WHEN NURSING HOME PLACEMENT IS DIFFICULT

“Dad really had to go into a Nursing Home,” Janet, the daughter told me. She then told of how difficult it had become for her mom to take care of her dad.  Her dad Jerry had been diagnosed with Alzheimer’s disease several years earlier. Since his admission to the Nursing Home, Jerry had been constantly demanding that his wife take him home. After one month of this, her mom was starting to say she would bring him home.

Janet said it had been so very difficult for the family to take this step, of nursing home placement. That it had been done for her mother’s health and welfare as much as for her dad’s. She was dreading, yet one more difficult conversation with her mother. Of course she could just not say anything and let her mom go get her dad, even though she knows this would not end well for either of them. Avoiding a difficult conversation, is always choosing temporary peace over certain conflict.

This time Janet chose to open up to her mother and tell her what this would mean to Janet, if her mother brought dad back home. She began thinking through; what do I want, what do I want for mom, and what do I want for dad?   She then made  a date with her mother, when they could both enjoy some time together without distractions.

Janet began her conversation with her “I want” statements. After some discussion about what she wants for herself and the life she pictures for her mother, Janet talked about her dad. ” I want dad to be safe, well cared for, happy and living among people who aren’t strangers but really know him.” She told her mother she had just read this book that she would like to share with her, that will “help us get there.”

Please Get to Know Me – Aging with Dignity and Relevance, is the story of my journey during the 14 years my mother lived in a nursing home following a stroke. Offering the reader specific ways to help families continue to provide quality of life for their loved one  while helping their loved one, form connections with the nursing home staff.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

6 WAYS TO MANAGE ANGRY OUTBURSTS BY THE ELDER WITH DEMENTIA

Mike was visiting his daughter Marge and her family for the 4th of July holiday. Mike had called ahead and insisted he was bringing all the food. He arrived during a heavy downpour, and Marge standing on her porch urged him to stay in the car till the rain stopped. Mike proceeded by demonstrating an inability to reason on something so simple as staying out of the rain, and then immediately becoming angry, thus began the unhappy holiday.

Mike stated “No one was going to tell him what to do.” And he proceeded to get out of his car, struggling with his walker as he tried to carry his groceries to the porch. Mike not only wasn’t going to be told what to do, but he very much wanted to direct his daughter. When Marge said she would be waiting for the rain to stop before moving groceries, Mike went right into his now frequent response of “just do what I tell you!”

Starting the visit all wet did nothing to improve Mike’s mood. From this unfortunate beginning, Mike proceeded to engage his teenage grandchildren in conversation regarding the dishonesty of the healthcare industry.  Saying everyone in healthcare is crooked and only in it for the money. Mike’s son-in-law a dentist, quickly became frustrated with Mike’s outrageous behavior and soon was asking Mike to leave.

6 Ways to manage angry outbursts by the elder with dementia:

  • realize that this is an episode of agitated behavior and that in order to manage this well you need to be in control of your own emotions
  • take care of yourself first – whether it is with taking some deep breaths or whatever you normally do that helps you to remain calm
  • be aware that arguing or trying to reason with the unreasonable person with dementia is not possible
  • remove the “audience” it is harder for Mike to back down from outrageous things he says if the whole family is there, and seeing himself as the father figure, he wants to save face
  • instead of several family members entering into this argument making Mike think everyone is against him, only one person should engage in de-escalating the situation
  • be respectful and avoid becoming defensive, the angry words even if directed at you are not about you

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

DELUSIONAL NEIGHBOR – EARLY DEMENTIA

Bob considers himself a lover of animals, he feels all the little animals in his community need him. Bob would be amazed to know he is considered a “delusional neighbor.” Bob is well known in his condo community as the owner who is bringing an unwanted amount of small critters to the property. Bob throws peanuts and bread out his 4th floor windows into trees below and onto neighbor’s patios morning. noon and night to feed his friends. Bob extends his feeding to the parking lot, putting food out every evening next to his car, resulting in bringing skunks to the property.

As neighbors try to reason with Bob, pointing out the heavily treed grounds with many walnut trees for the squirrels and natural sources of food for all, Bob continues to throw out food. And that is the problem, you cannot reason away a delusion. A delusion is a fixed false belief that isn’t able to be changed by presenting facts or explanations.

