Deciding When It’s Time, Letting Go of Guilt, Downsizing
Dementia-related diseases can be exhausting, not only for the person with the disease, but also for their loved ones. As they slowly lose their ability to live independently the decision that it is time for them to move to a more supported living environment needs to be made. And, after that decision is made there is the move to consider. When things get complicated and emotional, sometimes it is best to break things down into manageable tasks. Let’s try it.
Step One: Making the Decision it’s Time to Move
In their book, The Alzheimer’s Action Plan, P. Murali Doraiswamy, M.D. and Lisa P. Gwyther, M.S.W., explain that deciding to move your loved one to a more supportive environment can bring up conflicting feelings. You may feel guilty, but also relieved; you’re worried about the quality of the care they will receive, but dread the expense that may come with the highest quality of care; you feel you haven’t lived up to your commitment to keep them home, but know you’ve tried your best. Doraiswamy and Gwyther list the following reasons that it may be time for a move:
- Your health is failing.
- She needs more care than you can provide.
- He won’t leave you alone.
- Neither of you are sleeping at night.
- She is becoming aggressive, and medication and behavioral interventions aren’t helping.
- He is becoming less mobile.
- She is falling often and you must call for help to get her up.
- He is aggressively resisting all attempts at care.
- You are exhausted.
- You have no other sources for help.
- You want your life back.
In an article on Caring.com by Madeline Vann, she suggests these additional reasons that your loved one with dementia is no longer safe at home:
- They are missing medication doses or taking too much medication.
- They are no longer eating regularly and are losing or gaining unusual amounts of weight.
- They can no longer prepare food safely.
- They have become physically aggressive to you or others.
- They are wandering or forgetting where they are both in and out of the home.
- They are practicing unsafe behaviors such as leaving burners on if they try to cook.
- You suspect that they are being harmed in some way by a caregiver.
- They are getting bored and need more social, mental, and physical stimulation.
The earlier that you plan for the move, the better off both you and your loved one will be. If you wait until there is an emergency, they may not have a choice in where they end up. The decision has been made, you’ve done your homework, and found the community that best suits your loved one’s needs. The next step is just as important.
Step Two: Let Go of the Guilt
Making the decision to move your loved one into a supported community is not a failure on your part. Alzheimer’s and other dementias are progressive diseases and you are not responsible for your loved one’s decline. Rather than thinking about what you are not doing, think about what you are doing. It has been proven that when a person is in the right environment, they are not only safe, but they actually thrive. Even a person who was not particularly social in the past may surprise you and become quite social. It will not help them for you to express your guilt or sadness in front of them. Jytte Lokvig, author of, Alzheimer’s A to Z: A Quick-Reference Guide, says, “Keep your tone joyful, as hard as that sounds and bury whatever guilt feelings you may have.” When making up little “fiblets” about why they are moving, such as telling them it is temporary or that they will only be there while their house is being painted, she adds, “It may be hard for you to use ‘loving lies,’ but keep in mind that telling your loved one the truth would be unnecessarily hurtful.”
Step Three: Downsizing
It would be too confusing for a person with dementia to be asked what they would like to take with them or give away when moving to a new home. Many people with dementia understandably become hoarders. They are experiencing such a sense of loss that the idea of the items in front of them disappearing is just too much. It will be up to the person helping them to make the determination on what items will go and then quietly getting rid of the rest.
At a minimum they will need:
- Clothing (keep the items that are simple, comfortable, and washable)
- Laundry basket/hamper
- Toiletries (some facilities supply soap and shampoo, however, if your loved one has a favorite brand or scent, it would be helpful to have them on hand)
- All eyeglasses and hearing aids
- A clock (preferably with large numbers and the date)
- Clothes hangers • Curtains
- Their favorite chair
- Other furniture depending on how much room is available
- Family photos and/or artwork for the walls
- Personal items such as books, knick-knacks, etc., that will help them feel at home
- Personal medical devices (i.e, Walker, Wheelchair, C-Pap, etc.)
Depending on what the facility has available they may also need to bring:
- Their bed
- Shower curtain
It is best if your loved one isn’t involved in the packing up and unpacking. It can be very distressing to see your things being taken by other people if you do not understand where they are going or if you’ll ever see them again. The best-case scenario is to have someone keep the person occupied while things are packed, taken to the new community, and the room is completely set-up, including pictures on the walls. Make the room as cozy and inviting as possible before introducing your loved one to the room where “they’ll be staying for a little while” (make sure the staff at the new community know what the scenario is so that they can corroborate the story). Most communities can help by either keeping your loved one busy and/or helping to set-up the room. This is particularly true if your loved one is moving into a memory care facility where the experts truly understand dementia behaviors.
Now that your loved one is safely in their new community, you’ll have time to go through and take care of the rest of the items. Consider breaking items into groups such as, “Things to take,” “Things to give away to family and friends,” “Things to donate to charity,” and “Things to throw away.” If you do not have time, live out of state, or simply can not bear to deal with getting rid of your loved one’s treasures, there are people who can help. The National Association of Senior Move Managers provides listings of certified Senior Move Managers who can help you with every aspect of the transition: https://www.nasmm.org/index.cfm