Tips On... Spousal Caregiving

by Edyth Ann Knox

More About Edyth Ann…

When the loved one who a person is caring for is one’s spouse, there is often a lot of misunderstanding about what the role of “caregiver” is and what it means. Children do not often have any idea or inkling of how it affects both parents, and the parents often have a hard time understanding their children and their role. Often these misunderstandings can cause great strain between parents and adult children.

1) Get papers and affairs out of the way: This seems to be a common-sense type of thing but it is one that is often put off until it is too late. If the spouse has Alzheimer’s Disease and can no longer sign for him/herself matters are dramatically more complex. It is important not to just get a will made and signed, but to take care of all the other paper work. Mortgages and all debts should be caught up. You should consult with an experienced elder lawyer about the disposition of assets while your spouse is still considered legally competent. Make sure that you have other legal documents such as durable Powers of Attorney filled out for both you and your spouse. Without a durable POA you may have to go get a guardianship later in order to speak for your spouse and protect your spouse’s rights.

2) Start planning a support system: We all tend to assume when the diagnoses is first made, we will have our friends and family to turn to for help and support. Later we become shocked, disappointed, and angry when our friends begin to slip away. Even family members can suddenly not be around to help. We also tend to think that we will not need much help as we will be able to care for the spouse with little assistance. It is important that we seek out our care options in our community that we can turn to when we need some time off or additional assistance. The Neighborhood Networks on ElderCare Online offers leads to various support groups.

3) Allow for everyone’s changing roles: One of the things that we find hard to deal with is how our roles seem to change. We often feel that our spouse is becoming our ward and is no longer our life partner, yet at the same time we need for them to still be our spouse. Our apparent role changes and our emotions are confusing and aggravating. In reality it is our spouse that is going through all the changes and these changes effect how we need to function within our role. Our roles are not the only ones that need accommodation to the new demands of Alzheimer’s Disease: Our children often find themselves struggling with the same conflicts and emotional pulls. They are still the children and still desire for the parents to be as they always were (and as a child of an affected parent I know this to be true). Yet we see the struggle of both our parents. No matter how old we children get this is scary and disturbing, we want to help and protect our parents, yet we often have trouble crossing that invisible line. It is important to remember our roles do not change but it is our function within the role that changes according to the changes of the one suffering.

4) Tell those who you love that you love them: You know this can be one of the more important steps we can take. It always seems to be one of the biggest regrets as time goes on as to whether or not we told those we care about how much we do love them. This is not just true of those of us caring for our spouse but for the suffering spouse as well. The earlier in the disease that we can express our feelings of love, the more meaningful these expressions will be. Letting others around us know that we care about them also helps to cement our relationship up a little more to survive the time of caring for our spouse. Plus it gives us less to regret later on.

5) Take time to smell the flowers: This is some advice given to me by a dear friend who is suffering from the early stages of Alzheimer’s Disease. She gave this advice to me saying it is something we all should do whether or not we are suffering from Alzheimer’s Disease or not. Life often seems so short because we rush through it. We do not take time to enjoy the simple pleasures that abound around us. When dealing with a spouse with Alzheimer’s Disease, things may change at any minute. The swing from a good moment to a nightmarish situation can (and often does) happen. Our loved ones also are more prone to react to our state of mind. Taking the time to enjoy the pleasures that are around us allows us to gain more peace in our role.

6) Where is my spouse? As the disease progresses the person in front of us seems to transform into an unknown person. We find ourselves looking for that glimmer of the one we married to reappear in some manner. On an intellectual level we know that person is our spouse, but they do not seem to resemble our spouse. The type of care we need to give our spouse makes that person seem even less like our spouse. The person is lost as a spouse, we grieve there loss, as we care and in many cases learn to love the new person that is in place of our spouse.

7) I miss the conversations: It is the conversations that one shared with their spouse that many miss the most. Those conversations that are sometimes about nothing, and sometimes peppered with those little phrases and pet names spouses often have for each other, conversations that sometimes last into the wee hours of the morning. It is in those conversations that we share our dreams, hopes, and beliefs as well as discuss the meaning of life and love. Though we may never be able to find a way to share these conversations or thoughts with others, journaling can help ease and fill the need of communicating these conversations at least in some manner.

8) Aloneness: The spousal caregiver experiences something more than mere loneliness. We experience “Aloneness.” Where we at one time had our spouse to be able to turn to, we have only ourselves. Our spouses are in some sense our assurance that we shall never be completely alone. Yet the disease even takes this from us. Many caregivers find different ways to deal or adapt to this aloneness, none of which anyone should ever pass judgment on. Some caregivers will seek out some form of companion ship. Many times it will be in a close friend, perhaps of the other sex, who with we can exchange some form of conversation, a meal, or other mutual interest. Some may even find a companion who becomes much more intimate. In each case the caring spouse is the only one who can say whether they are in the right or wrong. Those who know of the sheer aloneness that this disease creates knows deep within their being how complete it can be.

9) The emotional roller coaster ride: All of those caring for a loved one with Alzheimer’s Disease are subject to the emotional roller coaster ride. The ride however for the spousal caregiver is even wilder. Emotions run across the board. Guilt over feelings and thoughts that we experience can be devastating. It is important to remember that the feelings and thoughts you experience are like fecal matter, they happen. We have no control of those stray thoughts and our emotions. We only have control of the ones we react to and hold on to.

10) Till death do us part: This is the one line from the wedding ceremony that is often held on to and repeated through out the years of marriage. I myself have used this phrase to get through a spell of bad times where love was not the strongest emotion I felt towards my spouse. We often joked with each other using that line. I told my husband that if he ever wanted to leave me he had to do the honorable thing and die. He would as jokingly reply that it was my duty to be the one to die. However I have heard spouses quote this line as to the reason they care for a spouse at home even at the expense of their health and well being. I have heard the children and others use this very same line to shame the spousal caregiver into keeping their spouse with Alzheimer’s Disease home long beyond the time they knew they could care for them. This line is one of strong meaning but it's meaning has never ever been meant to keep the spouse home beyond the point of reason. Selecting other care options or even placing a spouse by no means breaks that promise.

More Tips by Edyth Ann:
   Tips on... Eating (Early and Middle Stage Dementia)

   Tips on... Being a Caregiver
   Tips on... Wandering
   Tips on... Sundowning
   Tips on... Bathing
   Tips on... Toileting

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