The person with dementia may or may not be aware of his or her condition at this point. The world is simply very confusing and very disorienting.
Emotions run high
At this stage in the disease, it seems like nothing is reliable. For the person with dementia, this may bring on paranoia. He or she may put something away and have no memory of having done so. When the object cannot be found, the only conclusion that makes sense is that it was stolen.
When the reasoning part of our brain can no longer function, we all fall back on instinct. This can be very wearing for the family members caring for a person with this level of memory loss.
At this stage, the person with dementia may become a danger to self and others. For example, he or she may not recognize an emergency. He or she may not know what to do or who to call. Something as “simple” as using the phone may now be a lost art.
Driving is no longer safe at this stage. And cooking may be a fire risk if the person forgets and leaves the stove on.
The ability to live independently is questionable.
Life can still be fun
Although memory and logical thinking are impaired, it is important to remember that your family member can still enjoy life. Activities just need to be simplified. They need to be broken down into single-step processes. If you focus on what’s still there, rather than what’s gone, you will see opportunities for joy. For instance, sense of humor may be much the same. And if you can be tolerant of repeated stories, the person with dementia can get great pleasure out of revisiting the past.
Routines are important. Your family member will still want to be involved in life. He or she may be able to do things out of habit or long-term memory. Sticking to routines, therefore, is very comforting. As much as possible, do things at the same time in the same way each day.
Reduce clutter, noise, and stimulus. With memory failing, much of life seems “new.” But this can be tiring. Having to process lots of information at once can be overwhelming. For instance, taking your relative to a boisterous family gathering might not go over well. Instead, strive for calm, unhurried situations. Your loved one will feel much less stressed if things are kept simple.
Emotional sensitivity is high. People with dementia are very perceptive emotionally. They may not be able to follow the words in a conversation, but they “read” tone of voice and body language. In a tense situation, your relative will become tense. If he or she is treated like a child, your family member will likely become indignant. Just because the mental processes do not work well does not mean that a person has lost the memory of being respected, or of what a respectful or disrespectful tone of voice sounds like. Without memory or reasoning, your family member is relying on instinct to get through the day. He or she will seek basic feelings of safety and connection.
Do not insist that your relative try harder. Forgetting is not about laziness or lack of practice. It’s the result of the disease that is causing the dementia. Your family member’s version of events is very real to him or her. Discounting it or trying to prove their version never happened will only build anger and mistrust. Instead, accept that your relative sees things the way he or she does and work around it as best you can.
Memory cards can help with anxiety and caregiver frustration. People with dementia often get anxious and will worry about a particular issue. They will ask the same question over and over. No matter how often they hear the answer, they don’t remember it, so they ask again. This can wear down the patience of a saint. Research has shown that if you write the answer to a question on a piece of paper, such as an index card, and make a point of putting the memory card somewhere special (a purse or on the refrigerator door), people with dementia can often remember to go look for the answer. At the least, when they ask their question, you can remind them that the answer is on the card and where they should look. You are spared answering the same question over and over, and they are empowered to get relief from their worries.
Social inhibitions are gone. Your relative may do things that are very natural but cause others embarrassment. For instance, your mom may take off her clothes if she is hot. Your dad may comment that someone is ugly or has bad breath. Families report that coping with embarrassing behaviors is one of the more stressful aspects of caring for a relative with dementia. Look for clues or triggers that have caused past incidents. This can help you foresee, and prevent, a future event or outburst. Explaining to others that your relative has dementia can also help ease the embarrassment. Once people understand, they can be very compassionate. Keeping a sense of humor never hurts.
Getting lost. This is the stage when your family member may still have enough physical strength to walk long distances, but lacks the ability to remember how to get home. If you have not yet registered your relative for the Safe Return program, it is wise to do so now. This program provides your loved one with a bracelet that identifies him or her as a person with dementia and includes contact information. It also helps law enforcement personnel identify and find your relative if he or she should wander away. This may be time to put locks on doors or even install an alarm so your relative cannot leave the house without alerting whoever else is living there.
Bathing is an issue. Bathrooms are cold. Water is noisy. The tub may be slippery. Soaping down and shampooing hair is actually a complicated process. If your family member is a modest person, he or she may feel uncomfortable having help with bathing, even from a spouse. Heat the bathroom first before bathing. Run the bath before your relative comes into the room. Install grab bars and nonskid mats and use a bath bench to help your family member feel less fearful of falling. Have bathtime occur at the same time of day. Mornings are often best when the person you care for is less fatigued. Try rinse-free soap. And remember, sponge baths in the bedroom are often an easier, and equally effective alternative to baths and showers.
