Caregiving for Someone with Dementia

Greetings.  I hope it's been a wonderful week for you.  Things have been pretty busy on this end but good.  Today I want to talk about what it means to be a caregiver to someone with dementia.  On the next blog I'll share direct experiences.

Being a caregiver to someone with dementia is one of the most challenging things you will ever do.  It can also be one of the most rewarding while being simultaneously heartbreaking.  You watch while your loved one slowly loses who they are.  Your husband, wife, sister, brother, mother, or father are still there but no longer have the ability to fill the role in your life they have played for many years.

Each person experiences something slightly different although there is a lot of commonality.  What is common is that the individual with dementia develops agitation and frequently becomes depressed and disoriented.  They may not know where they are and eventually they will not know who you are.

Incontinence is common--sometimes because they forget they need to go to the bathroom and sometimes because they don't understand what the feeling of urinary or bowel pressure means. I'm sure there are other reasons as well but these are what I've experienced.

Sundowning is prevalent and this causes agitation and disorientation.  I've known some people to use full spectrum light bathing and they have said that this helps.

Simple tasks become increasingly difficult and the caregiver will need to assist with everything from dressing and bathing to cooking and eventually even feeding their loved one.

As the individual with dementia declines the stress on the caregiver increases as they take on more and more personal management of the loved one.  What is also very common if the husband or wife is the caregiver is that they will feel it is their job to be there 100% of the time for their loved one and their stress steadily rises. 

When people come to our support group we frequently tell them that it is critical for the caregiver to take care of the caregiver. They spend so much time as a caregiver that they forget to take care of themselves.  In order for for the caregiver to be a true support they must take care of their own needs and this includes general respite, rest, adult time with friends, and treating themselves regularly to something special such as a massage, manicure, or movie.  Some caregivers will feel that this is selfish.  It is not selfish and giving yourself a break is critical.  When we talk about respite care, this is all about the caregiver having a respite from the 24-hour stress of living with this condition.  Some ways you can give yourself respite include:

1. Hiring a caregiver to come over a few hours a week so you can go out.
2. Sending your loved one to an Adult Day Program like AltaGolden's.
3. Sending your loved one for a few days to a residential facility that offers short term respite. 

 Respite is a critical part of being a caregiver.  It's one of the reason that we will have a minimum of two caregiver assigned to a client with dementia.  Even professional caregivers get burned out when working full time with a dementia client.

So, what are some of the tips and tricks.  First, be non-resistant.  It is very common for someone with dementia to make an assertion about something that is not logical or not factual or they will want to do something that is not sensible or safe.  Our natural reaction is to try to convince them that it is a bad idea and they need to do something different.  You will very quickly find that this won't work.  You will hit a brick wall as your loved one digs their heels in. 

What do you do?  Validate and redirect.  Validate their feelings and redirect their attention to another topic.  The more you try to force or convince the more resistance you will encounter and the more agitated both you and your loved one will become.  If you validate their feelings and then direct their attention to another topic you will have an easier time of things.

Another trick I have used is to ascertain how long the individual will remember a conversation and, if they are resistant to something I will wait a few minutes and then try something else.  We had a client that wanted to move her mother up north to a memory care community closer to home.  She called me up to discuss how I felt she should tell her mother about the change.  We discussed several options but I also told her that her mother's loop was about 5 minutes so if one approach didn't work she could just wait 5 minutes and try another.  When she found the one that created the least amount of anxiety she could stick with that approach each time they need to discuss the move.

The "loop" I just referenced is common.  Sometimes it is simply the length of time the individual can retain information.  Sometimes there is an actual repetitive looping of a story.  Several years ago we had a client who would get onto a negative story and then loop that story again and again to the exclusion of any other conversation.  Every time he got onto a negative story and then started looping it we immediately changed the subject.  His short term memory was such that he didn't even realize that we had changed the subject.  After about a month we got feedback from the man's next door neighbor that he was able to hold a conversation with the man for the first time in two years.  We broke the looping pattern. The son said his relationship with his Dad had improved for similar reasons.

