Sharon L Ward, MS, LPC, NCC
|Posted on October 18, 2018 at 4:35 PM|
I have been a caregiver [both in state and out of state] for a family member since 2011. I wrote this piece for a panel presentation and have decided to share it with you here. This is a list of things that I wish I had known when I started this journey. I hope you find it helpful. If you use it for other than personal use, I do ask that you cite me as the source. I wish you peace and patience on this journey.
What I Wish I Had Known…
(about caring for someone with dementia/Alzheimers)
1. Terminology can be confusing. Over time, the meanings and names of symptoms and disorders may change and this recently happened with the publication of a new Diagnostic and Statistical Manual of Mental Disorders [DSM] - 5. Understanding the terminology can help you make sure you are getting appropriate care. The new DSM eliminated the term dementia and it has been replaced with Major or Minor Neurocognitive Disorder. If you are given a diagnosis, ask to see what that diagnosis actually means and get a copy of it.
2. Dementia is more than forgetting things and it isn’t as simple to diagnose as filling out a checklist of symptoms or not passing a Mini Mental Status Exam [a short quiz a doctor may give to test certain aspects of mental functioning]. In fact, memory loss is not always necessary to consider a diagnosis of dementia. It is a complex cluster of behaviours that come and go and are confusing, frustrating and scary at times.
3. Having a loved one with mental decline may intensify long standing relationship or behavioural issues. If the relationship has been difficult, that may get more pronounced. For some however, there can be a shift in personality. Those who have been difficult may become more gentle. Some may become more clingy or unsure of themselves. Those who have been reserved may become more aggressive or outspoken. At this point, there may not be the option to repair those long standing issues.
4. Seeing symptoms and behaviours as part of the disease, not the person themselves can help depersonalize this process. Sometimes it becomes easier to think of the loved one as a person you care about, but not the loved one you knew. The goal becomes to help them be more comfortable, not to repair or maintain the relationship you once had.
5. If you think you need to go talk to someone like a therapist or clergy member, do it. There are no prizes handed out at the end for being the one who did it all alone.
6. Arguing or getting angry with folks who have dementia or Alzheimer’s doesn’t work. You can’t convince them of things that seem completely obvious to you. Trying to do so creates more tension, frustration and anxiety in everybody. At some level, they know something is wrong and when they sense people are angry at them, it makes them more defiant and anxious. Instead, allow them to share their fears or frustrations, reassure them that problems are being handled without a lot of details. In some ways, it is like dealing with a tired toddler – reason may not be the best approach in those situations. At the same time, a tone of respect and concern can help ease their angst.
7. Driving issues are tough to manage. While the person may still have awareness of laws and locations of frequently visited locations, their reaction time and physical strength may be impaired.
8. Medications work differently in older people. Their doctor needs to be aware of these differences and so do you. Narcotics and pain killers and anti-psychotic medications can create some dramatic changes in behavior – both good and bad.
9. Pain may be expressed through behaviour. Sometimes, the awareness of physical pain is not easily expressed – it may come through in behaviour changes such as irritability.
10. Be aware of “sundowner’s” – near sundown, behaviour can change or escalate in some patients.
11. A urinary tract infection [UTI] can create dramatic changes in behaviour within a few hours.
12. Collaborating with siblings or children who are not in the area or not involved in the loved one’s care can be a challenge. The people who are not there day in and day out do not see the whole story and may second guess your observations or recommendations. This is not necessarily a personal attack. No one wants to believe that their loved one has dementia or Alzheimer’s. Making this more difficult is the fact that patients can “rally” for short periods of time. A visit from an out of town friend or family member can seem to revitalize the patient for a day or two, but you may see that after the visit, your loved one is more exhausted and disoriented for a few days. If you are the primary care giver, don’t assume your siblings or children will automatically know what would be helpful. Tell them what is helpful or ask them to do specific things.
13. Your loved one is not doing this on purpose. Because the disease selectively and inconsistently interrupts the loved one’s ability to process information, it can seem like your loved one is deliberately creating difficulties. They remember one thing from yesterday just fine but not another.
14. You will need to advocate for your loved one with doctors, nurses, staff, insurance companies and others because they cannot do it for themselves and you are more invested in your loved one’s care than the treatment team will be.
15. What the patient liked to do 10 years ago may hold no interest for them now. At the same time, something familiar like a piece of music or pet can be very comforting or engaging.
16. A physical illness or accident can create a dramatic decline in functioning in a very short period of time.
17. There is a BIG difference between these entities:
a. Nursing Home: staffed with nurses and aides. There may or may not be a physician on staff. Usually considered the highest level of care and often the most expensive which makes one think that the care would be the best. However, physicians may spend 15 minutes per month with the patient and may not talk with staff or family either before or after their visit. Nursing home staff are not specifically trained on dealing with memory issues and may treat the patient as a fully functioning adult – expecting them to remember things that they cannot remember and getting frustrated with or ignoring the patient when they can’t remember. These facilities may medicate the patient with narcotics to make them easier to deal with. Goal is medical stabilization and physical rehab, not addressing psychological well-being. The nursing home environment is often noisy and can create additional distress and confusion to the patient. If your loved one needs to go to a nursing home/rehab facility due to injury, surgery or medical issues, you may need to spend more time advocating for them. These facilities are not “locked” which means your loved one may be able to wander outside the facility without anyone realizing it. Review health inspection records on a regular basis and certainly before having your loved one admitted.
