9 tips to deal with Alzheimer’s disease ambiguous loss
Researcher Pauline Boss coined the term ‘ambiguous loss’ in 1977 and defined it as a type of loss that offers no closure and leaves the person with more questions than answers, thus hindering the grieving process. There are two kinds of ambiguous loss; physical and psychological. Physical ambiguous loss is the type that Penelope and Telemachus must have experienced during Ulysses’s 20 year absence from home, during which he was thought to be dead but there was always the remotest chance that he might come back. In that case, the person is not there physically but is still remembered psychologically by those left behind. Conversely, psychological ambiguous loss what people who care for loved ones with Alzheimer’s disease may experience. The person remains there in the flesh but their minds are going or have already been long gone. The following tips may help caregivers cope with psychological ambiguous loss.
- Identify the problem. You may have been experiencing ambiguous loss without even knowing it. Now you can chalk much of the stress and heartache of caregiving to this issue.
- Shades of gray instead of black and white. In other words, think in terms of both/and instead of either/or. For example, do not see your loved one as either present or absent but as both present and absent. This involves reconciling two seemingly oxymoronic ideas with each other, but unlike the law of contradiction in which a thing cannot be and not be simultaneously, a person with Alzheimer’s disease can be and not be at the same time. That is, they have psychologically ceased to be but they exist physically. They are still a living thing that has needs such as food, exercise, rest, etc. Moreover, thinking both/and as opposed to either/or allows you to recognize that you have needs to and that you have to take care of yourself as well.
- Counter ambiguity with predictability. Caregivers need dependable, reliable, and trustworthy assistance. You need people and services that you know you can predictably count on – like good ol’ Charlie Brown. Look for a local Caregiver Resource Center and find out whether it offers help and social support, spiritual support, recreation and respite, information, and so on and so forth. Additionally, enlist friends and family to lend you a helping hand.
- Family: Roles. Speaking of family, your role as a caregiver may phase out your previous family role as a son, daughter, spouse, or child. Though you may feel more like a parent than a child, or that your husband or wife seems like a stranger, the both/and way of thinking enables you to realize that you can fit several different roles. However, you also need to ask yourself these questions: are you the only one changing roles? Are your siblings willing to help you or are they going about their lives as usual? Did you nominate yourself as caregiver or it was a foregone conclusion that you would assume that role?
- Family: Rules. For instance, it may be a tacit family rule that women are the designated caregivers. If so, why are males exempted from this responsibility? Do not hesitate to challenge and change such rules. Though there may be a primary caregiver, the fact is that Alzheimer’s disease affects the whole family and everyone, including children and teenagers, should help accordingly to their means and abilities. Now, if your biological family is of no help, consider a surrogate family composed of friends and/or other caregivers that you can connect with by means of a support group.
- Celebrate good times, come on! (Let's celebrate). As Michael Scott learned in The Office, you can’t – and shouldn’t – cancel a holiday, or birthday, or religious festivity. You should downscale it, though. It is widely known that people with Alzheimer’s disease do not cope well with large crowds, but a small group of familiar faces – though they may be unfamiliar to the patient – can make your loved one feel, well, loved. Moreover, a celebration could be just the thing you lift your spirits, and recharge your life strength.
- Do not act on negative feelings. Anger, guilt, frustration, and other negative feelings are completely normal and not at all unexpected. You should by no means ever suppress them. On the contrary, discuss them with a professional healthcare provider, with another caregiver, or with a relative or a friend. At the very least write a diary or a blog. Whatever you do, do not bottle them up deep down inside lest they overfill you and spill over in the form of violence and abuse toward your loved one.
- Episode IV: A New Hope. In order to survive the stress of caregiving you need something to look forward to. It doesn’t have to be anything earth-shattering; it could be a hobby, an outing, a book, a TV show, a small vacation, a trip, socializing. Anything really that has a beginning, a middle, and an ending can help you offset the ambiguity of Alzheimer’s.
Take care of yourself. See a doctor if you’re feeling depressed, tired, or hopeless, if you’re abusing substances, if you feel like harming yourself or others, or if you find you’re letting yourself go in general.