Elderly Parent taking care of Spouse

Dear NurseTina,

My 90-year-old Father is caring for my 87-year-old Mother who has Alzheimer’s, is chair bound and needs major assistance with all daily activities –and I am concerned. Mom has fallen in the past –only I am not supposed to know this—a neighbor told me and Dad confirmed it.

At the last doctor’s visit my Dad lost 7 pounds and we were told he has high blood pressure (hypertension) which he has never had and is now on medications. Dad never complains, but I know him and can tell he is very tired (and he did mention that she is up most nights). Dad no longer can drive and so I see him almost daily and bring in meals; he “wants to take care of her”.  I also noticed lots of frozen food in the freezer –Dad thought this would be a good idea and save me taking him out shopping.  The doctor took me aside after the visit and told me they might be better in a nursing home. I promised them we would try and stay at home –At what point do I step in and where do I start?  

You are a good daughter and situations such as this are not unusual—with an action plan you may be able to take positive steps to help your parents to remain at home. A few things come to mind from these facts that you have shared. First, let’s talk about your mother and her care needs. You use the words “major assistance with all daily activities”. I would presume this means meals, meal preparation, setting up for feeding, showering/bathing, toileting, dressing, undressing, laundry, and many others.  From this short letter, I can understand that your father would be exhausted and you would want to step in and offer more support than daily meals.

I have seen frail, older men lose up to 20 pounds from their caregiver “responsibilities.” I use this word because that is how I have heard some men from that generation verbalize (read: define) this caregiver role. However, they do not have to be the only or sole person with these important caregiver duties and tasks.  As a daughter who luckily lives nearby, you could offer many supports to your parents and your father who is the primary caregiver.

First, consider that your parents may need to be assessed by a qualified geriatric care manager. These are specialized nurses or social workers who are credentialed to work with this special older adult population. They work all over the United States and can be located by zip code. This local support is important since they have access to community resources and linkages that can match your family’s needs with services in the community. For example, let’s look at one problem that might be identified after the GCM’s holistic and comprehensive assessment.  This could be that your father is not able to sleep soundly for a night as he is always ready to listen for, and be awakened by, your mother needing assistance to the bathroom and otherwise awake.  You might offer to sleep at their home a few nights a week so he gets some uninterrupted sleep.  Next, check the labels and ingredients/salt content on all the frozen food you mentioned. This change in his dietary habits and your dad’s new high blood pressure may possible be connected? You might want to check his blood pressure when you take him out shopping. On the topic of “out shopping” – even an outing to the grocery store is a very good thing for the primary caregiver. Caregivers need a physical and psychic “break” from their worries and responsibilities. The topic of the importance of pleasure in both the patients’ and the caregivers’ lives will be addressed in a future column.

As important as doing more for your dad so he gets a break is, it is also important to empower yourself with information. In this case you can visit the Alzheimer’s Organization website where they have an assessment based on the changes and behaviors you see in your mother. Visit www.alzheimers.org  for caregiver resources and more. This web site is a part of the National Institute on Aging and lists many resources for caregivers and families. There is also a toll-free call-in phone number (1-800-438-4380) and you can sign up for e-information.  The Alzheimer’s Association can be accessed online at www.alz.org. They offer a section entitled “Seven Stages of Alzheimer’s” to see where you believe your mother is (and note that not all experience the same symptoms or progression). But this is a useful guideline for families I have worked with and – as important –it lets you know that you are not alone in this journey. The National Association of Professional Geriatric Care Managers can be accessed at www.caremanager.org

As a nurse and from working in the home care industry for many years, and being a caregiver myself, I have seen that the care that family caregivers provide has become more demanding and complex. As hospitals discharge patients earlier than in past years, this trend may only continue. Because of this and other factors, the chances of all of us being caregivers (or coordinating someone else’s care) will likely increase. I hope these columns help provide you with needed information and resources for those of you who are already caregivers and also for those of you who may became caregivers in the future. Readers can e-mail questions or topics they wish addressed to tina@dearnursetina.com