If I am in the earliest phase of dementia, I generally will hide my deficits pretty well, even though I may be experiencing fear and anxiety as I realize that my brain is not functioning as well as it used to. Because people with dementia lose skills in the reverse order that children gain them, this phase represents the loss of my Adult Learning. This means that those skills that I got really good at when I became a full-fledged adult will be the first abilities that I lose. I may have challenges with word-finding, vocabulary and math. I may have issues with driving (car accidents, tickets) and my checkbook may become increasingly confusing and difficult for me to manage. I might mix up medications, so please keep an eye on that. I can’t seem to plan an event any more, make a shopping list, or even cook a whole meal. Multitasking is way too overwhelming for me. My speech may become vague as I struggle to remember the details of whatever you are asking me about.
It is important (not just now but throughout the dementia experience) that you as my care partner remember and focus on the strengths that I still have. There are many! In this early phase, I still have a sense of humor. Please help me find opportunities to laugh. Ask me questions you know I can still answer. (Do not quiz me to remind me of what I am forgetting.) I still have the capacity for ideas and decisions, so be sure to give me some choices. Relationships are still important to me. Please reassure me that you care. Hold my hand and speak to me with warmth and kindness. I still have interests. Help me explore them. I will have fun reminiscing with you about days gone by because my long-term memory is still really good. I can probably still use clocks, watches and calendars to some degree. Give me reminder notes if those still work for me.
In this phase, I will most of all need compassion and understanding. I am still a person, a person whose spirit is experiencing considerable anguish at the moment. Please avoid arguing with me, and do whatever you can to make things easier for me. But please try not to scold or embarrass me in the process. If you see that I am frustrated, it’s okay to say, “It’s so frustrating, isn’t it!” Please don’t take it personally if I get mad at you or seem to blame you at times. I do this because I am scared. I have a sense that I am losing control. If you can let my frustrations roll off your back and just acknowledge that I seem upset, if you can apologize to me even though you don’t know what you did to provoke my anger, I bet I will relax, and this might even encourage me to share my deeper feelings with you. I so need your love, support and your patience at this time. Thank you for asking me what I need!
--- Marysue Moses, Ebenezer Dementia Care Program Coordinator
This blog was inspired by information and insight in the book A Deeper Perspective on Alzheimer’s and Other Dementias, by Megan Carnarius.
When persons with dementia move into a memory care community, it can take from several weeks up to three months or more for the person to adjust and feel comfortable with the new environment and routine. From my personal experience working with memory care residents at one assisted living for over a decade, I would say the average amount of time before the person settled in was no longer than a month. Your loved one may be angry for a while, and may seem more confused than before. This is a perfectly normal phase. Rest assured, things will improve in time. Here are ten tips to help ease the transition:
There are many different ways that families communicate with their loved one about a move to memory care. The most successful plan will be designed to meet your loved one’s needs. Some family members don’t tell the person they are going to move, knowing this could create undue anxiety. Other families are completely honest with their loved one about the need for “more care” and they have their loved one participate in the move. However you decide to handle the communication, make sure all family members are on the same page, and keep in mind the following guidelines:
DON’T keep reminding your loved one they are moving if it makes them anxious. You might try telling them once, in a matter of fact manner, to see how they take it. If it stresses them out to talk about a move, don’t keep bringing it up.
DO reassure the person that they will be getting more help. Because of their dementia, they may bring up the same concerns or fears over and over. Let the person voice their concerns, and be understanding in your replies, i.e. “I can see why you’re worried about that. We’ll figure it out.”
DON’T pull your loved one into the details of the planning and packing process. Don’t ask them to decide what to bring and what to leave behind. With memory loss, decision making and any process with multiple steps will present challenges. If you don’t already know which objects or knick-knacks are most important to your loved one, spend time observing what things around their home they use and enjoy on a regular basis.
DO work with a move manager. A great example comes from a family who had one daughter take mom out for a morning of shopping followed by lunch, while the other daughter was assisting the move manager. The move manager set up the new apartment to look almost identical to the room in the old house where mom spent most of her time. When they brought mom into her new apartment, she knew something was different, but she felt very much at home right away.
DON’T over-pack. Memory care apartments are small for a reason – large spaces with lots of “stuff” can be overwhelming and anxiety-inducing for people with memory loss. A smaller space with a manageable amount of items in it eases the mind. Again, pay attention to what your loved one actually uses throughout the day and bring just what he or she needs. If your loved one misses something, you can always bring it later.
DO consider leaving the TV at home. As memory loss progresses, TV shows can be hard for people to follow. They can also be upsetting, as they can be confused with reality. Bring music, family photo albums and art or photography books instead – they are more therapeutic. Consider leaving valuables behind too. A person with dementia often picks something up, puts it down, and then forgets where it is. Save yourself the heartache of a missing wallet or priceless family heirloom by not bringing it to the new memory care apartment.
