My Second Long Goodbye: Chapter 6
If you have been reading my blogs so far you will know that throughout them I have attempted to provide what I hope would be some useful tips both on behaviors and sources for those of you on the dementia journey. I would like to begin this blog and circle back to capture some of those tips and strategies here in one post so they are easier to find. Forgive me if I ramble some here and lack organization but I write these blogs without notes or any outline and allow myself the freedom to just let my writing flow much like our thoughts do when we pay attention to them.
When you first notice changes
So let’s begin with when you first start noticing changes in your loved ones behavior that have you thinking that maybe this is more than aging memory loss. What should you do? Initially you should contact your primary care physician and ask for an appointment to have your loved one checked for signs of mild cognitive impairment which is the first sign of dementia. If your doctor suspects dementia he should refer you to a neurologist for further testing. The sooner you start this process the better because as research continues more and more drugs and therapies are being developed to address this disease.
Determining what type of the hundreds of types of dementia you are confronting allows you to find the most appropriate drugs or therapies for your loved one. At this point there are no cures but there are things available to slow the progress in many cases. Also by knowing what you are facing you may be able to qualify for an ongoing study that will help you and your loved one deal with the disease.
Decisions after diagnosis
Once you have confirmed the presence of dementia there are several things you should begin doing.
First you should make sure that you or someone has the power of attorney both for health care and for finances. It is imperative this be done while your love one has the capacity to assent otherwise you may be forced to get a court involved which will greatly complicate your life.
Second you should discuss the findings with your loved one’s family members and close friends so that they can be prepared to interact appropriately in their encounters with your loved one. Dementia is an ever growing reality for many people in our society and there should be no stigma attached. It is no different that someone having any other disease so even though you might be hesitant to talk about this it is important that you do so.
As the disease progresses it may be that your loved one will demonstrate inappropriate behaviors when in social situations. The Alzheimer’s Association has printed cards like business cards that you can carry with you to show people which explain that they are dealing with someone with dementia. Having those cards makes it so you do not have to potentially embarrass anyone by vocalizing the problem.
Third you should begin to think about how you are going to deal with your loved one as the disease progresses. Trying to be the sole caregiver will be an monumental undertaking which you may or may not be equipped to do. (I was not!) The earlier you consider your options the better because the timeline for the progression of this disease in unknowable and won’t slow to allow you to breathe if you wait until the moment you need to act. The two areas you need to be considering is how you are going to provide care and how are you going to pay for it!
If you have long term care insurance you should be examining it now to see what it covers. Look at the fine print and if you are unsure of what it says find someone to help you understand exactly what it covers. Once you need to invoke it you need to know what it will and will not pay for. If you do not have any insurance then you will need to be thinking about how you will pay for whatever care option you decide is necessary.
In either scenario you might want to contact an agency in your area that can help you. In the Sacramento area Senior Care Solutions (916-965-5565) at 8910 Sunset Ave in Fair Oaks is a free nonprofit organization with decades of experience that you can call. Wherever you live check to see if a similar organization is available or call your county government to see if they have referrals.
In terms of what type of care your loved one requires and also which you can live with the options include you or someone else as the sole provider in your home, you or someone else with in home professional care, an assisted living facility or a memory care one. There are many agencies that provide in home care and there are hundreds of care homes from small six bed ones to large corporate ones housing varying numbers of residents. Again it is never too early to begin thinking about these options before the need for them arises. The people at Senior Care Solutions are very well equipped to help you navigate these options and will do so with compassion and professionalism for free if you contact them.
Support for the caregiver
It is critical as you walk this path that you take care of yourself. If you fail to do so you will not be able to take care of your loved one. So don’t try doing this alone! One source of assistance is the Alzheimer’s Association (Alz.org). They have many videos covering assorted topics that might help you navigate your journey and they have a 24 hour hotline (800-272-3900) staffed with professional people who stand ready to answer your questions. Again in the Sacramento area Del Oro Caregiver Resource Center(916-728-9333) 8421 Auburn Blvd #265 Citrus Heights is a nonprofit organization that provides free support services for caregivers. If your loved one is a veteran then contact your local veterans agency or nearby veteran’s hospital to access whatever benefits are available.
Finally in regards to taking care of yourself I recommend leaning on your friends and family for sure but most importantly I recommend joining an Alzheimer’s Support Group! Here you will find a group of what I refer to as extraordinary ordinary people who are on the same journey you are facing. They will be at various stages and they will give you unconditional support and love and valuable insights into how to navigate what lies ahead for you and your loved one.
The group I personally belong to meets Tuesday mornings at 10:30 until noon at the Alzheimer’s Aid Society of California 2641 Cottage Way Suite 5 and is open to anyone. This is a group that includes people with the disease as well as their caregivers with each group meeting in separate rooms which allows people to come without needing to find care for their loved one in order to attend.
Challenges along the way
This journey is going to involve many difficult decisions and encounters with your loved one. So here I would like to just give you a few strategies that might be helpful. Remember your loved one is experiencing mental decline so one thing you should remember when dealing with them is recalled by the acronym ARC which stands for never Argue, never try to Reason, and never Criticize them. Each of these behaviors only serves to escalate what can quickly become a very frustrating encounter for them. Rather try to deflect the conversation or use what is referred to as therapeutic lying where you simply make up something to ease the tension. Or you might try distracting them by telling them you need a hug or offering to have ice cream or some other treat.
One thing that is fairly common on this journey is that the time will come when you need to keep your loved one from driving. This is a huge issue for most people and one that can quickly escalate into anger and frustration. There will be other issues that will come up along the way that present similar circumstances where you are going to have to require a change in behavior that your loved one resists. One of the best strategies in these situations is to blame the doctor.
One last thing before I close. I recently had an unexpected incident occur which leads me to discuss this here. I was called early in the morning one day last week by one of my wife’s caregivers to inform me that my wife had fallen in the shower and cut her head and they had called 911 to take her to emergency to have it attended to. My first question was did they have someone that would go with her and when they answered no I momentarily panicked.
I was having flashbacks of when my mother-in-law fell and broke her hip when she was in a care home. That was the beginning of the end for her. After quickly regaining my composure I drove to the ER and spent 6 hours with my wife while she had three staples placed in her scalp to close the wound. Luckily scans showed no further injuries and I was able to return her to the home in the afternoon. I tell this story because it caused me to confront the reality that I had no back up plan had I been out of town.
I had no one else to step in and be with her. She would have been all alone and unable to make the decisions required for her care. Having power of attorney is necessary but it is not enough! You must have a backup plan in case you are not available or God forbid you die before your spouse. In my next blog I intend to discuss this further.
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