Biased? Yes!

Q: I have seen your forum and read your blogs, you seem really biased in regards to "adult family homes" don't you think that other care facilities can provide quality care for our elderly? I think you are too biased!!

A: Thanks for sending me your question. I will be more than happy to answer it to the best of my ability. One saying comes to mind. Don't judge a man until you have walked a mile in his shoes.

In the past 10 years I have walked the halls of adult family homes, assisted living facilities and nursing homes. I have taken residents into my adult family home that were residing in assisted living facilities and nursing homes. I know first hand the kind of care residents receive in adult family homes, and it so many times exceeds the care received in either assisted living facilities and the care received in nursing homes.

If you will notice on my forum, I do discuss what kinds of care levels are appropriate for different facilities. (See Three basic types of Long Term Care Facilities ) I would be seriously mistaken in my suggesting that every single person must receive care in an adult family home. There are always exceptions to the rules. And I would ask you to please keep in mind the postings you have read are only my opinions. They are not hard and fast rules for everyone.

However, it is my firm belief that our elder population deserves more than institutional living. They deserve a home. A staff that doesn't have a high turn over rate. Just like you and I, an elderly person deserves a chance to live in a place with familiar faces. The chance to eat delicious homemade meals. Elderly people deserve a person that will provide them a home in the last years of their life. Elderly people deserve to have someone assist them with their bath when they are ready, not when the schedule dictates. They deserve a type of home that is like an extended family. Someone to be right there when they have fallen or someone to hold their hand when they are dying.

I don't believe that I have set myself in a corner, because I believe in what I am advocating. I have extremely strong convictions and I will not waver in those convictions. I would rather have these convictions than not care about the elderly population I work so hard for.

It would be easier for me to say that I don't have these beliefs and just guide families into mediocre assisted living facilities, or keep my mouth shut, when they say they want their mother to live in a nursing home. Assisted living facilities are an easy sell to families.They have staff hired just to sell, they often own the nursing homes too, so it is in their best interests to build beautiful buildings and promise the families that their mothers' or fathers' needs will be met. Unfortunately they all too often are selling a facade. Assisted living facilities are usually understaffed and often struggle to keep up with the elderly persons' contantly changing care needs.

Thanks for your great question! ~Dutchy

Q: How will I know if I am suffering from burnout?

A: One of the most important things to recognize is if you are burnt out. It will ruin your health if you don't get relief. Don't be afraid to admit it!! I found this list on a great website, and wanted to share. Some of these things I have never admitted, I like to be the strong supportive one. If you would like to talk about options when you do burn out, let's talk.

The risk of burnout by family caregivers is well known, and it's important to be able to recognize the signs, so that timely help can be given. Here is a list of warning signs:

1. The caregiver appears withdrawn from friends and social activities that were once pleasurable. Toward the end of my ten years at the adult family home I found myself making excuses to stay at home without my family.

2. The caregiver displays anger towards the patient, or others, because there seems to be no effective treatment or cure, and not enough is understood about the disease. While I never did get angry with my ladies, I stopped going the extra mile and just did the basics. I still gave lots of kisses and hugs though!

3. The caregiver is in denial about the severity and ultimate outcome of the disease. I started to feel bad, like their was something more that I could have done or should have done.

4. In spite of this, the caregiver seems anxious about facing another day and what the future holds. I tended to feel like my life had become a living nightmare. 5 women with alzheimers, 12 deaths in our home, I was putting a distance between myself and the ladies, just so I could cope.

5. Depression sets in, affecting the caregiver's ability to cope.I begged the home doctor who visited my ladies to give me drugs! I often thought that the Lorazapam might do me a bit of good. However, the doctor said, I was just stressed! He thought I would make it!! I did!


6. Exhaustion makes it hard for the caregiver to finish the day's tasks.Had it not been for my wonderful employees and a husband who ran a lot of errands for me, I would have crumbled!!

