Dementia & Alzheimer's Series: #2

One of the on-going goals of this blog is to point to other sites and resources that we at Support For Home believe are useful for both professional and family caregivers.  One of those sites is SeniorsList. 

Not every article they publish is great, but a number of them are.  while you will find our business listed on the site, we do not necessarily think Internet sites are the best way to find home care agencies.  A local human whose business is to know the agencies in an area is a much better approach.

However, as I say, some of the articles are very good.  One that has just been published is "Caring for Someone with Alzheimer's," by Murphy Ortiz.  The author begins by saying something that, from our experience, we all need to let "sink in," and that is -

It's very easy to say "I'll never put Mom in a nursing home" when she's healthy. But if you're one of the many family caregivers of someone with Alzheimer's, that promise may not be easy to keep.

There are still many folks who hold to that promise, but it can be very tough, and there are some critical points we believe family caregivers need to remember.  One of the most important principles, in our experience, is that the family caregiver must be able to be selfish.

Sounds strange, right?  What we mean by that is that we see too many families where the primary caregiver (and secondary ones, too, sometimes) is absolutely physically, emotionally and psychologically exhausted, because she or he is not getting the respite that is vital to being able to go on.

When that respite is missing, provided either by other family or professional home care agencies, the chances of being able to keep that promise are significantly diminished.  It will be more expensive to bring in a home care agency to help than going it alone, but the chances of success, in keeping that promise, are tremendously higher.

As Murphy Ortiz writes,

Learn how to ask for help. You might be trying to do too much yourself. Caring for a loved one with Alzheimer's requires a great deal of patience and sacrifice, and one person can't do it alone. Don't feel guilty asking for help. You'll be doing your Mom more good having help on your side...  Maybe you can ask a friend or family member to sit with your Mom to give you a much needed break. You can also contact a home care agency that can provide someone to assist your Mom with her care. These caregivers can also engage your Mom and participate in enjoyable activities with her.

It is a noble promise, and it is possible to keep it, but it means being willing to ask for help.

Best wishes, Bert

A Family's Story

In the last two weeks, in addition to losing my own mother, two of our home care clients passed away.  The family of one client was gracious enough to share the story of their father, which we are delighted to publish, below.  I think you will see how extraordinary the client was and the family is. 

It has been a true privilege being part of the team helping their father stay at home.  Mark and Andria, we thank you so much:

Afer my mother died in January 2009, we realized Dad was no longer able to care for himself on a long term basis. He was already in the late stages of emphysema, and although he did everything he could in terms of exercise and medicine, he lacked the energy to prepare the hot and nutritious meals that his wife had fixed for him right up until her last few days, when pain from her lung cancer sent her to bed.
She died within two days of that time, as if she had no longer any reason to live when she couldn't care for him any longer.  The day of her death, we took Dad to the hospital with pneumonia, an event that happened with increasing frequency as his disease progressed. He spent the first night after her death in a hospital room, less than a kilometer from his house, the same hospital where he died in June of 2010.


We decided we would do all we could to make him comfortable at home. He didn't have many surviving friends and enjoyed staying in the house, reading and watching television. Life in a facility would have been a trial for him, and he was already too weak to take advantage of collective outings and other amenities of those living situations.


We practiced with my mother's recipes and cooked him much the same dishes she had prepared whenever we were there. We went out to local destinations at first, when his strength still permitted, since already driving more than a few minutes was too taxing.


Dad was able to prepare himself a simple breakfast, and walk out in the cool Davis mornings to collect the newspaper and do limited yard maintenance, until close to the end. He was not a gregarious man and enjoyed reading and reflecting by himself. He would never have been able to adapt to a collective living facility.


Initially my wife and I came to the house nearly every weekend to do shopping and prepare food that he could reheat during the week. Dad resisted having any in home care for several months, but as he continued to weaken we had people come to the home at first on an ad hoc, informal, basis, and then,for the last six months or so, on a regularly scheduled basis, twice a week. At first he was not comfortable with strangers in the home, but his opinion changed with time.


Dad enjoyed the periodic visits from neighbors, who often brought him cooked meals, and watched over him to make sure he would get to the hospital promptly if he again developed pneumonia.


As his oxygen needs increased, it became more and more difficult for him to drive or leave the house for any length of time. Trips to the library more and more had to wait until we could be there on weekends


He enjoyed the company of the people from Support For HOme In-Home Care and the volunteers that came just to socialize: a student from the University doing her service hours for graduation, and local retired people.  But the fact that he could set his own schedule, even for inreasingly limited activities, was important to him.


