenges of Alzheimer’s disease make this everyday ritual all the more nerve-wracking. If you’re finding it almost impossible to get mom or dad squeaky clean, read on for some advice.
First, consider why bathing has become more difficult. Does mom think she just showered an hour ago when in reality it’s been a couple days? Does dad not know what to do once he’s in the tub, and thus gets frustrated? Does your loved one not know what’s happening and become fearful once they’re all wet? Once you’ve figured out why they’re avoiding this activity, you can better address the problem.
If memory-related issues are the challenge, try to make taking a bath fun. For example, let mom know that you’ve planned an enjoyable outing where she’ll need to get dressed up, so that’s the reason why she needs to take a bath “again.”
If your loved one is fearful or uncomfortable when taking a bath, see what you can do to correct this. Turn up the heat if the room is too cold, or install grab bars so that your loved one can support themselves. Stools for the tub and hand-held shower heads are also popular with the elderly. As you help your loved one, go slowly and explain what you’re doing. The bath will be much less frightening for them if they know what’s coming next. If your loved one is very frightened at bath time, sponge baths may be your best bet. You may also want to purchase some dry shampoo so that you don’t have to get them in the bath as frequently.
Finally, consider whether your own expectations of cleanliness are part of the problem. Though the norm now in 2013 is to wash up daily, when your loved one was younger this wasn’t always the case. For example, in rural areas 75 years ago running water was a luxury, and many farm families took baths once per week. So keep in mind that your loved one may not be used to taking baths as often as you think they should, and that a bath every few days may make them a lot less stressed without causing much real harm.
Making bath time a comfortable and welcome experience for seniors with Alzheimer’s is a challenge, but with some adjustments it can become a manageable task.
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An Alzheimer’s diagnosis challenges everyone in the patient’s family. Teenagers may sometimes seem to be wrapped up in their own worlds, but a grandparent who has Alzheimer’s disease can be very troubling for them and significantly affect their lives. Of course, it goes without saying that when a teenager’s parent is diagnosed with Alzheimer’s, it is all the more devastating. Teenagers are likely to need some help from older members of the family in understanding the disease and what they can do to cope.
First, reassure your teenager that the emotions that they’re going through – which may include fear, regret, confusion, and anger as well as sadness – are all normal responses. It may be helpful for them to hear that this will be a difficult time in the family, and for you to acknowledge that this experience is a hard one for them specifically. And of course, it may be good for them to know that they are far from being the only teen in the world dealing with a grandparent with Alzheimer’s, even if none of their friends have any experience with the disease. If there’s no support group in your area that they can turn to, you may want to point them to the website of AFA Teens, a branch of the Alzheimer’s Foundation of America. There they can find articles written just for them, a community message board where they can connect with other teens, and numerous other resources.
One of the most useful things you can do is to explain to your teenager how to communicate with their grandparent. The following are some tips you can pass along to them:
- Approach a person with Alzheimer’s from the front, so that they are aware someone is coming.
- Use their name to get their attention.
- Ask questions one by one, rather than giving them too much to think about at once.
- Maintain eye contact.
- Speak clearly and not too fast.
- Remember that if they forget your name, it says nothing about how much they love you. Just be patient and tell them who you are.
- Use a voice that is gentle and kind.
- Smile and use hand gestures and other body language. This sets a positive tone and makes you easier to understand.
- Help grandparents do some basic, manageable chores. The feeling of getting something done and being useful can be very therapeutic.
- Ask them questions about the distant past, for example: “What was your life like when you were my age?”
- Listen to your grandparent’s favorite music. This may also get them talking about the past.
- Go through family photo albums, especially older ones.
- Play a game together or work on a puzzle.
- Read them something that they might enjoy.
Part I of this series covered the emotions you might experience when putting a spouse into memory care.
When your spouse moves out of the home you’ve shared and into memory care, you’ll need to work on building a new relationship, one that may not be the same as the one you’ve grown used to, but can still give you a connection to your life partner.