7. Lack of concentration makes even simple tasks seem insurmountable. I was begining to feel like I had early alzheimers!!

8. Irritability leads to moodiness and triggers negative responses. No one really likes to admit they are negative, but I am sure my kids and husband were wondering what was wrong with me!

9. The caregiver sleeps badly because of a never-ending list of concerns. My sleep patterns were so messed up, that I thought I was going insane. We visited friends a month after we moved out of the home, they mentioned how great I was looking, now that I didn't have that permanant look of the "deer in the headlights!"

10. Health problems crop up, and begin to take a mental and physical toll. While living there I had to start taking blood preasure medicine. Last month the license of the home was transfered to another provider. Just this week, my blood preasure read normal.

While the above checklist was prepared with Alzheimer's disease caregivers in mind, the points are equally valid for diagnosing burnout in family caregivers of stroke, cancer, or other chronic disease victims. Family members and friends should make arrangements at once for caregiver respite - whether by enrolment in a semi-organized respite program, or by an informal duty-rota relief scheme.

3 Basic types of long term care facilities

Many people have asked me to explain the differences between the various types of long -term care facilities. Here is a posting from our forum that describes 3 different types of facilities in Washington State. Not all states have adult family homes. Oregon has adult family homes but they call them adult foster homes. I hope you find this helpful ~ Dutchy

www.mycarelink.net/phpBB2/viewtopic.php?t=38

Mom needs more help than I can give

Q: I have been taking care of my mom for two years now. Her care has become really hard. Where do I even begin with the process of finding her a facility to live?

A: There are many things to consider when you are ready to place your mom in a long-term care facility.

You must first determine what kind of care your mother will need.
In saying that the care has become hard, do you mean that she is keeping you up late at night? Is she requiring 24-hour supervision? Is she incontinent?

You might want to start by making a list of problems your mother needs help with.

Is your mother at high risk for falls, malnutrition, under-medicating, or over-medicating herself? Can she do any activities of daily living such as, dressing, combing her hair, or brushing her own teeth?
What kind of judgement skills does she have when it comes to basic activities of daily living
Is she able to bathe properly?
Is she able to judge for herself when it is time to change her clothes?

Next you need to consider what kinds of services your mother can afford. Eldercare can be very expensive. If you know that your mom will have to have state assistance in paying for her care, you need to contact your local Department of Social and Health Services. They will help you get started on the paperwork necessary to assist with funding whichever long-term care option you choose. If your mother qualifies for assistance the social worker with the state will be able to assist you by informing you of all of the care options available in your area.

In order to be eligible for state funding your mother may have to spend down her money, or liquidate assets. Perhaps she will have enough money to pay for private care for a certain amount of time, then will need to go on state funding.

If you know that your mother is financially able to pay for her care then you may wish to contact a long-term care advisor in your community. A long-term care consultant will be able to help you sort through your care options. They have a wealth of information and can even take you on personal guided tours of various facilities. The advantage of using a long-term care advisor is that they know the types of facilities in your area and can give you advice based on your mothers care needs, help you evaluate your financial situation, and answer many questions you have along the way.

While this may seem like quite a bit, it is a place to start.
Please contact me if you have any further questions......Dutchy

Totally Burned Out!

Q: I have recently tried to get my mother who has dementia into a group for geriatric patients for group therapy, however she just afraid to go without me. Please help totally burned out? - Debbie C, Tacoma, WA

A: Debbie…that is quite a question actually. Let me break that down a bit, by asking you a few questions myself.
1. What exactly is the group therapy doing for your mother?
2. Are you sending her because she needs it? Or perhaps you need her to do it?
3. What is the goal behind the counseling, do you have a clear objective for this course of action?

I am not an expert on the subject of geriatric counseling, but if you, in your mind have clear answers for the above questions and if you wish to continue to encourage your mother in this direction that would be entirely up to you.

Second set of questions I would ask you are these.
1. Why is she afraid to stay with out you?
2. Is it worth it if she is afraid?