Nighttime restlessness. About 20% of persons in the middle stage become agitated or restless at night. Restless behavior may start in the late afternoon as the sun goes down and extend until the wee hours. There are many theories why this occurs, but no one knows for sure. The best remedies are to have a physically active day and discourage an afternoon nap.Reducing or eliminating sugar and caffeine late in the day can ease restlessness. Turning on lights around 3:00 p.m. and leaving them on low throughout the night may help. Some people find closing the blinds or curtains at 3:00 is also helpful. If nighttime restlessness persists, talk to the doctor. As with any disturbing behavior, some other factor may be causing discomfort or anxiety.
Our family worked with Marsha Raines of Aging Well Rochester at a crucial moment when our mother was experiencing a decline in her physical capacities after living on her own for most of her adult life. Marsha was our guiding light throughout the process: explaining, with compassion, the various options for Mom; guiding us through the application process for both rehab and long-term care; and ultimately, settling Mom in at her wonderful new home where she is safe, comfortable and happy. I wholeheartedly recommend Aging Well Rochester!
Was connect with Marsha from Aging Well Rochester while searching for assistance with understanding the system and what is needed for elder parent. Marsha provided me with information, guidance, and took the time to explain differences between assisted living, independent living, and what questions to ask while interviewing for a new home for my mother. Valuable information. Marsha continues to follow up to assist if needed. Very pleased and so glad found Aging Well at a crazy time.
Coming to grips with a parent's decline and figuring out how to meet their needs can be a terribly stressful ordeal. Marsha and her team made it vastly less so. Marsha's calm demeaner, wisdom and professionalism were invaluable during the 8 months during which my father's needs were rapidly changing. She has a wealth of knowledge about resources available in the community and was able to bring them to bear quickly. I will be eternally grateful for the emotional support she provided during the entire journey.
At a time when you don't know what you don't know, Marcia knows! She asks the right questions, narrows the choices, and provides direction. She definitely helped us feel more confident as we moved forward, and she was thoughtful enough to follow up to be sure we were making progress. Highly recommend.
Marsha and staff were exceptional in their guidance though the difficult and unfamiliar journey of finding quality care for our aging parents. For over three years, they were able to anticipate needs, advocate for our parents, and provide support for them through various crises. We are so thankful for their expertise and compassion through all the changes. We highly recommend Aging Well Rochester to anyone seeking help with aging loved ones.
I just want to thank Aging Well Rochester for their assistance to complete an urgent PRI for my stepmother and also one for my father in case we needed it. The nurse went above & beyond to do that for us as we fortunately found a bed quickly for my stepmother. All went well & she is now receiving wonderful care at St. John's Home. Thank you Marsha and your staff - you made a difficult situation much easier.
Marsha Raines was incredible--responsive, caring and very knowledgeable. She helped me navigate options and provided excellent counsel. I highly recommend Aging Well to you if you are facing a difficult and emotional situation with a loved one who needs ongoing medical/rehabilitation placement and services. Marsha exceeded my expectations. Christine L.
Our initial consultation with Marsha Raines was very informative as it provided our family with a starting point concerning a long term care plan for our aging father. Her knowledge, experience and compassion allowed her to assess where each of us were in dealing with the emotional stress of the situation and provide recommendations to get us moving in the right direct with a long term care plan. Marsha helped us narrow our focus to ask the right questions regarding our next steps in care for our father. Thank you Marsha!
We were exceptionally fortunate to have Marsha Raines of Aging Well Rochester assist us in placing my wife in an appropriate facility. She guided me through all the paperwork, answered every question I had and resolved every impediment that we found in the process!Thanks so much Marsha!
We received great service from Marsha. Highly recommend. Navigating rehab and long-term care can be daunting. Marsha breaks down the ins and outs and helps bring the family to consensus on the best next steps.
Our family reached out to Aging Well Rochester for an understanding of the options and to seek clarity as to next steps for our elderly father regarding his future care. Marsha provided our family with the assistance, guidance and resources necessary to make a decision that was best for our father. Marsha's response to e-mails and phone calls was always in a timely manner and we truly appreciated all of her knowledge and expertise and would not hesitate to recommend Aging Well Rochester!!
Marsha understands the world of aging and the decisions that need to be made. She has both the education and experience to navigate a complex system to secure the best care as well as the expertise to guide throughout the process. My wife and I are grateful for her depth of knowledge, experience, skill, and compassion. We plan to use her as a resource for years to come!
Marsha Raines and her team have been a gift to my family. I'm on the West Coast, and her local knowledge has been extremely valuable in locating care options and knowing what to look for. Her direct style does not shy away from talking about tough issues, and in fact, makes it easier to devise a care plan. Marsha is a gem.
I truly appreciate the advice Marsha has to share. She has a great way of putting things into perspective and knows her stuff! Thank you for the advice, help, and input while trying to figure out the next steps with my parents.