DON’T get started too late in the day. Try to get the move done so that your loved one is settled in their apartment by 2 or 3 p.m. at the latest. As the day progresses we all get tired, but a person with dementia will not cope as well as the rest of us. Enlist more moving help if you need the extra hands to be finished by 2 p.m. – it will make the transition smoother.
DO remember that people usually adjust quite well to their new environment, but that this could take around 2-4 weeks. Be reassured in knowing the staff in the memory care community are there to help your loved one settle into a comfortable routine. Because the new environment (not only the apartment but also the programming and the structure of the day) is designed to fit the needs of a person with dementia, you will start to notice your family member more at ease than they were before the move. When your focus returns to your relationship with your loved one, rather than the details of day to day caregiving, you will also be more content, knowing you have made the right decision.
It will probably come as no shock to caregivers out there, that persons with dementia can at times be very stubborn, critical or emotional. They might start yelling or become physically aggressive. Upsets can escalate quickly and become extreme. The person might refuse to let you, the caregiver, assist them with personal care. It may seem to you that your loved one is responding “inappropriately,” and that this reaction is out of balance to the situation. Why must they get so upset over what seems to you to be something quite insignificant? Why won’t Mom let you comb her hair, for example, when she’s always been so particular about how she looked?
The first thing to realize, and it can be tough for family members to reframe things in this way, is that the person with dementia is not acting “inappropriately.” They are simply responding the only way they know how, given that their brain is damaged. Mom won’t let you comb her hair because she is trying desperately to communicate a need. Maybe her head hurts. Maybe the feel of the comb going through her hair is tingly and unpleasant. Maybe she simply wants to do it herself and not feel like she is being treated like a child. These feelings and/or sensations will be more important to Mom than that fact that Mom used to pay more attention to her appearance, which Mom is not at all concerned with right now.
Mom’s brain is no longer wired to think the way she used to think. But Mom is still a person, with very real needs. It is our job as caregivers to do our best to identify what the need is, and to respond in such a way that the person feels soothed and validated, rather than aggravated.
Some common causes of these so-called “catastrophic reactions” are as follows:
Tips for responding effectively to these situations:
--Marysue Moses, Ebenezer Dementia Care Program Coordinator
"Mom, I don’t feel safe in the car with you.”
“Dad, I think your eyesight is getting worse.”
“I don’t think you should drive anymore.”
If you’ve said, or had these thoughts while driving with an older adult close to you, it may be time for a conversation.
How do you know when driving is becoming more difficult for seniors? Look for these signs:
There are steps you can take now to help make the transition easier:
One of the most common types of dementia, Lewy Body Dementia causes problems with thinking, movement, behavior and mood. There are two types of Lewy Body dementia:
1. Dementia with Lewy Bodies. This is when people FIRST have a decline in cognition,
then, within a year, develop movement problems.
2. Parkinson’s Disease Dementia. This is when people FIRST show symptoms of a
movement disorder, then, after a year or more, cognitive symptoms arise.
After the first year, the symptoms of the two types look very similar.
How should you respond to a person’s hallucinations or delusions? Tune in to the person’s emotions. Determine whether the hallucinations are upsetting for the person, or not. If the hallucination or delusion causes no danger or upset for the person, there is no need to do anything except validate the person’s perception or belief, i.e. “Huh. That’s interesting.” If the hallucination is upsetting, respond to the emotion expressed: “I can see why you’re upset.” Agree, sympathize, and validate BEFORE offering reassurance, i.e., “Of course you’re annoyed by all those little people running around. But I’ve got the situation under control.” You can offer the person empathy and concern: “I’d feel that way too, if that was going on in my room. Let’s go for a walk, they’ll go home soon.” Then, clearly and firmly, give the “little people” some direction, i.e., “Okay, kids, you’ve got ten minutes to get out of here.”
A variety of professionals can help manage the person’s disease. Medication may be helpful in some situations. Therapists (physical, speech, and occupational) can help with movement issues, swallowing and vocal problems, and can help to identify ways daily activities can be made easier for the person. Palliative Care Specialists can help manage constipation, sleep disorders and behavior problems.
If you are the primary caregiver for someone with Lewy Body dementia, make sure you have a team of professionals in place, and make sure you find respite for yourself as needed.
