Even when the problem is imagined, the hurt is real.

When caring for a loved one with dementia, there are several irrational behaviors that require a specialized response. Your response may require identifying imagined triggers and calming down your loved one. However, there are other instances when, though the negative behavior is rooted in their mental condition, the hurt is real. 

Some examples: 

• A loved one becomes frustrated about losing the ability to perform an activity that they recall being able to do without help. 
• A loved one somehow believes something about someone that isn’t true and cannot be convinced otherwise. 

Though rooted in a dementia-related cause, the corresponding negative emotions are quite real — unable to be explained away or soothed. So, what next? 

The pain is real — so treat it as such.

It can be easy for the caretaker of someone with dementia to forget that sometimes people experience hurt not because they have dementia, but because they’re human. Whether they feel they’ve been belittled or they’re just upset because they can no longer operate a coffee maker, the hurt is genuine. The best response in these situations is the same support you’d provide for any frustrated friend or loved one. 

Be there to listen. 

Just like any friend who needs to vent about a problem they’re having at work or in a relationship, your loved one with dementia is no different. Genuinely listen to what is troubling them. More often than not, the sensation of being heard will help them feel better. 

Support them. 

Many negative emotions simply need a listening ear. Others require a shoulder. When you can offer comforting support, do so not from the perspective of a caregiver but as a loved one or friend. When you feel it is appropriate, share a similar experience you’ve had and how you dealt with it. Offer to help in any way you can. 

When in doubt, put yourself in their shoes. 

Helping someone with dementia navigate negative emotions can be incredibly tricky. You’ll feel the need to consult every blog or book under the sun on the issue. Where should you start? Well, a good place to look is in their shoes. Look through their eyes and their thought process. The hurt you would be feeling is real and being told that it is imagined isn’t what you’d want to hear. Sometimes, a little role reversal can make all the difference in providing the most customized and loving care possible. 

Not everything is dementia’s fault. 

It can be easy to forget that, though a loved one is experienced advanced dementia, that their condition may not be the sole reason for their frustration or hurt. For this reason, it’s essential to treat the loved one as a person with genuine hurt and not just a person with a mental condition. 

Palliative care and hospice services in the Greater Tulsa area.

When the time comes for requiring nurturing hospice and palliative care for your loved one, know that you and your family can trust the professional from Cura HPC. We treat every patient as we’d treat our own family — with compassion and the utmost care. 

Learn more about Cura HPC today.

The need for help doesn't mean you’ve given up. 

There is a belief among some that nursing homes exist to care for those without family or whose family does not want to do the necessary work in carrying for them. Before we proceed in this piece, we must strongly dispel this myth that does immense harm to both patients and their loved ones alike. 

No two dementia patients are alike.

Despite the type of dementia or the stage, no conditional level determines the style of care required. Optimal care should be determined on a case-by-case basis and involves a wide variety of factors. This can mean that one extremely advanced Alzheimer’s patient may never need nursing home care while someone else at a less advanced stage may require around-the-clock professional care just depending on the following factors. 

Do you worry about their safety?

If your loved one is a threat to their own safety, nursing home care may be warranted. 

Do they wander off? 

If your loved one is a wanderer, there's a strong chance that belong in a facility that will limit this behavior before it becomes dangerous for them. You probably cannot provide the amount of surveillance and restraint necessary to care for a loved one who is prone to wandering off — especially if you live in a place with extreme climates at different times during the year. 

Can they detect and appropriately respond to danger? 

As a loved one’s dementia progresses, they may begin to lose the instinctual ability to detect, respond to, or avoid danger. When faced with an emergency, they may lack the wherewithal to alert the authorities, to ask for help, or to preserve their own safety, or to guard sensitive information from strangers. 

Do you worry about their bodily functions? 

While it is normal to have to clean up a mess here and there for most patients, once a patient has lost most control of their bodily functions, they likely require more help than one loved one can provide. 

A loss of bowel control can quickly progress from frustrating to exhausting to dangerous. For patients who have frequent accidents or have lost control of their bodily functions altogether, the level of necessary care can exceed the abilities of a well-intended loved one. These patients may become uncooperative during necessary changes or even resist the necessary process of cleaning them. Such living conditions may exceed the abilities of an at-home caregiver and require additional help. 

Do you worry about your own wellbeing? 

While there certain people out there who would just as soon turn family members over to professionals at the slightest inconvenience, there are others who would sooner thoroughly exhaust themselves, risking their own health, to avoid using nursing homes. Neither of these situations is ideal. 

The right decision includes your well-being, too. 

It is normal for someone to feel guilty about checking a loved one into a nursing home. However, when the duties of caring for a loved one threaten your own health (physical, mental, etc.), family life, or even steady income, a nursing home should always be a guilt-free option. 

Once you’ve allowed yourself to be honest with your thoughts, you may come to realize that the ideal care for your loved one includes preserving your own mental and physical well-being as well. 

Don’t think of it as outsourcing care, but rather supplementing care with help from professionals. This professional help will allow you to be the most beneficial version of yourself for your loved one.

Compassionate Hospice & Palliative Care in Tulsa, OK

For families in need of professional and compassionate hospice and palliative care in the Greater Tulsa, Oklahoma area, Cura HPC Hospice & Palliative Care can help.

Learn more about and connect with Cura HPC today. 

“How do I know if I’m doing a good job?” 

As the caregiver of someone with dementia, it can be tough to know if you’re doing an excellent job or if you’re out of your depth. It is critical to use the correct “performance indicators” when trying to gauge the quality of the care you’re providing.

Firstly — Yes, You Are

Indeed, we’ve never met. We have not sat in on a day with you and your loved one. However, simply because you care enough to research how to be a better caregiver automatically means your heart is in the right place. So, before we jump into assessing performance, know that you’re off to a great start. 

Why Patient Happiness is Not a Great Performance Indicator

It’s easy to feel like a lousy dementia patient caregiver following an uncomfortable situation. However, simply asking, “are they happy right now?” is a very poor indicator of the quality of care you’re providing. Why? Well, let’s look at the unique circumstances impacting a dementia patient: 

• As their condition declines, they’re likely losing abilities.
• As they lose abilities, this usually means losing “privileges” — such as operating a car, leaving the house alone, cooking, or handling their finances.
• All of these lost abilities and privileges are bound to make them confused and upset.

While you could give in and give them immediate happiness by granting their request to take their car for a spin or take control of their credit card information, this is not an indication of quality care. The same could be said about a parent who simply gives into their children’s demands when the results are unfavorable or even dangerous. 

Patient happiness is also not a good gauge of the quality of your care because it leaves out a crucial element — your wellbeing. It is not uncommon for a caregiver to put the happiness of their loved one above their own health and happiness. Not only can this complete selflessness result in a lower quality of care in the long run as you’re completely worn out, but it may even result in you sacrificing your own health. You must tend to your own emotional and physical needs to continue delivering quality care. 

But what are good performance indicators for dementia caregivers?

You probably wish there was a simple checklist to fulfill to determine if you’re doing a good job. So, what is a good performance indicator for dementia caregivers? Simply put, how well you manage the difficult decisions. 

There will be a lot of no-win situations. 

You want to make your loved one with dementia as happy and comfortable as possible. However, you’ll be frequently required to say “no,” — which may upset the patient. Most of these occasions will not only be for their own good but also your own long-term preservation as a caregiver. These scenarios may have no outcome that keeps the patient simultaneously happy and safe. 

Understand that saying “no” is not a failure on your part, and a safe yet upset loved one does not make you a bad caregiver. It makes you a compassionate person who — yes — is doing a great job. 

Compassionate Hospice & Palliative Care in Tulsa, OK

For families in need of professional and compassionate hospice and palliative care in the Greater Tulsa, Oklahoma area, Cura HPC Hospice & Palliative Care can help.

Learn more about and connect with Cura HPC today.

Most people these days would prefer not to talk about death. The subject matter itself makes them uncomfortable, let alone the emotions about such finality or unease it conjures. Still, for most, this conversation is immensely beneficial — not only for the dying individual but also those they leave behind. With this, there are several ways to minimize the awkwardness and uneasiness associated with such subject matter and infuse the interaction with support. 

1. Sit on the same level as the person.

Our stature during a conversation can communicate almost as much as the content of our speech. When speaking to a dying person, especially when delivering difficult information, try to bring your face level with their face as much as possible. This signifies that you are there with them in a supportive capacity. 

2. Put aside any objects between you and the person. 

Whether we realize it or not, we often use objects in a room to shield ourselves from discomfort. A phone may feel like an escape hatch from a socially awkward encounter. A book may be a quick change of subject or focus when the topic becomes displeasing. When speaking to someone about death — their impending death or your own — strive to remove any barriers. Even sitting across the table from a person can make them feel that much more distant from you or that your differing fates are emotionally separated by the piece of furniture. And, of course, silence all phones and put them entirely out of sight. 

3. Speak to the person straight forward in an open body posture. 

Those speaking about dying want to feel heard as much as possible. Crossing your arms or legs or sitting sideways (such as in a car) does not tell them you are ready to listen to what they have to say carefully. When you speak about death or dying, make sure to be presenting an open body posture that says, “I’m listening.” 