Your mother may be afraid to stay at this group for several reasons. First of all she may rely on you as a social support more than you think. In unfamiliar social situations you may have been picking up the slack more than you realized . Since this is probably a new situation for her, one she may be unfamiliar with, adapting at her age would be tough in itself, adapting at her age in unfamiliar territory another thing. But, adapting at her age, in unfamiliar territory, and having dementia, may just be way too much to expect of her.

Sometimes it is hard for us to adapt as the children to our parent’s regression. Especially when it seems like this should be a simple task for them.

Another aspect that may be in the back of her mind, considering the generation she comes from, is that if the word therapy is involved, she might have negative feelings about it. These negative feelings might make her a bit reluctant to participate.

Third set of questions
1. If you are burnt out have you availed yourself of a support group or system?
2. Are you feeling the common emotion of caregiver guilt?
3. How can I support you?

The part of your question that seems to be the most pressing is the fact that you mention you are burnt out. When caring for someone with Dementia it is easy to burn out. Dementia should be defined as a series of serious adjustments. The rules are not consistent, what works one day with someone who has dementia may not work the next. The inconsistency, the repetition, the suspicious nature, the depression, just to name a few is enough to make a normal healthy caregiver go in sane! Don't ever feel guilty for being burnt out! You have done your best.

Taking a proactive approach to getting relief when you are burnt out is a very urgent concern. Now would be a good time to talk to a long-term care guidance counselor. Perhaps you aren't ready to place your mother in a care facility; there are many options for you to consider. If you are able to consult with a long-term care counselor they will be able to assist you in developing a road map or plan for your mothers’ continuing care needs. A long-term care counselor will be able to help you address ways to deal with various aspects of burn out.

I would be more than happy to help you through this process. And I don’t charge for my services! ~ Dutchy

Grandma has been dead for years

Q: My mother keeps asking me where her mom is. It creeps me out a bit. Her mom has been dead for years. Why does she keep asking this?

A: It is really common for a person with dementia to revert back to earlier memories. One of the saddest occasions I have had experience with is when I had a new resident with Alzheimer's move into my home. In the first few days she was really distraught. At one point she sat down at the kitchen table and cried, "I want my mommy!" My heart just broke.
It does not help the person with Alzheimer's or Dementia to correct them, by telling them that their loved one has been dead for years. Since they don't understand it, it may even make matters worse.

Your mother may be missing your grandmother. And since this feeling is very real to her you should validate those feelings and try to redirect those feelings into something she would enjoy, or something that would help her to feel less anxious. Get out the photo albums and look through them, while talking about Grandma. This may help your mom deal with the feeling of missing your grandma. Talk about the good things grandma did. It may not only help your mom feel less anxious, but may help her be in a much better place.

It does not help the person with Alzheimer's or Dementia to correct them, by telling them that their loved one is dead. Since they don't really understand it may even make matters worse.

If this behavior continues and becomes a repetitive problem, you may wish to use another method of dealing with this.

Here is a portion of a post on our forum for Alzheimer's and Dementia. It may help you.

One of the hardest things about caring for someone who has memory problems is the repetitive talking, questioning, etc. Some days that made me go crazy. Keep in mind it was 5 people, whom I did love so much that it hurt! When the repetitive questioning got bad I would just have to walk out of the room sometimes, and take a deep breath-consider the source-and walk right back in to the same questions.

One of the ways I was taught to deal with this problem was to enter into the Alzheimer’s/dementia residents reality. This does work! You may want to give it a try. You will wear yourself out answering questions over and over.

When the person you are caring for starts a behavior that you would rather not have repeated, such as asking the same questions over and over again, answer it the first time, and then if it happens again, just try to ignore the question and focus on something else.

Here are the principles involved in this repetitive questioning.
1) People are creatures of habit- if you answer those questions over and over again; you are re-enforcing the behavior. (Keep in mind some of this cannot be helped!)

