Dementia Caregiving

Questions and Answers

Dementia caregiving is a demanding job. You may have many questions and you may not have any time available to search out the answers.

One way to find the answers you need it to read through our site. We add to it periodically and if we don't have the answer you need we may have it soon.

If you don't want to wait that long you can do what some of our readers do and ask us a question. We love to hear from our readers! If we can help you please let us know.

We don't everything, but we know a lot, and now that our caregiving journey with our Mom has come to an end we have more time to research to find the answers you need.

Contact us here.

Below are some actual emails that we have received from our readers. (Names have been deleted and some editing has been done to protect the privacy of our readers.) We hope these answer some questions you may have.

Hygiene Questions

It must be tough to care for someone you know and love and remember how they used to be. For me, I am helping my husband with his grandmother whom I just met as she normally lives in another country. Now she is living with us in a house she owns here.

My husband can't stay home as he has to work so I have to watch her. I have no bond with her, but I do care about her.

I also very much care about her hygiene. She has adamantly refused to shower and it has been more than a week now. Online sites recommend drugging her with Ativan, a nerve suppressant.

Is there some other way to coax her into the shower without drugging her. I'd like to keep what little dignity she has left intact. I've tried making the experience fun, but I think because I am new to her she refuses to disrobe. My husband’s mother and aunts have also failed in getting her to shower. I am so close to giving her that drug, which was prescribed, but I still feel it’s wrong.

Any suggestions or ideas?

A Reader

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Dear Reader,

Thank you so much for your note to DementiaCaregiving101.com. We appreciate your trusting us to help you in your caregiving journey.

We would like to commend you for being willing to care for your husband's Grandmother. We hope you will be blessed beyond measure for the time, energy, and love you are investing in her life.

We can so relate to your hygiene concerns. Our Mother did not like to bathe. When she did "clean" herself her efforts were often less than adequate.

We aren't big fans of the drugging method either. Other than the obvious concerns of adding "yet another drug" to possibly several others she may be taking there is also the possibility of a negative reaction to a new drug.

Here are some tips that may help you to achieve a level of cleanliness that will be healthy and acceptable:

1. Encourage your Grandmother-in-law to take a sponge bath. She may remember these from her childhood and feel very comfortable giving herself one. This may not get her as clean as a shower would, but it is better than no bath at all.

2. Have her dress in a swim suit (a bikini if she will wear one) and let her shower in it. This will still let the water flow to those parts that she is uncomfortable exposing and she may take the initiative to use some soap in those areas too.

3. Try creating a routine around bath time. Have it be at the same time each day. First enjoy a relaxing cup of chamomile tea, dim the lights, play some soft music, maybe light a candle. Do things that will help her to relax. This may help her to lower her guard enough to let you help her to get cleaned up.

5. Study some books or websites on how to help someone with a bath. Being sure of your skills will help her to relax and trust you to help her. It will also help you to remain calm so that she won't sense any stress or nervousness and react to it.

4. Give her some time. We remember gym class in school all too well and taking off clothing in front of a stranger is a scary prospect! Get to know her, become her friend, and try not to be too stressed about getting her into a shower. Eventually she may relax enough around you to allow you to help with this task. If not, and you believe that she really isn't getting clean, then you may consider trying the drug, but only as a last resort.

We hope these tips help. We know how challenging caring for a dementia patient can be. Keep up the good work. You have our admiration and respect.

Please let us know if we can assist you further with this question or with any other question(s) you may have.

Blessings!

Paula Farris, The Encourager to Dementia Caregivers

http://www.DementiaCaregiving101.com

Challenging Decisions and Financial Issues

My mother is in the second year of her dementia diagnosis, but has probably had it for several years longer. We moved her very near to us last year.

She knows that she is quite forgetful, but she still argues and challenges much of what I tell her. She is continually saying that I didn't tell her something or that I told her something wrong. I don't know whether to correct her or just go along with her let her believe that I am making all these mistakes.

Also, I have taken over paying all the bills because she was falling behind. Also, she was "paying" every single charitable solicitation that came into her house. Even now, if I don't sort her mail and shred the solicitations, she will give money she really doesn't have.

Help!

A Reader

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Dear Reader,

Thank you so much for the questions you sent to our site. Thank you also for your patience in waiting for an answer. What I thought was a touch of the flu turned out to be pneumonia and it knocked me out for quite awhile longer than I had expected. I am feeling much better now and almost have all my strength back.

First, I would like to commend you for caring for your mother. Helping an elderly parent is never easy, but add to that the dementia symptoms and you can have a challenging time. I admire your willingness to help.