I hired Marsha Raines to help me find the best Nursing Home for my husband. She was professional, quick to answer any questions I had, told me all I needed to do, and quick find him the right place. She was extremely helpful and compassionate with this difficult undertaking . I highly recommend anyone searching for a home for their loved one call Marsha before doing anything else!
Marsha level of expertise in this field has been tremendous. She explained the changes that occurred in the nursing homes industry. She took the time to research nursing homes for me and this afforded me time to focus on my mother's medical needs. I found Marsha to be resourceful and committed to helping me through this difficult time. I would highly recommend her service to you.
We moved our mom to a memory care residence, and in just a few short weeks we realized that it was not the right place for her. Distraught that we had made a horrible mistake, we needed help. I contacted Marsha and she met with our family to help sort things out. She took our concerns seriously, consulted with other industry professionals to assess our mom, and found us a better place for her. Just two weeks later we were able to move mom to a wonderful residence that cares for her properly and gives us all peace of mind. We are so grateful for Marsha and her ability to navigate the challenging world of eldercare on our behalf.
My husband, Bradley, needed to be moved to an adult home due to my inability to continue caring for his needs. I had no idea where to turn until Marsha Raines name was given to me. It is very difficult to navigate this process while you are under stress and her kindness and actions got the process started making it much less painful. I highly recommend her for her insurance knowledge which was extremely helpful to me.Mary Ellen Hindson, Rochester, NY
Marsha Raines assisted our family through the most trying time of our lives with Mom. She was extremely knowledgeable about placement, finances local care available and placement. She was personally involved in contacting the care facility to assist in mom getting placement.Her recommendation of the Presbyterian Home was spot on. All grants recommended came through and we were able to continue her care until she passed away.Thank you Aging Well. I would recommend her services highly.
My parents needed more assistance than I could give working full-time in another state in 2015. They were facing medical issues and needed to move out of their beloved home of 60 years. Since then, Marsha and her team have been instrumental in supporting my parents, and me, through good times and bad. They arranged movers, set up and attended doctor appointments, arranged for aides and companions to assist my parents in living safely and independently, and checked in on them to be sure they were comfortable and happy. Marsha has been an incredible resource to me, providing information and advice when needed in a direct yet sincere manner. I feel relieved to know that Marsha is there to help when I can’t be, keeping me informed, and checking in when needed. She is an incredible resource and advocate for the elderly and their families.
I contacted Marsha two weeks ago. I quickly learned that a PRI, exam to determine the level of care was needed to go into a nursing home. I was given 10 local agencies that could do it. I chose "Aging Well". Marsha was so personable on the phone, getting all the fact. She was able to arrange the exam in 5 days. The nurse showed up on time and my aunt chatted away. Two days later I got an urgent call from my aunt begging me to find her a new place immediately, she had a horrible weekend and wanted out. So, I called Marsha back that same day and asked her to take our case on and help get my aunt placed ASAP. She was pleased to help. She sent me the 3 applications to the facilities my aunt wanted by the end of the day. She kept in close contact with me the next couple of days with words of encouragement while I scrambled to get the information. I submitted the first one. Marsha personally went into the facility and spoke to the intact person giving her more details of my aunt. 5 days later, I moved my aunt into the facility she wanted. Here is a photo of her reaction. Marsha is focused, very knowledgeable, explains the process well, upbeat and is very encouraging. I would work with her again in a heart beat. She is the best.
I have worked with Marsha for 5 years now and have been consistently impressed with her diligence and dedication to providing top notch innovative and caring service. She creatively reaches out to others in the community to put together programs that will provide her clients with the high quality care they need and deserve. She is an extremely responsive and creative care manager!
I have been working with Marsha since 2008 planning for the aging process and various transitions for my parents.She has always been incredibly helpful, knowledgable and available. Over the years she has grown the organization, but still maintains that level of support. Her manner is caring and supportive yet direct, a quality that I have found very comforting and helpful during stressful transitions. I can't recommend highly enough.
Aging well Rochester did an AMAZING job of helping my family deal with my experience and Hospitalization with Covid 19. Marsha worked with my children and family and the hospital staff to make sure that I would receive the care needed upon my return home. I can't thank them enough for making this experience as easy as it could be.
Living more than 500 miles away from Rochester, visiting my mother as often as we would like was a challenge. Luckily I found Marsha Raines and her colleagues at Aging Well Rochester. Their visits to my mom were so frequent and warm that the staff at the nursing home thought they were family! Actually that's how we think of them. In addition to the care and support for my mother, the feedback and advice Marsha and her colleagues provided us was always timely and helpful. I consider the day I found Marsha to be one of my luckiest. I can't imagine the last few years without Aging Well Rochester! Thank you for enriching my mother's life and ours.