2) Nobody likes negative reinforcement- not acknowledging the behavior and moving onto something else, might help her focus on something more positive.
I wish you the best of luck~ Dutchy

I won't put my mom in a nursing home!

Q: My mothers' caregiver called and said that mom needed to move to a nursing home. Circumstances have changed and my mom can't pay what she used to. I think that this is what the whole issue is really about. I don't think my mom's care has changed that much, but I don't want her to be put in a nursing home. What do I do?

A: Unfortunately this situation presents itself all too often. The first thing you should do is get an independent evaluation from a qualified Registered Nurse. Or speak to your mothers’ doctor to see whether or not he/she believes your mother should receive care in a nursing home.

The next step is to contact a local placement service. In most cities they offer their services to families at no charge. They do not work for a particular facility and after seeing the nurse's assessment they can point you in the right direction. Placement services help families’ sort through the issues much like the ones you are dealing with. They know the care community, and will be able to locate a home for you in a timely manner.

I can point you in the right direction- if I knew what state and town you lived in.
Just send me an e-mail... director@mycarelink.net

Hang in there!

Feeling Lonely

Q: I hate Alzheimer's disease, not only has it robbed me of my husband, but it has taken my life too! I feel like all of my friends have dissapeared. I am lonely, and that makes me feel guilty. Help!

A: What you are describing is very typical for caregivers. No one seems to understand! Your world seems to get smaller and smaller as you care for your loved one.

In order for you to continue caring for your husband you need to get some rest and take care of yourself, and more importantly reach out to others. I know, I know easier said than done.

There are many options for you. The key is to pick something and do it.

Do something for yourself. It is very easy to give all of your attention to the person whom you are providing care for and neglect your needs.

1. Get a manicure
2. Go see a movie
3. Go for a walk alone
4. Try to take a nap, when your loved one is sleeping. Even though it takes up time you have to get other things done.
5. Buy yourself a magazine
6. Take a bubble bath
7. Go to a spa

If you are lonely you should avoid isolating yourself. Perhaps your friends have left because they didn't know what to do to help, simply because you didn't ask them. If you feel uncomfortable asking for support start with small things and work up to bigger ones.

1. Try inviting a friend to coffee or tea
2. Ask a friend to stay for a hour while you take a bath, read a magazine, or go for a walk alone.
3. Call a local senior daycare program and arrange for your loved one to go there once a week. There are programs available in almost every city.
4. Contact a local Alzheimer's support group in your area. These people do know what you are going through.

If you are truly burnt out and at the end of your rope, you should check into long term care for your husband. If you cannot continue to give him quality care, or if your health is deteriorating you may need to look at some alternatives.

The Dryer Ate Your Underwear

Q: My mom is in the early stages of dementia and she is also incontinent we have tried to get her to stop wearing her underpants and have her start wearing pull-up diapers, she throws the Depends out the door and puts her underpants on. Of coarse we have a lot of laundry! How should I handle this?

A: This one should be fairly easy to solve. You have a few options actually! And hopefully you won't have to try them all!

First, you should take all of the regular underwear away, and replace them with the Depends. That way there is no other option. Hopefully in a few days she will adjust to the change and not even notice the difference.

If that doesn't work you may have to resort to under-handed, underwear tactics.

Sometimes with dementia you have to be a little bit dishonest. Somehow to me it never felt right telling little old ladies, little white lies. But, perhaps you could look at it like you are just stretching things a bit, or since we are Irish, it is just blarney!

One of the only ways to effectively deal with those who have dementia or alzheimer's is to enter into their reality. In your moms' mind, she doesn't have a problem and doesn't need them. In our reality we are smelling the urine, finding wet clothes, the furniture might be getting soiled etc. So here are a few one liners that might help you.

1. Mom we sent the underwear to the dry cleaners, they won't be back until next Monday.
2. Sorry, mom, they had to keep them another week.
3. I'm going to have to call and complain, because it has taken them so long.
4. The ladies' department at JC Penney, told me that they don't make that kind of underwear anymore mom. They only sell this kind.
5. Mom, you are hip! It's what all the chic's your age are wearing!
6. Mom the washing machine is broken, can you just wear these until we get it fixed.
7. Mom, the dryer ate your underwear.
8. What underwear?

Get a little creative!

Mom won't participate!

Q: Six months ago we placed my mother in an assisted living facility. She gets along fairly well, but we thought she would get involved with all of the activities. Instead she complains that she is very lonely, and won't participate. Do you have any suggestions?

A: There may be a number of reasons your mother doesn't participate in the actives offered.

You may want to step back a bit and assess your mother’s situation. Ask yourself a few of these questions
1. What kind of activities has my mother always enjoyed doing?
2. Does my mother enjoy social gatherings now?
3. Does my mother enjoy a one on one visit?
4. Are there health factors present now that keep her from enjoying group activities?
5. Before my mother needed assistance with activities of daily living was she a homebody or a social butterfly?

When determining what kind of facility your loved is best suited for those 5 questions should be asked. Often times, we as family members think that all sorts of activities would be good for our lonely senior. But, if group activities have not been a part of their lifestyle, it may be hard for them to just jump in a do the activities.

Your mom may just be a slow starter. One thing you might try is scheduling time to go in and participate in a few activities with your mom. This might help her feel more comfortable. If this is the case she will soon be attending activities on her own.

If however she still wishes to remain in her room, and still complains that she is lonely, you may wish to consider further investigation. Perhaps consulting with a neutral, long term care advisor would be beneficial. I would suggest speaking with someone who is not interested in keeping your mom in their facility at all costs.

While these suggestions are not exhaustive, they will give you a place to begin.

More About DNR!

Q: What exactly is DNR?

A: DNR stands for "do not resuscitate." In other words do not preform CPR

DNR is a doctor’s order regarding your wishes concerning CPR.

What is CPR? CPR stands for cardiopulmonary resuscitation. It's a rescue and basic life-support technique for someone whose heart or breathing has stopped.

A person who does not wish to have CPR should have a DNR signed by their physician.

A few examples of someone who may wish to have a signed DNR are those with chronic debilitating diseases, terminally ill, and frail elderly.

If you have a DNR you need to let your family members, and caregivers, know. You make keep you documentation taped to the back of your bedroom door if you are terminally ill and death is imminent. (Some may find that a bit depressing!) If you have a file for medical records, this is also a good place to put your DNR paperwork. Some people will choose to buy a bracelet, or put a card in their wallet to let others know.

In the event you should stop breathing and wish to have CPR preformed you need to do nothing. Emergency personel and other health care providers must provide CPR whenever it is medically appropriate.

Call 911!

Q: What information should I have available if I have to call 911?

A: If we all take the Boy Scout motto: be prepared, we would have the following on our refrigerator. It is not a good time to gather this information while the EMT's or paramedics are at your home for an emergency!

1. A copy of your advance directives, or a DNR signed by your doctor. Do you wish to have CPR preformed if you should stop breathing? If you don't have a DNR, and you don't want CPR, get an DNR signed by your doctor. http://mycarelink.net/resource_material.php (if you need to obtain the legal documents for advanced directives, DNR or power of attorney-just click the legal services button)

2. First name, middle initial and last name
3. Date of birth
4. Social Security number
5. Doctor’s name and phone number
6. A current list of medications. (Update this whenever there is a change)
7. List any allergies
8. Contact information for a close relative or friend
9. Preferred hospital
10. Insurance information or Medicare Medicaid information

It is a good idea have another copy of this information to take to the hospital, sometimes information gets lost in the shuffle.

When caring for the elderly, I have always made it my policy to be safe rather than sorry. If you are unsure....call 911. You make the initial call, the professionals will make the judgment call.

To find out more about CPR-http://depts.washington.edu/learncpr/quickcpr.html