Dad also enjoyed talking with people he hired to work on landscaping as he became increasingly unable to do it himself. As long as he could, he watered and weeded the small garden he had maintained in the back yard for many years. This spring he had reached the point where he couldn't even walk out to be in the garden, but contented himself with watching out his small bathroon window, which overlooked it.


Dad was very adaptable and didn't seem frustrated with the narrowing scope of his life and his increasing dependence on others. He very much wanted to be in the home he lived in since 1971, and the familiar surroundings of neighbors and local venues such as the bird sanctuary.


He outlined and managed small projects around the house and chatted at length with the younger people, graduate students at UCD for the most part, about their lives. He liked to compare their situations with episodes in his own life from his student days in Berkeley.


It was interesting to him, since this was the first time in many years that he had contact outside his family with people of younger generations.  Many of their life experiences were new to him, involving non-English speaking communities, but he had a gift of empathy that enabled him to understand their feelings, and they seemed to appreciate the opportunity to get his opinion on their difficulties.  But, again, the fact that he was able to decide on when and how long to carry on these contacts was very important to him.


Most of his friends and all the family members of his generation had pre-deceased him, and the younger family lived far away, so during the work week, when we family members couldn't often come to Davis, he was often lonely, although he was careful never to complain about this.  He accepted it as normal for the stage of life he was in.  He read several newspapers and all the books he could carry home from the libarary, did crossword puzzles, and welcomed visits from caregivers during the work week.


With time he came to consider the people who came to the house as friends, rather than just hired help, and looked forward to their arrival.  He tried not to burden them with too many tasks and spent as much time as possible playing cards or chatting with them.  It made staying in his own home much more enjoyable for him during the 18 months he lived after his wife's death.


Even at the end, when he only could sit and watch the squirrels and birds outside on his patio, and read before falling asleep, he was still pretty content.  He had the peace of a quiet, familiar neighborhood.  He was surrounded by all the memories of his 39 years there, and a house whose every corner had a history for him.


If he had lived longer, he would have had to share nearly all his time with caregivers in the house, but it would have been far better for him and for us than placing him in a noisy facility with complete strangers for the last few months of his life.


Fortunately, really, he was spared having to live in a hospital type of setting in the home since he died in the hospital.  His last memories of his home were of a place little changed from when he lived there with his wife and family.


I think he was totally content with his situation right up until the end.

Every Day is an Interview

At Support For Home In-Home Care, all of our Home Care Aides are our employees.  We are not a referral agency for some very simple reasons.  As the employer of record, we perform the background checks, determine who is worthy of being a member of our extended family, cover them with liability insurance, our dishonesty bond, workers comp, etc.  That means our home care clients and their families are protected from unemployment claims, injury claims, and so forth.

To be the employer of record, we actually have to assign our Home Care Aides to our clients.  Every once in a while, a client or his / her family will ask to interview the Home Care Aide, first.  When this happens, we explain two things:

• If the client or family "interviews" the potential caregiver, they are indicating to the State that they may be the actual employer, not Support For Home.  That is dangerous for the client or family, because it can result in government burdens and expectations that the client is not prepared for, at all.  We are the employer of record to protect against that.  The client hires and / or fires us, Support For Home, not an individual employee.
• Every day that a Support For Home employee works for a client is an interview, in reality.  We tell our clients several things.  One is that we never want the client to "try to make it work" with a Home Care Aide.  The client and the caregiver are either a good match or they are not.  If they are not, we put a new Home Care Aide in place.  The second message is that things change.  A caregiver who is great for you right now may not be in six months, for whatever reason.  Every day is an interview, at which Support For Home and our employees must excel.

If you or a loved one needs home care, make sure you work with an agency that is the employer or record.  You may pay a bit more per hour, but you avoid a ton of potential liability.

And Now For Something Entirely Different

So, this is something that has been brewing in my mind for quite a while.  I did not really intend to blog on the topic, but a comment by a new client actually convinced me that I should.

Just to be clear, this is not about how our senior care, in-home care agency, Support For Home, is better than others.  It is about the fact that we would love to see other agencies understand the sensitivities of seniors and decide to stop this practice.

OK, so what in the world am I talking about?  The issue is "branded" cars that scream the names of homecare agencies. 

If I'm a realtor or sell insurance, no issue with the decals or paint jobs that tell the world what I'm doing.  However, if my passion is, however -- as ours is -- to enable seniors to continue to live at home, I'm not going to do that.  Many seniors have enough issues accepting that they need help.  It is an emotionally difficult decision for them.  If they want to share the fact that they are receiving care with their neighbors, great.  We are not going to advertise that fact by the cars our administrative staff or Home Care Aides drive.

For us, it is just a matter of being a little bit more sensitive.  Do you agree or disagree?  We would love to have your comments.

Best wishes, Bert