Over the next few days I'll share more tips, discuss safety issues, and talk about activities. 

If you are enjoying these blogs please leave your comments and/or questions and "follow" the blog.  You may also visit us on Facebook, LinkedIn, and Twitter.  Just about every day I tweet activities from our Day Program.  You may also visit our website for more information.

If you are interested in the support group it is the second Wednesday of the month from 5-7pm at the Memory Center.  The group is meeting this coming Wednesday, it is free to all, and no reservation is needed although we do appreciate a call to let us know you are coming.  We serve coffee, tea, and snacks. Call 858-779-9254 for more information or visit us online at www.altagolden.com.

Take care and have a great weekend!  Laura

Living with Alzheimer's Disease

If you have been reading my posts you are aware that AltaGolden works quite a bit with people with Alzheimer's and other forms of dementia.  Over the next few posts I would like to share with you information about dementia, what it is like to experience this condition, what the family and caregivers live with, techniques for working with someone with dementia, and what is happening in dementia research.  Much of the information that I will share is based on my experience within an agency that works daily with dementia--both with in-home clients and at the Adult Day Program.

Today's topic is about what it is like to live with dementia.

One of the things that I have experienced is that dementia tends to magnify base personality characteristics.  If someone is stubborn and intractable this behavior can become worse.  If they are sweet and loving this can also be magnified.

We had a client in the Day Program a couple of years ago who was very sweet and used to tell everyone she met that she loved them and give them a kiss on the cheek.  It was a delight to see her every day because we were guaranteed to get a smile, a kiss, and a kind word.  At one point her husband asked me to try to get her to stop telling everyone she loved them because there were no boundaries as to where she would share this sentiment.  I didn't have the heart to curb her kindness.

Disorientation and anxiety are very common.  Even if the person is not told they have dementia, they do recognize on some level that things are not as they were and this can create agitation.  They also may not recognize their own home environment. They are not able to track their own schedule and activities, orient to the time of day, or even know if the fading light is related to morning or evening. You may have heard the term "sundowning".  As the daylight fades, confusion can set in and increase agitation.  It is not uncommon for us to have clients in the Day Program get fixated on the windows as the sun starts to go down--especially in winter when the sun sets at 4pm.  We end up having to close the blinds and face their chairs away from the windows to distract them and keep them involved in the activity at hand.

One of our Day Program clients has begun having episodes where he lives his life in past events and locations.  He may be at the AltaGolden Center or at his apartment but he thinks he is at a university or prior workplace.  We have another client who has become so comfortable at the Center that, when she leaves at the end of the day, she wants to lock the door to her "house" and doesn't understand why she is leaving.

What is very common is that basic daily tasks become very difficult to perform without one-on-one assistance.  Making a sandwich, doing the laundry, and cleaning the house become insurmountable without step-by-step guidance.  In the picture above, we took small balloons and wrapped them with yarn dipped in a glue made of flour and water.  The concept of taking this yarn and wrapping it around the balloon was very difficult and required a lot of guidance.  Everyone created a balloon although some of the balloons were collaborations between two clients or between a client and staff member.  In some cases we had to guide their hands over the balloon with the yarn.  Tomorrow I'll post a photo of the end result of their project--an Easter egg wreath made from their yarn eggs.

In all cases where we have supported in-home clients with dementia, the ability to prepare a simple meal or perform basic tasks becomes impossible because they can't remember the steps. The idea of taking two pieces of bread and adding meat, cheese, or condiments is incomprehensible.  Working a stove or microwave, preparing a meal, cleaning dishes, or self-administering medications become an impossibility.  Bathroom reminders are often needed--sometimes because the individual doesn't understand what that feeling of pressure in the bladder or bowel means. 

The caregivers, whether family or service-based, have a huge challenge in providing support.  In the beginning just a little help can go a long way.  Eventually 24-hour care is required.  In my next blog I'll continue the discussion with what the caregiver experiences and why it is so important to get a support system in place.

In the meantime, visit us at www.altagolden.com for more information and resources.

Take care and have a blessed rest of your day!  Laura Barish, AltaGolden