Bob has lived in this condo, with these neighbors for 18 years. To all outward appearances Bob hasn’t changed much over these years. He has always lived alone here in his condo. Bob drives a car, maintains his property, even investing in upgrades as needed. Bob always appears clean and well groomed, wearing clean clothes. Bob does his own grocery shopping and prepares his own food.

However for the last year Bob has been so sure that the animals need him and need food, that he has gone against all the established rules of the condo association. He argues with his neighbors and although he has been fined multiple times for feeding the animals he has vowed not to stop.

Recently Bob has solved his own problem by deciding to move. He is relocating about 15 miles away from the condo and interestingly from his beloved critters. I can only wonder if he will leave this delusion behind and in the new and strange environment develop a new delusion. Suspicions and delusions are common in people with early memory loss. When the memory loss makes the person feel like something is wrong, but they cannot identify what the problem is, they will create a new explanation that, for them fits the facts.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

AGGRESSIVE DEMENTIA BEHAVIORS PUSHING, YELLING AND SPITTING

Persons with dementia may at times have difficult behaviors. Behaviors that may cause harm to themselves or others. Aggressive dementia behaviors, apply to pushing, yelling, hitting, grabbing, spitting or even trying to bite the caregiver. Persons with dementia who have these combative or harmful behaviors are considered to have aggressive behaviors. Some aggressive dementia behaviors are predictable and follow a pattern of actions or events. While other aggressive behaviors are isolated one time, events.

There are three basic types of aggressive behavior triggers:

  • Something is affecting the person with dementia internally such as a medical, social or psychological cause. This could be anything from pain, fear, frustration, hunger, thirst, unable to communicate, or needing to go to the bathroom.
  • Environmental triggers have to do with items, actions or events that cause over stimulation which turns into aggression. It might be that the environment is too noisy, temperature is too hot or cold, lighting is to bright or too dark, or maybe the person just doesn’t recognize any of the people around him.
  • The “caregiver trigger” applies to whomever is providing care for the person with dementia. It could be that the caregiver is tired or over stressed and not using the best communication techniques. They might not be providing care the way the person prefers or they just don’t know the likes and dislikes of the person they are caring for and, because of their poor care,  cause the behavior.

Knowing the person you are caring for can prevent those aggressive behaviors that follow a pattern and are predictable. Observe  the person’s body language, watch for wringing of the hands, rubbing their body, clenching fists, gritting teeth or the person can become extremely quiet before an episode of aggression. Knowing the person can prevent injury from aggressive dementia behaviors.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing 

DEMENTIA STAGES – TIME LINE

While every person with dementia has a different experience and progression. For dementia symptoms that follow the decline due to Alzheimer’s disease, these changes can be tracked in the following way.

Mild Cognitive Impairment: Very early changes noted in areas of forgetfulness, problems in locating lost/misplaced objects and loss of words. Changes cause concern yet mild cognitive impairment does not always progress to dementia. Many elderly people never experience an increase in this level of confusion. (this lose can occur very gradually over up to 10 years)

Very Early Dementia: No longer able to be gainfully employed, may becoming lost in familiar community, experiences anxiety due to having trouble always understanding environment.   Very important at this time to have hearing and vision checked to support the elder in understanding the environment. (2 years)

Early Dementia: Now diagnosed with dementia, possibly of the Alzheimer’s type, no longer able to handle finances, trouble identifying money, no longer able to do meal planning, no longer driving, unable to live independently, flattening of expression  (most noticeable in family group photos), emotional problems, withdrawn, tearfulness and sometimes anger. Starting to have problems with appropriate clothing choices and hygiene. (2 years)

Mid-Dementia Stage: Now need caregiver support for hands on assistance in hygiene, bathing, dressing, toileting, brushing teeth, significant problems with communication uses few words, is now incontinent of urine and beginning to be incontinent of bowel as well. Continues to be able to eat independently but totally dependent in all other areas of eating even cutting food and pouring beverages. (2 years)

Late Stage Dementia: Total care in all areas of life, need to be physically fed all foods, non-verbal, few people can walk at this point,  and requiring to be re-positioned when in bed, no longer moves independently.

Dementia stages vary depending on the disease causing the dementia, most notably in dementia caused by delirium or early onset dementia. The person with early onset dementia who is diagnosed at a young age goes through the dementia stages at a much faster pace.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing 

 

WHAT DOES THE PERSON WITH DEMENTIA NEED?