--Adapted by Marysue Moses, Ebenezer Dementia Care Program Coordinator, from Lewy Body Dementia Information for Patients, Families and Professionals, NIH Publication No. 13-7907, September 2013
There’s a lot of confusion out there about what is Alzheimer’s and what is dementia. Is there any difference between the two? Is one worse than the other? People sometimes assume there is no difference, or they get the false impression that when dementia gets “really bad," it becomes Alzheimer’s disease. That’s false, and very misleading. Dementia is a very general term, and is not a disease, in and of itself. It’s a syndrome, which simply means a collection of symptoms. In the case of dementia, the symptoms are evidence of a decline in mental functioning. Memory loss is usually the first thing we focus on when we start to list those symptoms, but it’s very important to recognize that dementia causes people to lose an important number of skills (language skills, motor skills, judgment, the ability to plan, to name a few), things that most people take for granted every day. As a result, people with dementia need a lot of help to manage their days.
There are many different diseases and conditions that can cause the symptoms of dementia. Alzheimer’s disease is one of them. In fact it is the most common cause of dementia; experts say it is responsible for 50 – 80% of the dementia that we see.
Dementia is not considered to be a normal part of aging, even though the chances for developing it increase as we age. By the time we reach the age of 85, 50% of us have dementia. Experts recommend that exercise is the single best thing you can do for your brain. Other lifestyle choices that may help ward off dementia include a healthy diet, getting plenty of mental stimulation from purposeful, pleasurable activities, quality sleep, successfully managing stress, trying new things, and maintaining social connections and interactions.
--Marysue Moses, Ebenezer Dementia Care Program Coordinator
Surgery has changed over the years. And so have your recovery options! With changes in Medicare and the Affordable Care Act, you may find that recovery after surgery is not as simple as being discharged from the hospital. In fact, you may find your post-surgical care options are a little confusing or overwhelming.
As part of Fairview Health Services, Ebenezer is here to help. Here’s a guide to help explain some of the many options your hospital physical therapy team in agreement with your surgeon may recommend.
Your health, physical condition, and the type of surgery you are having, determine the amount of time you spend in the hospital. Today, the average length of stay for joint replacement is now just over two days. Everyone is different and your experience may be different as well, here are some possible options for after surgery care.
Recovery after surgery at Ebenezer
After surgery, your care team may determine you need more recovery time before you can safely return to your home. Depending on your condition, your care team may recommend a transitional care unit. This time will help bridge the gap between hospital and home.
Transitional Care Unit – Ebenezer transitional care units – are located within our skilled care centers and offer short-term therapy and medical care in an environment staffed with 24-hour nursing care. Our team of physician and nurse practioners, transitional care nurses, physical therapists, occupational therapists, speech therapists, and social workers provide care specifically tailored to your recovery after surgery.
Ebenezer offers transitional care units at four locations throughout Minnesota:
Ebenezer Stay by the Day Apartments – York Gardens offers Stay by the Day Apartments as a short-term recovery after surgery solution, or to provide a sort term break for your caregivers. You can rent an apartment for a minimum of seven days to a maximum of 30 days. Care attendants are available 24-hours a day to provide health and personal care to meet your recovery needs. The apartments are fully furnished, meals are provided and utilities are included.
Ebenezer Care Suites – If your recovery after surgery requires more complex care, consider one of our Care Suites right here at York Gardens. Not only is our team available to provide top quality health care services around the clock, but you can recover after surgery in a homelike environment. You will be treated to a private studio suite or 1-bedroom apartment including private bathroom with walk-in shower. Enjoy restaurant-style dining, on-site beauty and barber shop and TV/internet service. Some care suites are fully furnished.
York Gardens Care suites are charged by the day and are paid for privately. They are an excellent option for those who still need recovery after surgery, but who no longer qualify for a Medicare paid stay in a hospital or nursing facility. Some long-term care insurance policies may reimburse you for these expenses. We encourage you to review your policy for more information.
Fairview Home Care
After surgery, your care team may send you home with a home care team. Fairview Home Care and Hospice, one of the Twin Cities most reputable home care services can provide the home care services you need to help you recover after your surgery.
Home Health Care – If you are discharged home after surgery but still need supportive health care services to stay safely in your home, your physician may send you home with orders for Medicare-certified home care services like Fairview Home Care and Hospice. Care is provided in the comfort of your own home through scheduled visits from registered nurses, home health aides, physical therapists, occupational therapists and licensed social workers. As one of the Twin Cities’ largest and most trusted home health care agencies Fairvew Home Care and Hospice is dedicated to helping you recover after surgery.
Private Duty Home Health Care – If you want to continue care in your home beyond the time that Medicare considers it medically necessary (i.e., when you are no longer “homebound”), Private Duty Care can provide the services you need to stay in your home. From medical and nursing care, to meal preparation and companion care, Fairview Private Pay Home Care provides the services you need to live independently in your home for as long as you need them.
Outpatient Rehab – If you have returned home but still need some type of therapy as part of your recovery after surgery, home care or outpatient rehab may be a good fit. Skilled therapists assist with your physical, occupational and speech therapy needs. Ebenezer offers two patient rehab solutions:
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