The major problem with dementia is that it causes forgetfulness and confusion. The caregiver can lovingly explain exactly what they are doing and why they are doing it, and their loved one may even agree with the decisions, but more often than not the dementia patient doesn't remember the discussion.

Because of the forgetfulness and confusion the patient may feel helpless. They may feel that they are being lied to or tricked, not because they believe that in their heart about you, but because the confusion is all they have to work with. Their reality is distorted.

I know this doesn't make your job as caregiver any easier. Dementia caregiving is demanding and can, at times, be heart wrenching. But there will be times of great joy--times when you still feel that bond you had with your mother in better times. These are the times that can keep you going.

As much as possible include your mother in the decision making process. Try to find a good time of day when you are both relaxed. It isn't always possible to plan for a time when your loved one will be alert, but if you are flexible you can be prepared to seize the opportunity when it comes.

If your mother still has the ability to read and to sign her name you can try to write down the decisions that you make and then both of you sign and date the paper. This will be a "contract" of sorts, a reminder of what was discussed and decided. This may help her to remember, but it may not help at all; if it does help it will be valuable!

Correcting a dementia patient is often useless, plus it can be very frustrating and possibly damaging to an already fragile relationship. If the written "contract" doesn't work in your circumstances it is often easier to "live in the patient's reality." Instead of correcting her try apologizing for not explaining things to her and then explain the situation again. I know that this can become time consuming and possibly very frustrating, but it is easier than trying to convince someone of something when they honestly don't remember what you are talking about.

Be sure to plan for fun times. Participate in enjoyable activities together. This will help to strengthen the friendship between you so that when the inevitable strains come they will be easier to deal with (at least for you.)

Paying her bills is a good thing. Our Mom got into some legal trouble over "ordering" something she had no use for. It took awhile to work all that out. She needed a lot of help in handling her finances.

It is a good thing to shred the unneeded mail. You mother doesn't have the ability to realize how to effectively budget her money or how to discern between an actual bill and a request for a donation.

Keep extremely accurate records of her income and expenses. Keep her finances completely separate from your family's finances. If it is ever necessary to apply for any kind of government assistance for your mother, being able to prove where her finances were spent will be invaluable.

If you haven't already added your name to her bank account(s) and gotten a Power of Attorney in place you may want to do this now. If your mother is no longer able to participate in these kinds of procedures consult an elder care attorney to find out what can be done.

Having the proper legal documents and accurate records can make things easier to handle if there is ever a challenge by another family member or if there is ever any kind of legal matter concerning your or your mother's assets.

I would like to stress that I am not an attorney. I only speak from my experience and the research I have done.

I hope this advice helps you and encourages you. Please know that you are not alone. And if we can ever help you with any other questions or concerns please don't hesitate to contact us.

Blessings!

Paula Farris, The Encourager to Dementia Caregivers

http://www.DementiaCaregiving101.com

Questions about Sundowner's Syndrome

I feel fortunate to have come across your site at dementiacaregiving101.com. I must congratulate you on creating such an invaluable resource.

My 84 year old father is suffering from Alzheimer’s and we are caring for him at home. Reading your experience is a source of inspiration, comfort and guidance.

I would like to know how you dealt specifically with the following situations:

1. The patient wanting to keep all the lights on at night.

2. Loud tantrums, shouting and babbling incoherently in the night.

3. Wanting to watch television late night and early morning.

4. Did your neighbors ever complain about getting disturbed?

5. Did your mother sleep alone in her room at night or did someone sleep in the same room with her?

6. Should you scold the patient for 'bad' behavior or offensive language?

I look forward to your response.

A Reader

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Dear Reader,

Thank you for your kind words concerning our site. It is an honor to know that we have helped you. Please continue to check back on our site often as we have plans to add much more to it.

I would like to apologize for the delay in replying to your email. I was very sick with pneumonia for the past couple of weeks and did not have the energy to think clearly enough to form a reply to your questions. I am feeling better now.

I would like to commend you for caring for your father. Dementia caregiving is a difficult job and your are to be admired for taking on this awesome responsibility.

Here are my answers to your questions:

>>1. The patient wanting to keep all the lights on at night.

2. Loud tantrums, shouting and babbling incoherently in the night.

3. Wanting to watch television late night and early morning.>>

This is a challenging situation! Alzheimer's patients tend to suffer from what is know as Sundowner's Syndrome which basically means that, much like a newborn baby often does, they get their days and nights mixed up.

Some medical professionals believe that this is an Alzheimer's patient's way of controlling something in their environment, a type of rebellion against a world that no longer makes sense to them.