The person with dementia needs to feel safe, but not in a way that they feel restricted. The person with dementia has a need to understand. The person with dementia has a need to be understood. The person with dementia has a need to be healthy and physically fit. The person with dementia has a need to be spoken to like an adult.

The need to feel safe, means feeling comfortable and accepted. Many times when a person with dementia moves into a nursing home, they will talk about “going home.” Home is where you are comfortable, accepted and you will not be forced into doing something. In the nursing home setting it takes about a month for many to no longer ask to go home. It is not that they are now resigned to being in the nursing home. It is that they finally feel that acceptance and feel at home.

The need to understand, and be understood. Persons with dementia have lost their normal forms of communication. They no longer can communicate verbally or non-verbally their needs. Even the person who still has words has trouble expressing their thoughts and feelings. Misinterpretation of their environment causes more misunderstanding and results in fear.

The person with dementia has a need for nutritious food and exercise.  Nutritious meals, no junk food, supplement with B vitamins for stress and brain health, fresh air and exercise results in better sleep. (B vitamins should only be taken in the morning so they do not disrupt sleep)

The person with dementia needs to be included in conversations. They need to be addressed by their preferred name or title.

The person with dementia struggles all day long to understand their world and make their needs known.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

GETTING LOST IN THE COMMUNITY – WHY DO PEOPLE WITH DEMENTIA WANT TO WALK AWAY?

Harry was out to dinner with his family, and stood up saying he had to go to the bathroom. Soon it was noticed that Harry hadn’t returned. When a member of the family went to look for Harry they discovered he was no longer in the building. Two hours later, and after a search of the neighborhood, Harry was located wandering the neighborhood streets confused and unable to state why he had left the building. Harry has early dementia and had just walked away. Leaving a dinner party and even a restaurant unaccompanied is not a problem unless you are a child or are confused. Harry was confused, alone and quickly became lost in the community.

Current statistics tell us that about 60% of people with dementia will get lost in the community at some point. This includes people living in the community as well as those living in institutions.

Harry might not have been able to locate the restroom, or may have seen the exit and just thought to go home. Perhaps he used the restroom and then forgetting his family having dinner, just walked out the door. However it happened, after wandering the neighborhood for two hours, being tired and scared, he was not in condition once found to state what his actions were.

In this case, Harry was just confused and walked away. Many with dementia who become lost do so because they are actively trying to meet a social, emotional or physical need. As in the case of the woman who always feels her children are needing her, or the man who must get to his job.

Many years ago when Harry and his wife had young children, they had ID bracelets made for their children in case they would ever get lost. Now Harry is wearing his own ID bracelet for the very same reason.

The Alzheimer’s Association sponsors the  “Medic Alert – Safe Return” bracelet.  This  bracelet offers a 24 hour service, national data base and coordination of local support services. Well worth the price, in peace of mind.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

DEMENTIA BEHAVIORS – WHAT IS THE FIRST QUESTION TO ASK

To know if this is really a dementia behavior, ask the question, “What if this person was 20 instead of 80 years old?” This is a question I frequently ask caregivers when they report a elder with dementia as having “behaviors.” Because if this activity or response wouldn’t be a behavior for someone 20 why should it be for someone 80.

“Mary keeps standing up.”  That is the behavior the caregiver reports about her patient Mary. Well, I asked the caregiver,  “do you keep standing up?”  “Of course I stand up, all day I am getting up and down,” the caregiver shared.  While it is more than normal to want to stand and walk. The caregiver being afraid the elder will fall if walking unattended, will often standing up to be a dementia behavior.

Just standing up, might mean the elder needs a meaningful activity and she is bored. It could be that the elder wants to get away from something such as; too much activity, too much talk, too much stimulation. It could be that all of a sudden the elder realizes she is hungry or thirsty, and just stands up to get something for herself. Or what is frequently true in Mary’s case, she just has to go to the bathroom.

Rose was over 100, and really looked good for her age. She was cared for by a live-in caregiver, and Rose always looked company ready. But once ready in the morning, Rose was seated on the couch in the TV room. The caregiver enjoyed spending her day watching daytime dramas and game shows.

Rose had vision and hearing problems, and couldn’t follow these shows. Rose wasn’t even a fan of such programming, she was too polite to say she didn’t like the caregiver’s programs.  So Rose would often just stand up to go do something else. The day was spent with Rose standing and the caregiver telling her to sit down.