You may find that your spouse no longer knows who you are. As heartbreaking as that is, they likely can still recognize you as an important person in their life. Don’t worry too much about convincing them of who you are, as this will likely only lead to frustration. Regardless of whether they know you as you, you’re still important. You’re probably the one they see most often, and they know that you care about them a great deal. It may be hard to accept, but know that that might be the highest honor your spouse can give you in their current state. Your visits, even if your spouse isn’t aware of them or doesn’t register their significance, are now the most important way of honoring your marriage.
It’s possible to find new ways of enjoying intimacy with each other. A good care facility should give you ways of having uninterrupted time alone. Furthermore, now that you no longer have the burden of being your spouse’s primary caregiver, you can focus on the relationship the two of you have. You can be there for them in other ways beyond taking care of basic functions. You may even find that this new focus on love itself, without day to day hassles, brings you even closer than you were before, and eliminates feelings of guilt and resentment.
Though it’s important to nurture your marriage, it is also crucial during this time that you care for yourself. While your spouse was still at home, you likely put off your own needs and desires, and now is the time to remedy that. Make sure that you address any of your own neglected health needs, both physical and mental. As you probably know, you can only help someone else if you help yourself first.
There is no cure for dementia, but despite this a move to memory care can result in healing for both of you. You may not only be caring for your loved one’s condition, but also for the health of your relationship.
We all agree that marriages that have lasted decades are precious. These couples have come to know each other in ways so intimate that their other relationships pale in comparison. When one half is diagnosed with dementia and moving to a memory care facility becomes necessary, the separation is of course heartbreaking. Though there may in part be some relief on the part of the spouse who was serving as a caregiver, such a drastic life change requires much strength and bravery from both.
This change often comes quite suddenly, and can be overwhelming. Possibly it was precipitated by an emergency hospital visit or a frightening incident at home. Indeed, this may be the most difficult challenge a couple’s relationship has ever faced. The most crucial time is the first few months, as they enter into new and unknown territory.
The following are common emotions and experiences you may have during this time:
- A sense of loss of control as you are no longer responsible for your spouse’s day to day care
- Struggles with how to handle a sudden increase in free time and an empty home
- Guilt at being unable to continue to care for your spouse at home
- Anger and despair that the life you shared, and your closest friend, is gone
- Fear about what the future may hold
- Second guessing the decision you’ve made
If your parent has just been diagnosed with Alzheimer’s disease, it’s a confusing time for your family. One important item to add to your to-do list is to plan to have a talk with your parent’s doctor about their condition. Below are four important questions you’ll want to make sure you include.
Keep in mind that in order to have this conversation, your parent will need to let the doctor’s office know that you have permission to discuss their health matters.
1. Why have you chosen a diagnosis of Alzheimer’s, rather than another disease?
This question will help you better understand your parent’s illness. It can also be valuable in cases where family members or your parent wants to deny that they have the disease. Find out what signs demonstrate to the doctor that this is Alzheimer’s and not another disease or another form of dementia. You’ll also want to ask how your parent’s symptoms differ from the normal forgetfulness and confusion that can come with aging.
2. What medication is available that might help?
Prescription medication is available that can help slow the progress of the disease or alleviate symptoms. However, not all patients respond to these aids, and the doctor may not think any of them are appropriate for your parent’s particular situation. Also know that at this point there is nothing that can be done to reverse the progress of the disease or to cure your parent.
If the doctor does recommend medication, ask how it works and how it treats particular symptoms. Also make sure you understand the side effects, and what to do if your parent takes the medicine incorrectly or misses a dose. The doctor may be able to offer suggestions about how to make it easier for your parent to keep track of their drug regimine.
If you or your parent is thinking about trying herbal remedies, be sure to include these in the conversation as well. The doctor may be able to share information with you that you haven’t previously considered, such as the latest research. He or she can also let you know if herbal remedies would be wise for your parent’s individual situation. For example, there may be harmful interactions with the medicine your parent is currently taking.
3. Are there clinical trials we can participate in?
By participating in research studies on new treatments, your parent may be able to receive cutting-edge care for free. However, these arrangements are not without risks. Your parent’s doctor can help you determine whether volunteering in clinical trials would be a good idea.