b. Memory Care: these facilities are designed specifically for people with memory issues. They are usually decorated more like a home and may have “homey” type features such as desks, books, dolls and pictures on the wall. Many of the newer facilities are built in a circular fashion as people with dementia/Alzheimer’s like to walk/wander and the circular design keeps them from coming to the end of a hallway and either attempting to exit the building [setting off alarms] or becoming confused and frightened, not recognizing they can turn around. Some have secure courtyards that are secured allowing patients to come in and out of the building in a safe way. There are activities in some facilities which add to quality of life such as pet therapy, art and music which may create some true bright spots in their lives. There is typically a nurse on staff who monitors medications, but typically medical care will be handled outside the facility. Some doctors will make “house calls.” Any medical emergency will probably be handled by EMT/Ambulance personnel. Some facilities will hold a bed for your loved one while they are in the hospital – you will need to know what the facility’s policy or fee is. Some memory care facilities will also work with hospice or palliative care agencies to provide additional care that the memory care facility cannot provide.
c. Assisted living: This is care for more independent individuals. An elderly person might get an apartment in an assisted living facility and still do all their own cooking and driving and manage their own medications and doctor’s visits. Others have a cafeteria/dining hall.
d. Some facilities provide all 3 levels of care so that the patient can start at the minimum of care but move up into more advanced care as needed – or back to more independent living within the same property if their condition improves. If you are getting a lot of complaints from staff or your loved one, it may be time to consider a different level of care.
e. Board and Care homes: Situated in private homes that have been updated and modified for geriatric or handicapped care, these can be a wonderful option for your loved one. Look at inspection records, make a site visit [unannounced as well as announced], ask about care during night time hours [not all provide support overnight] and what doctors in the area might be available to make house calls. These homes do not typically have medical staff but can usually give medications as prescribed and should have a logging system to account for all medications received and dispensed. Some also will coordinate with dentists and hairdressers and podiatrists to tend to those needs for their patients. Slack is an app that some use that allows the staff to record notes/photos on a shift by shift basis and that means if a problem is developing, you can address/ask questions more quickly.
18. Ask for [and demand if necessary] regular care coordination meetings with staff/physicians/nurses etc. Things you may ask include: how much/little and when is the patient sleeping/eating/using the bathroom, what behaviours are they seeing and what is done to manage those behaviours, what medications are given and why, do they have adequate clothing and personal care items etc. You may also need to coordinate dental and personal hygiene [nails, hair, feet] care independently from what the facility offers. Make friends with the staff. Be there frequently. Staff in these facilities turns over quickly. It is a hard job to work in this setting and the pay is not usually that great. The more people you know, the less difficulty there is when a particular staff member leaves.
19. Consider a wheelchair and/or bed alarm if your loved one is a fall risk. These are sensors that are placed either on the seat of the wheelchair, under the mattress pad or on the wall that will signal personnel if your loved one is trying to get out of bed or their wheelchair on their own.
20. Eating: As the disease progresses, you may find your loved one is losing weight or seeming to not have much appetite. Sometimes this is due to forgetting that they are eating while in the middle of a meal. Ask if staff can prompt or cue your loved one to keep eating. Work with staff to provide snacks during the day.
21. Clothes, shoes, glasses and other items tend to wander away. Putting names in clothes etc. can help but is not a sure way to stop things from getting lost. Sometime other residents pick up something as they walk by. Valuables should not be kept at the facility even if they have their own room with a locked door.
22. Billing: Some services [especially ambulances and hospitals] are understaffed and will not send billing to the person who manages the impaired individual’s affairs. If a bill is sent to the care facility, you may never see it and months later discover that a collection agency is hounding you or your loved one for money that you never received. Try to make sure a packet of all information [medications, power of attorney, Advanced Directive, contact information and phone numbers, medical conditions etc.] goes to and from the hospital with your loved one. There is no guarantee that hospital staff will look at the information but if you can’t be there with the patient, it is at least a start. Make sure that all services have been actually billed to Medicare/supplemental insurance before you pay.
23. Look into hospice and palliative care programs as a means to avoid sending your loved one to the ER. ER’s are often not prepared to deal with a dementia or Alzheimer’s patient and may restrain them if there are other, more urgent cases in the ER unit when your loved one arrives, particularly if there is not a family member or advocate with them when they arrive.
24. Some families install a Dropcam or similar device in the room of their loved one so that they can check on them throughout the day without having to travel to the facility multiple times a day.
25. Be mindful of the effect that caregiving has on your own family. While you are tending to your loved one, your children may be concerned or confused about what is going on – or sad/angry that you are not as available. Talk with them about how this impacts them. Your spouse may not be able to completely understand what is taking your time – particularly if the loved one is in a facility and your spouse has the expectation that the facility is handling everything. When you talk about the situation, let people know if you are [or are not] wanting suggestions or help. Sometimes you just need to vent.
26. Be mindful of the effect this has on you. Take care of yourself. You can’t care for someone else if you don’t take care of yourself. Let your friends help when they ask whether that is a listening ear, a home cooked meal or taking the kids so you and your spouse can have time alone. If you have a friend who also is taking care of someone with similar issues, consider swapping out care. It can be easier to take care of someone that you aren’t as emotionally involved with. Take 1-2 minutes here and there throughout the day to practice deep breathing. 5 minutes of stretching during the day can help. Go for a walk, swim or run. Sit out on the porch and watch the sunset. Pray. Have a good long cry. Grieve what was and what is now and what is to come. Plant some seeds, go to a movie, listen to music. Laugh when you can because some of this gets pretty ridiculous.
27. Finally – there is no perfect solution. No matter what facility you pick or what tone of voice you use or what kind of food is available, there will always be room for second guessing yourself. Do the best you can. No one can ask any more.
For more information, please contact
Sharon L. Ward MS, LPC, NCC
104 Maverick Street 4200 S. Hulen, Suite 450
Aledo, Texas 76008 Fort Worth, Texas 76109