For a behavior to be a dementia behavior, the question to ask is, is this activity trying to tell me something? Is there a need that is not being met? Is the elder trying to fulfill an emotional need? Is the elder trying to fulfill a physical need? What is being sought? And in the case of Rose, is the elder trying to get away from something?

Whatever the dementia behavior is, first stop and think of that question, would this be normal for a 20 year old?

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

DEMENTIA – BAD BEHAVIOR AND HOLIDAYS

Children act out in the days leading up to holidays and parents shake their heads and say ” he has had too much sugar.” That may very well be true, yet children are certainly impacted by the hustle and bustle of holidays. And just as children are overwhelmed by the activities and anticipation, even more so is the elder with dementia.

However when the elder with dementia becomes angry and uncooperative, no one says “he has just had too much sugar.” And very often the solution proposed is some form of isolation, where what the elder may need is just the opposite. The elder with dementia may push family away with angry behaviors such as yelling, screaming, even pushing and at times throwing things.

There are also behaviors that are not as physical but equally as troubling such as, pacing, complaining, repeating themselves and general restlessness. What is important to remember is that the elder with dementia is not acting this way on purpose. The elder with dementia is always trying to understand his environment. Where he is, who is there, what is going on and most of all what might be expected of him.

While holidays are great is so many ways for the person with dementia, the music, colors, food, smells and decorations reinforce what is happening. The increase in  people, excitement, noise can push an already stressed elder over the edge. This is a good time for old fashion remedies. Activities that are calm, quiet and one on one.

  • a hand massage helps with anxiety, worry, sadness, and fearfulness
  • the old fashion back rub works wonderfully for those  in chronic pain or exhibiting irritability and anger
  • a foot massage provides calming for those with hyperactive behaviors, restlessness and pacing
  • massaging the forehead, temples and scalp help with tension and headaches

Added to the calming effect of the physical-therapeutic touch, some light smelling aroma, and you might be giving the best gift.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

HOLIDAYS A GOOD TIME TO HAVE THAT FAMILY TALK ABOUT GRANDPA’S DEMENTIA

Grandpa still lives alone in the family home and his daughters keep in constant communication with him by phone. Getting ready for the family holiday get together, required several phone calls to Grandpa to remind him of where and when they were meeting. After the big event , the daughters used their time with Grandpa to compare notes on how well their Dad is still able to function.

What they found:

  • Dad needed those frequent phone reminders – he had a 15 minute chat with the oldest daughter and the next day didn’t remember she had called
  • Dad had been mentioning that neither of his 2 hearing aids still worked, yet he was wearing both
  • Dad was now making strange and inappropriate comments to strangers, he asked a man in a restaurant if the design on his shirt was Nazi swastikas
  • Dad’s personal hygiene was in question, even though the holiday event was for an entire weekend at a hotel, Dad was wearing exactly the same clothes every day and on arrival it was apparent that Dad hadn’t bathed for some time
  • When asked what he has been eating, even though the daughters kept him well supplied with grocery delivery, he was choosing to eat all of his meals at the local fast food carry out
  • Dad had been asked to bring his latest report from his physician, after reviewing the doctor’s findings and recommendations, it was clear that Dad not only had no intention of following the doctor’s advise but didn’t understand most recommendations
  • Dad asked one of his daughters for a type of first alert button – in case he was taken to a hospital he could push the button and an ambulance or “someone” would come and take him out of the hospital

On the positive side, all of the daughters are on the same page, that Dad has dementia and needs their monitoring any changes. It is terribly hurtful and lonely to be the  only member of a family seeing signs of dementia. When even some of the family members are in denial of signs of confusion, it delays solutions. These daughters are realistic and pro-active trying to get ahead of future problems and support for their Dad.

Now after this holiday, they know that Dad might be needing some house help if the reason he doesn’t make meals is that he no longer can put a meal together. Some home help might be also needed for hygiene. One of the daughters needs to get involved in going with Dad to have his hearing aids taken care of as well as accompany him to his physician.  Dad probably would benefit by having a calendar to write down appointments and events. This way the daughters could check, just by calling and asking Dad what he has written down for a certain date.

The daughters know that as Dad continues to decline, (and they realize he will) he will be a candidate for an assistive living facility. When that day comes they will have to be united, it really helps to start now.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing