DENIAL- The refusal to admit the truth or reality of something…….

Caregiving sometimes takes us to uncomfortable situations, where doing the right thing is often murky and difficult to know. Here at Project Independence we have become familiar with the way in which short term denial can ease the process when we are being pushed to our emotional edge.

We hear denial when caregivers communicate that their loved one is showing rapid decline at home related to a diagnosis of Dementia but when asked to consider adult day for them, the response is that they are not ready for that yet.   We hear it when stories are shared of how family members and close friends offer support and then go into hibernation for months on end without any calls or visits.  And again we learn of denial when caregivers reach a point of near physical collapse before they begin to seek out a support network for themselves.

The thing about denial is that while outsiders can often see it so clearly, those of us in the midst of caregiving can, and often do, become blinded to it and unable to accept that we may be caught in a cycle of avoidance. Sigmund Freud’s daughter Anna Freud (1936) proposed that denial involves blocking external events from awareness. If some situation is too much to handle, the person just refuses to experience it.

For instance, initially after being faced with a life changing diagnosis, it’s quite normal that we may deny and minimize the impact this may be having on our life and relationships.  The psyche needs this time to come to grips with the reality and in fact a short period of denial can allow us the necessary time to adjust to the circumstances and prevent emotional overload.

I’m reminded of a time in my life, 16 years ago, when my husband Stan was dying of Lung Cancer. In the evenings after I had helped him into the hospital bed in our dining room I would sit down in the living room and call my best friend Patti to talk.  Mostly I complained, telling and re-telling the various things Stan was refusing to do during the day while I was at work.  He wasn’t doing the physical therapy exercises that were prescribed, he was taking too much of the prescribed Morphine and refusing to take a shower.

Then one night Patti got up the courage to interrupt me and in a gentle compassionate voice she said to me “Shell, he is dying and you are not helping him do that.”

Things changed after that conversation; I heard her. I suppose I was ready to hear her.  It took time and   after that night, I moved forward in helping Stan do what was next for him in his journey.   I helped him die at home.  I took family medical leave and dedicated myself full time to spending his last days hanging out with him, listening to his favorite music, massaging his feet and reminding him that that I loved him and was right there by his side.

 

What can you do to move past denial when it’s continued on beyond the initial adjustment period? How can you begin to more realistically face the realities of your particular situation?

First begin by reminding yourself that this is a journey and it will take time.   Next consider trying out some of the following:

• Carve out time to meet with a trusted friend and vent regarding your situation and what scares you the most about it. Caregiving experts explain that through telling our stories to someone we trust, we begin to come out of denial and face our situation more realistically.

• Consider keeping a caregiving journal where you can jot a short note to yourself on the particular challenges and frustrations you are facing. Examine it regularly and look for emerging themes and patterns.      

• Explore what the potential negative consequences could be of not taking action or of taking too much action.

• Participate in a support group consistently where the group may be able to offer realistic feedback and share concerns. Often through trusted relationships we can hear and accept the truth.

 

Denial prevents us from facing truths that while painful once faced can lead to transformation. When we begin to relax into our reality and accept it, we let go of the battle and become freed up.  This can be empowering and allow us to bring to the situation greater compassion, creativity and even a sense of humor that can make all the difference in the world.   Letting go of denial allows us to rise to the occasion and do our very best for the one’s we love.

Author Bio: Shelly Ehrman is the Outreach and Caregiver Support Specialist for Project Independence.   Shelly has been a nurse since 1985 and has extensive experience in geriatrics, mental health and homecare.  For questions on caregiving resources and ways PI can help make the difference in the lives of others please reach out to Shelly at info@pibarre.giffordhealtcare.org or call 802-476-3630

 

As an illness progresses, care needs will change. As the needs change, so will caregiver responsibilities and concerns.  I cannot stress enough the importance of a caregiver enlisting support and assistance from others.  We are not super humans who can do it all alone!  At the end of this column, there will be a listing of local agencies and websites that can assist you through this journey.

One thing about caring for a loved one, with an illness affecting the memory, is that no two individuals are alike. They all have similarities, however what may work for one person may not work for another.  As the disease progresses and your loved one becomes more confused and forgetful, there’s a strong likelihood that he/she will also become restless, anxious, irritable and struggle with paranoia.  Don’t just accept that this must be the new norm; there are some very helpful medicines out there to relieve these symptoms.  Discuss this with your primary care physician and/or neurologist and be patient as it may take a few tries to settle on the medicine that works best for your loved one.  Added to the above issues will be physical changes as well that you will need to adjust to.  Some changes may include, loss of depth perception (which means unsteadiness and poor balance), poor oral hygiene, incontinence, tremors, etc.

If/when it becomes too difficult to balance all these changes successfully; you may need to consider getting round the clock care assistance in your home or admitting your loved one to a nursing facility that can provide that. Remember, you are not super human and it’s okay to take the steps necessary to provide the best care for your loved one.  Once you reach this stage, you will still be the loving caregiver but in a new capacity.  You will now have time to spend with your loved one where you can just enjoy being together, without having to handle all the day to day physical care.

Signs that it may be time for nursing facility care…

• Your loved one’s illness has progressed to the point where he/she tries to hurt you or himself/herself or exhibits anger, agitation or paranoia that medication hasn’t helped
• Your loved one has care needs that you can’t handle well, despite your best efforts
• Your relationships are suffering
• Family members and/or friends have expressed concern for you and encouraged you to explore nursing home options
• Your doctor has suggested nursing facility placement
• Your own health is declining

One important thing; don’t wait until you’re at the point discussed above to make plans for this! Start planning now by researching care facilities in your area and/or how to obtain in home care, if that is your choice. Many of these facilities and service providers have a waiting list so planning ahead can be crucial to having care available when you need it.

Resources for Information and Assistance:

•  Central Vermont Council on Aging: www.cvcoa.org or 1-800-642-5119 (Senior Helpline)
• Medicare has a site to compare nursing homes: www.medicare.gov/nursinghomecompare
• Central Vermont Home Health & Hospice: www.CVHHH.org or 802-223-1878

 

Here’s a more in depth look at some of the services you may want / need to utilize as a cognitive Illness progresses.

• To begin with, focus on establishing any services needed for daily care. If you or your loved one is hospitalized, a social worker will be assigned to help you prepare for next steps whether it’s being released to go home or to another facility for further care. The social worker will assist with connecting you with the services you need for this transition. Central Vermont Home Health & Hospice may be utilized for assistance with daily care, physical therapy, etc. They will also help arrange for any needed supports at home (hospital bed, walker, etc.) and visit regularly.
• Once the initial crisis is over, one of the first and most important steps is to make sure all legal documents are in place for medical and financial decision making. This may include a Will, Advanced Directives for Healthcare, Power of Attorney for financial decisions, etc. Elder care lawyers, your local Council on Aging and Vermont Legal Aid can be very helpful in this area. If/when you are unable to speak for yourself, having these documents in place allows the person you chose to act on your behalf and carry out your wishes. These are crucial documents a caregiver will need.
• Assess your financial situation and seek advice from a financial planner, if needed. Depending on your financial situation, it may be wise to establish a trust to protect your assets or to spend funds to make improvements to your home to make it easier to care for your loved one.
• For the caregiver, arranging a support system is crucial. Family, friends and neighbors will offer to help you; don’t be shy or afraid to bother anyone. Make good use of these offers; have a list of areas/things they can help with. Write in on the calendar so you’ll know when to make appointments or arrange meetings. No one is Superman or Superwoman and we all need help sometimes!
• Another resource to consider is utilizing an Adult Day Center. Adult day can offer to support the person who is ill and also the caregiver. The earlier in the illness a person begins attending an adult day, the more beneficial it is for the person attending and also for the caregiver. Adult days offer an opportunity for social engagement, physical therapy supports, medical oversight and assistance with daily care while there. For the caregiver, adult day offers a break to care for your needs, run errands, socialize with friends, read a book, take a nap, etc.
• Next month we’ll talk about when a loved one needs a greater level of care than can be handled at home.

Being the main caregiver for a loved one, regardless of what illness he/she may have, is one of the most stressful and physically & emotionally tasking jobs anyone can have! Combine that with all the stress, work, excitement and heightened emotions of a busy holiday season and you could have  challenging circumstances.  Below are some tips to help you and your loved enjoy a less stressful holiday season this year!

 

 

Holiday Tips for Caregivers

1. Be realistic – the holidays don’t have to be perfect! Adjust your expectations and trust your instincts on where to spend your energy and what traditions are really important to both of you. Remember that you can recognize, more than anyone, how much you and your loved one can handle.
2. Plan ahead – schedule time for shopping, cooking, cleaning and other activities. Enlist help from other family members, friends and neighbors. You are not in this alone!
3. Learn to say no – family, friends and coworkers will understand if you can’t participate in every event or social gathering. Pick and choose what you say yes to.
4. Entertaining – If you’re usually the one hosting a large meal, consider having someone else host or share the work. If you do choose to host, prepare the main course and have everyone bring a side dish and/or dessert. Let your guests help with cleaning up after.
5. Take a breather – make time for yourself, eat healthy and get enough rest. Take a little time to do something enjoyable whether it’s a movie, a massage, reading a book or taking a nap.
6. Support – be aware that the holidays may evoke memories of better times, not just for your loved one but also for you.   Talking with a close friend, a counselor or a caregiver support group can help with all the emotions that may bubble up.
7. In addition to the tips above, to support the caregiver, here are a few things to consider when a loved one has a cognitive illness:

• If your loved one is uncomfortable in larger gatherings, consider attending on your own. Invite or hire someone to keep your loved one company while you’re gone and provide special activities and/or treats to share. Remember, you’re only a phone call away.
• When attending a gathering together, let your host/hostess know ahead about what is going on; whether it’s physical or cognitive limitations.
• Plan ahead; try to anticipate potential needs for a successful outing. Don’t rush getting ready to go as that can increase anxiety.
• In closing, take a deep breath, relax and enjoy this special time of year. Have a safe and happy holiday season!

A sudden personality change observed in a loved one can be caused by a variety of things; depression, pain, medications, and urinary tract infections (UTI) are a few of the most common causes. If your loved one has dementia, personality changes can also be one of the effects of the progression of the illness.  In all instances, a sudden personality change can signal that something is happening and you should seek help from your loved one’s primary care physician as soon as possible.

The most common illness we encounter at Project Independence is a urinary tract infection (UTI). It can be difficult to recognize a UTI in someone with a dementia related illness due to the fact that they may be unable to communicate what is happening or how they’re feeling.  One hint that something is going on is a change in normal behavior such as increased agitation, unsteadiness, anger, change in gait, paranoia or aggression.  Other symptoms are: cloudy urine, a foul odor, fever, increased falls, more confusion and disorientation.

Risk of a UTI is higher in anyone with dementia, especially women

• Hygiene issues: People with dementia often use improper wiping techniques when using the bathroom, wiping back to front or not wiping at all. This increases the spread of bacteria.
• Incontinence: As dementia progresses, the ability to control bladder and bowel urges declines. Wearing adult incontinence pads/briefs can also add to the problem unless changed frequently.
• Reduced mobility: Decreased mobility due to advancing illness also increases the chance of UTI.
• Other conditions common in older adults can increase the possibility of an UTI: diabetes, prostate problems in men, weaker immune systems, etc.
• UTI’s are easily treatable; however the chance of a recurrence is high.

Tips to Reduce the Chances of UTI

• Encourage adequate fluids
• Assist the person with dementia in cleaning themselves after urinating or a bowel movement.
• Encourage clothing that can breathe
• Encourage the person to urinate more often
• Change incontinence briefs/pads more often

We hope this information is useful to you as you navigate the always changing environment of being a caregiver.  If you’re looking for help/information on a particular topic, please email info@pibarre.giffordhealthcare.org and we’ll research it for a future edition.