Others think that Sundowner's Syndrome is the result of stress or fatigue in the dementia patient. But there is, at current time, no definitive answer on what causes these symptoms. They obviously have something to do with the sun going down, of course, because the symptoms worsen at night and tend to improve shortly after the sun rises.

Much of the care of an Alzheimer's patient is done by trial and error and what works very well for several months may suddenly stop working for no apparent reason so I will give you some suggestions on how to help relieve these symptoms, but be prepared to continue to try new strategies as necessary.

Since stress is a possible factor in Sundowner's Syndrome it is important to make life as simple as possible for the patient as well as the caregiver(s).

Set a simple routine and stick to it. This is especially important if your father was a very structured person when he was younger. Post the routine on the wall somewhere where he will see it often. Knowing that there is a specific time for each of the day's activities will help his body clock to set itself for bedtime.

A specific bedtime routine is very important. Doing the same things, at the same time, in the same order, each night before bed will send his mind the signal to settle down and go to sleep.

If he is not used to a routine (or if you are not used to following one) give this method time to become established. If you just plunge right in and think that you will both suddenly start to follow a very strict schedule when you aren't used to it you will probably fail. Start slowly, maybe just implementing the bedtime routine for a few weeks then add a little more structure at a time.

While you are working on developing your routine take steps to remove stresses from your lives. Dementia patients have difficulty focusing on complex tasks so don't expect your father to do more than one thing at a time. Clear the clutter from his living area so he doesn't become confused when looking for his glasses, or the toothpaste, or the book he is reading.

If Sundowner's Syndrome is a form of rebellion, as mentioned earlier, then boredom may be a contributing factor in this behavior. Be sure that your father has opportunities to express himself through things he enjoys doing, i.e., gardening, singing, painting, dancing, etc. Make time for a social life so that he can continue to fulfill the emotional needs we all have.

But, while activities may help, be sure to not plan so many things in a day that your father will become fatigued. Schedule rest time into your schedule also so that when bedtime comes he won't be too excited to settle down.

These are just a few suggestions to help with the symptoms of Sundowner's Syndrome. I am working on an article on this subject and hope to add it to the site in the next few weeks.

>>4. Did your neighbors ever complain about getting disturbed?>>

We were very blessed to have very quiet neighbors by our Mom's house. If she did disturb them they never complained.

If your neighbors have been complaining about noise or other disturbances be sure that they know why your father acts the way he does. I know that you may not want to tell them everything, but a simple explanation and maybe recommending that they visit our web site for more information may at least let them know that you are aware of the problem and are trying to find a solution.

>>5. Did your mother sleep alone in her room at night or did someone sleep in the same room with her?>>

Our step-dad slept in the same room with Mom, but Mom didn't often sleep. She would start to put her pajamas on, stop halfway through, fall asleep sitting up on the edge of the bed for about an hour, wake up, get dressed, make the bed (which usually involved changing the linens and straightening the blankets "just right." ) Then she would start the process all over again! It was exhausting to watch. If we "woke her up" to try to get her in bed the correct way she would think it was morning and get ready to start her day. She finally would pass out from exhaustion around 4:00 a.m. and then take several naps through out the day.

If your father can be left alone then make sure that the house is safe for him to wander around in (including securing any outside exits) and let him stay awake if needs to.

Our Mother couldn't be left alone so we tried to have someone in the house who was awake and alert 24 hours a day just in case she decided to get up at 1:00 a.m.

If possible get this kind of help from other family members or friends or hire someone to come and sit through the night with him. The primary caregiver needs to get adequate rest or the daily jobs and decisions will become overwhelming.

>>6. Should you scold the patient for 'bad' behavior or offensive language?>>

Scolding an Alzheimer's patient for inappropriate behavior is useless. They do not understand that they are "being bad" and may get angry at you for scolding them or may get their feelings hurt for what to them was an innocent mistake.

It is often more effective to redirect their behavior than to correct it. Always be alert, especially in public, of where the exits are and think of a few ways to change bad behavior before it becomes an issue. For example, if your are meeting friends for lunch and your father is talking loudly in the restaurant try to interest him in the menu or the appetizer.

Always have an exit strategy so that you can gracefully leave in a hurry if necessary. This may include paying for a meal up front in case you need to leave before the check arrives, or sitting on the back row at church in case of loud talking.

There may come a time when taking your father out in public will be too difficult and stressful. Prepare for this time, by taking up activities that you can both enjoy at home and by developing a support system that will allow you to be able to take care of your obligations outside the home while you know that your father is safely cared for at home.

I hope that these answers help you. I would like to emphasize that I am not a medical doctor and only speak from my experience and the research I have done. Dementia caregiving is a difficult task, but it can be done.

If we can answer any more questions or address any other concerns please let us know. We look forward to helping you!

Blessings!

Paula Farris, The Encourager to Dementia Caregivers

http://www.DementiaCaregiving101.com

How Do I Deal With My Mom's Anger Toward Me?

My mom's doctor insisted that she be placed in assisted care after she was hospitalized for overdosing the meds she was on. She experiences Sundowners Syndrome.

I am an only child with a family and so I placed her in a wonderful assisted care facility. She is very angry with me and has gotten very nasty. She has threatened me with court dates, lawyers, suing me, etc.

My teen-aged son won't have anything to do with her because of an outburst she made in public while taking her to church with us.

I guess I need help to know how to deal with this. She feels that I'm taking her home, her money, and her independence, but I can't leave her at home. The care she is getting is wonderful and it gives me peace of mind knowing she is safe. I just am having trouble coping with her anger at me. Any advice would be helpful as my stress level is extremely high.

A Reader

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Oh, Dear Reader!

How hard this must be for you to deal with. Your letter brought tears to my eyes.

Dementia is such a cruel disease. It steals not only the memory and thinking skills of a person, but it also steals the relationship we once had with them. I feel your pain.

Unfortunately one of the treatments for dementia is often medication, but the prescription is given to a person who may no longer be able to properly medicate themselves. This often leads to the scenario you describe.

Your situation is also made more difficult by you being an only child. You alone have to make the difficult decisions and you also have to deal with your mother's reactions to those decisions.

Bringing a dementia patient to live in your home is a huge commitment and not everyone can make it work. There are financial, emotional, and space considerations to consider as well as a myriad of other things to arrange.

My sister, Lanette, my husband, and I spent many hours discussing how it would be possible for my Mom to move in with us since her living with my Step-dad had become very difficult due to his medical problems. As much as we planned, and organized, and maneuvered we could not figure out how to make it work. Had she lived longer, we were planning to place her in a small assisted living group home. I know that would have made her angry and, although I am sad that she is gone, I am glad that I never had to deal with that anger.

Do you have any other relatives that could help? Perhaps an aunt or uncle or cousin? Having a family member or even one of your mom's close friends to help to make decisions could provide you with some relief.

I know that your mom is very angry with you right now, but perhaps she could spend a weekend in your home or maybe a holiday like the 4th of July. Being around her family may help her to calm down, though she will probably become very angry again when she has to return to the assisted care facility.

My teen-aged sons also distanced themselves from their Grandmother during most of the last couple years of her life. She was difficult to be around at times and sometimes made decisions that hurt their feelings. It was hard for them to handle.

Of course being embarrassed in public, no matter what the source, is one thing that really upsets teenagers. Helping your son to understand the symptoms of dementia and why grandma acts the way she does may help him to accept her and to want to spend some time with her, but don't push him into the relationship.

Spend some time looking at old pictures and reminiscing about the good times with grandma. Sadly, those days are gone, but remembering the good times and understanding the present can help to bring healing to the future.

Since you chose a safe, clean, comfortable living arrangement for your mom at the recommendation of her doctor she probably wouldn't have much to stand on in a lawsuit. Those threats are probably just her anger and confusion speaking.

It would be a good idea to keep meticulous records of all financial and legal transactions to avoid any question of wrongdoing. Save all receipts and if possible consult with an elder care attorney and maybe an estate planning attorney to see if there is anything that you should be concerned with.

I would highly recommend that you join a support group for dementia caregivers. Check online, at the library, the hospital, your community resources hotline, or with your Mom's doctor, or the facility where she lives to find one in your area. Meeting regularly with people who are going or have gone through what you are experiencing can be so comforting and helpful.

I wish I could tell you that in time your mom will not be so angry, but that may not happen. I know that last spring my sister and I spent many days clearing out clutter and cleaning my Mom's house. We worked very hard and got only anger as a reward. She said that "if we wanted to throw away someone's things that we should go throw away our stuff." She didn't understand that what we were doing was for her health and safety.

Your mom doesn't understand either. In time she may adjust to her new living arrangements and possibly even make some friends there. But there will probably always be times when she remembers her anger at you and starts to threaten you again. This is the nature of dementia.

Continue to love her, to see that her needs are met, remember her on her birthday, on Mother's Day and any other holidays that you celebrate, but remember that the precious memories that you have of her will have to be enough because there may not be any more.

I am here for you. If you have any more questions or need someone to listen to you please contact me. I am not an attorney, a doctor, or a professional counselor, but I have been there and I understand.

Blessings!

Paula Farris, The Encourager to Dementia Caregivers

http://www.DementiaCaregiving101.com

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