• Align your shoulders with their shoulders — striving to keep your collar bones parallel with theirs’. 
• Keep your legs uncrossed. 
• Keep your hands and arms resting comfortably on your knees or thighs — not crossed over your body. 
• Keep your hands fully visible — out of pockets, behind your back, or away from the sides of the seat of your chair.
• Do not recline or lean sideways against an object in a casual manner. Instead, lean slightly forward in their direction.
• Keep your feet aligned with theirs.
• Gesture with open palms to signify your support.

4. Signify that you’re listening with responsive behavior. 

Even after removing all previously-mentioned obstacles to the conversation, it’s still possible for the person to not feel they have your full attention if you’re not responding appropriately.

• Keep natural eye contact with the person while speaking and listening.
• Gesture that you’re listening with appropriate nods or responsive — not reactive — facial expressions. Remain mindful of what your face is saying and how it may differ from your words or notions. 
• Consider if bodily contact may be appropriate — such as holding their hand while speaking or occasionally touching their shoulder or knee for comfort or to express your dedication to their support. The decision to employ bodily contact will depend on the individual and your relationship. 
• Delivering a warm smile when discussing one’s support network can go a long way towards helping someone feel loved and taken care of, but remember to keep the appropriateness of certain facial expressions in mind. 

5. Conclude with as much warmth as possible (and is appropriate). 

Speaking to someone about death or dying can feel immensely disorienting. Such conversations can almost feel like the oxygen has been sucked out of the room. Do your best to provide loving assurance and your dedication to supporting them. Make sure to summarize the next steps in their care and give them a means of contacting you. Concluding with a hug or other bodily contact—a handhold, a gentle shoulder squeeze, a kiss on the cheek, etc.—any actions to soothe anxiety may be helpful.

Supportive Palliative & Hospice Care in the Greater Tulsa Area

Help is here. Cura HPC Hospice & Palliative is honored to served patients and families in the Greater Tulsa, OK area.

Whenever a loved one is experiencing immense grief following the death of someone close to them, our instinct is to fix the hurt. If it were up to us, we’d love to be able to present a magic pill that makes them feel all better—after all, all pain is the same, right? Wrong. 

Unfortunately, grief, unlike bodily pain, is best processed rather than masked or avoided. Assisting people in processing their grief is a task few that of us have adequate training or experience. There are, however, many aims one can bring to a relationship to assist our loved ones in their grief processing. 

1. Aim to support, not fix. 

If a loved one suddenly broke a limb, our first instinct would not be to attempt to set the bone. We know that we’re not qualified to that, and if we tried, we would likely cause more harm and pain than good. What we do instead is aim to stabilize the wound to assist them in their healing process. Instead of trying to maneuver a bone back into place, we’re better off acting as the pillow beneath the wound. 

Such is the same attitude to have toward supporting someone experiencing immense grief. While you’re likely not the doctor who delivers the curative treatment, you can definitely be the sling beneath the cast that keeps the broken arm stable so the healing can take place. 

2. Aim to relieve the pressures you can. 

Telling a grieving person that everything will be ok or that you can fix the problem is not helpful or truthful. Giving this kind of false assurance may even prolong their grief in the way a phony remedy may prolong an ailment. So, what can you do? You can offer your services in relieving what is within your grasp. 

Many people experiencing immense grief may be slow to rebound simply due to the responsibilities of daily life. Even though it may feel like the world stops when a loved one dies, it does not — and simply keeping the plates of daily life spinning can make processing grief a drawn-out process. 

Instead of assuring them of relief or withdrawing completely, there is a beneficial middle road — providing practical assistance. 

• Offer to run errands for them. 
• Bring over freezer-ready meals for days they don’t feel like cooking. 
• Coordinate rides for their children to their various activities with people they know.
• Present the support you know they need but may feel awkward about asking for. 

This leads us to the best you can be of service to a grieving loved one...

3. Aim to be an active listener — not a source of answers. 

One of the most supportive activities you can perform for a grieving friend may not seem like an activity at all — listening. The loss of a loved one can leave one feeling incredibly isolated. Simply having a friend to listen or even just share the same space can be an immensely comforting presence — a respite from yelling into the void of one’s own emotions. Shouldering their emotional burden can help them feel that some of the weight of the world is relieved, giving them the space to feel vulnerable and, ultimately, to heal. 

• When you encounter your grieving friend, don’t feel the need to distract them from their woes. 
• Let them sit behind the wheel of the conversation — you’re simply a passenger. 
• Don’t feel the need to fill any silence with words of consolation. 
• Silence or simply you sharing the space may be precisely what they need. 

Sharing the silence with them may be one of the greatest gifts you can offer. 

Supportive Palliative & Hospice Care in the Greater Tulsa Area

Help is here. Cura HPC Hospice & Palliative is honored to served patients and families in the Greater Tulsa, OK area.