4. How can I reach you if I need you?
This may be the first time you’ve had any conversation with your parent’s doctor. Make sure you know the office’s procedures for getting in touch with the doctor. Does he or she take questions over email? What should you do if your parent is having a medical emergency and the office is closed? Having the answers to these questions can ease your mind greatly and help you prepare for the unexpected.
One of the most tragic aspects of dementia is watching a person who you once knew to be capable, independent, and thriving now have difficulty with basic tasks and revert to a childlike state. There’s often great pain as your loved one knows that they’re regressing but is unable to regain the abilities of their younger self. It may seem like this decline is out of anyone’s control, but there are some ways that you can help to lessen its sting.
First, pay attention to how you’re speaking to your loved one. There’s a tendency for us to talk down to the elderly and treat them like children. Are you being condescending? It may help to separate the person’s illness, which may result in strange and childlike behavior, from who they are essentially as a person. Mom is still there behind her dementia, and you want to honor her. Also think about your vocabulary. Are you using words that you might use with a child but not when talking to your loved one before the onset of dementia? Try calling adult diapers underwear or the “potty” the bathroom or whatever your loved one has always called it.
In conversations, avoid putting your loved one on the spot by asking questions they may not be able to answer. Try to stay away from facts that can be wrong or right, and instead ask how they feel about something. For example, if someone who doesn’t know your mother asks her how many grandchildren she has, redirect the conversation by getting her to talk about how much she loves them instead.
Many caregivers strategically use what they call “therapeutic fibbing” to help their loved ones. For example, dad insists he wants get in his old boat and go fishing by himself the way he used to. Don’t tell him he’s not capable of going out on the water on his own and his boat has been sold anyway, as this will likely make him feel upset and depressed. Instead, you can tell him today’s not a good day because there might be a thunderstorm coming, or that the boat’s engine needs to be repaired.
Each and every one of us needs respect and to feel important. Try to encourage and reassure your loved one that they have value as much as you can, and speak with other family members about doing the same. Your loved one may no longer be the exact same person they once were, but with a little cooperation and assistance from those around them, you can minimize embarrassing situations and despair.
An Alzheimer’s diagnosis can be isolating, both for the person with the illness and for their caregivers. Illness can often create distance between those who were once close, and the nature of Alzheimer’s disease compounds the problem. Others are unsure if the person will remember them or if they’ll behave inappropriately. Still others may remain in the person’s life, but not acknowledge the disease at all, and thus leave a big silence about a major life event. Many people who suspect they have Alzheimer’s avoid an official diagnosis because they fear the effects on their social world and the painful feelings of rejection and loneliness that would come with it.
However, it is vital that patients get a diagnosis so that they can receive proper care. If someone close to you is going through this important turning point, here’s how you can help.
Listen before judging. A time like this is ripe for family conflict. Should the person get diagnosed and when? If they do have Alzheimer’s, how will the family plan for the future? It may be that the Alzheimer’s patient has disagreements with the rest of the family, or people within the family are fighting among each other. You will have your own opinion on the issues at hand, but make sure you’re hearing out the other side and giving their point of view fair and compassionate consideration. Hold back on stating your viewpoint and ask others for theirs first, to make sure they have a chance to give input. A third-party mediator may be able to help if you worry that conflict will get out of control.
Be supportive. One of the best things you can do for your loved one is to help them think through all the choices they have to make at this time. This may require you to keep your own emotions in check at a time when you might be feeling a lot of fear, so it may not be easy. Keep in mind that your loved one will likely be afraid of seeming to be needy or a worry-wart. Encourage them to talk through their concerns rather than keeping them private.
Stay calm. At this time it’s very important to be patient, and not all of us count this as one of our strengths. But keeping your cool can go a long way towards maintaining a positive relationship with your loved one that will keep them open to your much-needed help. Remember that pointing out that you were right or expressing negativity may not be the most productive course of action. Put a focus on keeping a good relationship.
Using these skills will put you in a position not only to support your loved one, but also help you bridge the gap between them and family and friends. You can play an important role in keeping the peace.
One of the most difficult dementia behaviors for caregivers to cope with is false accusations. We’ve all had the experience of losing track of something, thinking someone must have taken it, and then later finding the object and discovering we were mistaken. Dementia patients, with their short-term memory problems and tendency towards paranoia, are all the more prone to these kind of misunderstandings. Because so much of their world no longer makes sense, they have a need to explain things and are unable to accept that the strange occurrence may be due to their own actions or perceptions. Is mom’s favorite sweater missing? Horrifying as it may sound, to her the most likely explanation may be that you stole it! They are also grappling with the insecurity that comes with old age, so the “lie” may be an unconscious attempt to preserve their dignity. Dad can avoid the embarrassment of misplacing his watch if he believes the aide stole it.
Mistreatment and abuse of elders certainly does happen. But perhaps more often, the wrong exists only in the senior’s mind. What’s tragic is that these accusations are often leveled at loved ones and caregivers who are trying hard to make sure the senior is safe and comfortable.
How can you cope with this difficult situation? Here are some suggestions.
Bring in someone to help you. Find a third person to help you explain yourself. It may be a friend of your loved one’s, a staff member at the assisted living facility, or another family member. Seeing that someone else will back you up may help your loved one realize that they’re placing blame where it doesn’t belong.
Seek advice from a senior care counselor. An expert in senior care can teach you good ways to respond to your loved one. You may want to start with the Alzheimer’s Association’s 24/7 Helpline at (800) 272-3900.
Keep good financial records. Accusations often have to do with money. Being able to show documentation that proves what’s going on with a senior’s finances can help straighten things out.
Bring a family mediator on board. Sometimes within families there can be confusion about what to believe. A mediator can help everyone sort through the issue as calmly as possible.
Consult an elder care lawyer. This is only for extreme situations, but especially with accusations of abuse or major financial wrongdoing you may need to take serious measures to protect yourself.
Before you take any major action to address the problem, remember that your loved one may forget about it the next day and display no ill will towards you. In the strange world of dementia, sometimes what seems like a serious problem will simply evaporate. And always remember that such behaviors are caused by the disease, and often mean nothing about how caring or devoted you’ve been.
Caring for an ailing loved one is demanding, time-consuming, and quite stressful. Often, caregivers spend a great deal of time making sure their loved one’s needs are met and their affairs are on track. What often goes quickly out the window? The caregiver’s own needs. The following are ways to detect if you, as a caregiver, have neglected yourself to the point of burnout.
Isolation. As human beings, we thrive upon healthy relationships. When you find yourself regularly failing to engage in healthy social interaction–even with your own friends and family–this may be a huge signal that caregiving has begun draining you. Avoiding calls from people you enjoy, making excuses for not going out, etc… can indicate you may be well on your way to isolating yourself from others, which is never good.
Feeling Overwhelmed. Caregiving can be an emotional rollercoaster for sure. There is the physical toll of spending so much time attending to the needs of your loved one. Further, there’s an emotional toll that comes with facing the shift in relational roles, seeing both physical and emotional decline in your loved one, and having to face day-to-day tasks which reinforce that life as you have known it has changed.
It is natural to grieve, especially at the beginning of your caregiving experience. Frustration can arise. Anxiety and exhaustion can arise. But over time and left untreated, those feelings can lead straight into depression. If you become angry to the point of wanting to hurt your loved one or even yourself, get help fast. Your doctor should be able to diagnose whether there is a medical condition driving these symptoms. If medical challenges have been eliminated as a probability, you may have reached the point of extreme burnout and may possibly be experiencing depression.
It is important to remember that while you serve as a support system for your loved one, you will also need to create a team of others who can step in to help. Being kind to your loved one is important, but it is also important for you to be kind to–and eliminate excess pressure on–yourself.
Loss of Interest. One of the biggest warning signs of depression is loss of interest, especially in things that were once a huge source of happiness and enjoyment. When your hobbies, big and small, no longer inspire you… you may need help.
Significant Changes in Your Sleeping or Eating Patterns. Can’t sleep at night? Can’t get enough sleep, no matter how long you’ve been in bed? Binge eating or hardly eating at all? Major shifts in your habits generally indicate huge shifts in your stress levels and turmoil in your emotions.
Ceasing Your Exercise Routine Despite Enjoying It Before. Exercise is one of the best stress-busters available. It leaves a person invigorated and energized. So, when you used to enjoy exercise and suddenly stop, start again! The endorphins released while you’re exercising will relieve tension and help elevate your mood, plus you will get a better night’s sleep.
Failing To Keep Up Your Appearance. Unfortunately, many caregivers fall into the mode of caring for a loved one so much that simple grooming (haircuts, manicures, etc…) become neglected. Some who once were fashion-conscious and took particular efforts to care for their appearance can suddenly become apathetic in this area. Generally, your outward appearance reflects what’s happening inside. This challenge may require some input from others you trust–close confidants, social workers, or healthcare therapists can help you sort things out to decide if you’re experiencing burnout and if additional help is necessary.
Frequently Susceptible To Illness. If you catch every cold or flu that comes your way, and especially if you cannot shake the cold once you get it, your immune system is likely compromised. Our bodies are not created to handle excessive stress for long periods of time. If this is you, caregiving could be getting to you.
Take these symptoms seriously. You can only be a good caregiver for your loved one if you yourself are healthy and happy.
Many of us know that living wills are a smart decision, but even with this document in place many find that making medical choices for a loved one is still complicated in practice. This post discusses some of the common problems with living wills and steps that you might be able to take to make sure that your wishes are followed.
The living will document was designed to give the patient the right to determine–ahead of time–the type of medical care desired in the event he or she is unable to communicate those wishes. However, the language commonly used within a living will (which is also referred to as a substantive or instructional advanced directive) tends to be rather vague, often lending itself to interpretation. For example, in this age of advanced medical technology and cutting edge treatments, verbiage such as “little to no chance of recovery” is becoming obsolete.
Some living wills, indeed, spell out possible scenarios and the patient’s desired outcomes for each scenario. While this is helpful, with medical technology evolving at its current rate, listing every alternative is virtually impossible, which then forces medical professionals and/or family members to then determine what’s best for the patient. Making matters even more difficult is the fact that for many what they want changes following an illness or hospitalization. One research study on medical decision-making revealed that three of every 10 patients change their minds about the type of care they desire, but those changes are not often reflected as quickly on the living will.
So then, we’re back to the challenge of interpretation. It’s important to note that even when the patient’s wishes have been clearly written out, family members are still faced with making these decisions at a very emotional time. Arguments often arise between family members in the midst of the crisis about what their loved one really wanted, when their energies would often be better utilized in coming together to support one another as well as the patient.
According to a February 2001 study published in the Archives of Internal Medicine, family members presented with various health crisis scenarios were about 70% accurate in predicting their loved one’s desires if faced with the scenarios given (whether the patient had a living will or not). That’s good news because three out of five patients who have living wills in the first place never give them to their doctors or to family members.
While that fact is baffling to most, it leads directly into the necessity for medical doctors to exercise their professional opinions regarding care that is in the best interest of the patient. Family members must often draw from their knowledge of their loved one’s lifestyle and wishes, perhaps even going back to conversations that happened before a crisis ever arose. Sometimes, though, the decisions made can go directly against the wishes of the patient.
Having a living will does not always negate a medical team’s decision to perform invasive procedures on the terminally ill. And again, family members who are facing difficult decisions are often reluctant to accept a diagnosis of imminent death and will, in some cases, fail to follow the instructions in a living will (hoping for a turnaround).
A number of legal and health care professionals who once championed the idea of each patient having a living will are now suggesting that patients designate a health care advocate. Generally this would be a family member or perhaps a close friend who would exercise what the legal community calls “substituted judgment.” In short, the health care advocate is responsible for making the decision you would make if you were able to. To protect that individual, a patient may even record verbally or write out their wishes, to confirm that the decision made–no matter how difficult–was in accordance with the patient’s desire.
There’s really no way to guarantee that what actually happens during a serious medical situation is what you would have chosen for yourself. But you can increase the chance of receiving the care you desire by communicating with your loved ones, with your doctor, and in writing the outcome you would want.
