A dementia diagnosis is scary — for you and your spouse. But how do you cope when your loved one starts following you everywhere?
Doing everything together might seem like the type of relationship that most people strive for. However, they wouldn't imagine that you're literally doing every single little thing together.
When your spouse is diagnosed with dementia, both of your lives are forever changed.
Your loved one is living in a constant state of fear — and you are their security blanket. They don't want to let you out of their sight. Your personal space is violated continuously. You have no room to do anything on your own, and your patience is wearing thin.
You don't have to wait until you snap to seek a solution. Keep reading, and we'll show you what you can do to save your sanity and still support your spouse.
How to Cope with a Scared Spouse
Learning your spouse has dementia is just the start. You have to fully understand their diagnosis before you can learn how to help them.
The type of dementia they have and the cause of it will determine the treatment options available to them as well as their prognosis. This information will help you learn how to help them — and yourself — cope with daily life better.
What is Dementia?
Dementia is a condition in which nerve cells in the brain are damaged or they die. The loss of some of these cells is a normal part of aging, but when it occurs too rapidly and affects your ability to perform ADLs (activities of daily living), it is classified as dementia.
Types of Dementia
- Alzheimer’s Disease - The leading cause of dementia. Plaques and tangles in the brain cause damage to the nerve cells.
- Frontotemporal Dementia - The nerve cells in the frontal and temporal lobe are affected. These areas of the brain are responsible for personality, behavior, and language.
- Lewy Body Dementia - Balloon-like clumps of protein called Lewy Bodies are found in the brain. It is one of the more common types of progressive dementia.
- Vascular Dementia - The second most common type of dementia. The blood vessels that supply your brain are damaged. It can cause strokes or other damage to the brain.
- Mixed Dementia - It’s common to have more than one type of dementia at the same time. When this happens, it is called mixed dementia.
Recommended Reading: Ask the Expert - Different Dementia Types
Causes of Dementia
Other disorders are linked to the cause of dementia. These include Huntington’s disease, traumatic brain injury, Creutzfeldt-Jakob disease, and Parkinson's disease.
Other types of dementia can be treatable. If any of the factors below caused your dementia, it is possible that it could be reversed with proper treatment.
Other Causes of Dementia
- Infections and Immune Disorders
- Metabolic Problems and Endocrine Abnormalities
- Nutritional Deficiencies
- Medication Side Effects
- Subdural Hematomas
- Brain Tumors
- Normal-Pressure Hydrocephalus
Recommended Reading: The Five Most Common Questions About Dementia
Symptoms of Dementia
Dementia comes with several symptoms that can affect your spouse’s ability to perform ADLs (activities of daily living).
Some of the symptoms include:
- Trouble remembering recent events.
- Difficulty concentrating, planning, and organizing.
- Problems communicating. Your spouse might say a word different from the one they meant to say or have a hard time remembering what word they are thinking of.
- They might have issues judging distances or seeing 3D objects.
- Losing track of the day or date.
- Forgetting where they are.
- Forgetting loved ones.
- Changes in their mood like increased anxiety, irritability, confusion, and depression.
- Forgetting what numbers mean and what to do with them when managing finances or paying at checkout.
- Constantly misplacing things like their wallet or keys.
- Lack of interest in daily life and activities or hobbies that they used to enjoy.
How is Dementia Diagnosed?
There isn’t one test that doctors use to diagnose dementia. Your medical history will be carefully considered and your doctor will conduct a physical exam and neurological evaluation.
The neurological evaluation will test your thinking skills, memory, orientation, reasoning and judgment, language skills, and attention. Laboratory tests or brain scans will be ordered and you could be recommended to a neurologist or gero-psychologist.
What is Dementia Shadowing?
When your spouse is diagnosed with dementia, many things will change for them. Fear will become a permanent part of their life. Fear of forgetting you and other loved ones, forgetting cherished memories, where they are, getting lost, or even being afraid they will get hurt.
You are their partner and their companion — they trust you completely.
They are going to latch onto you like a security blanket. With you, they are safe and protected. They can relax a little. You are there to help them if something happens.
As frustrating and suffocating as this can feel for you, keep in mind your spouse is not following you around for an ulterior motive. They are not trying to control you or pester you. Be empathetic and try to see things from their perspective.
Typical Behaviors of Dementia Shadowing
- Your spouse follows you around everywhere you go — at home and in public.
- He or she becomes agitated or anxious when you are out of sight and try to leave the room or close a door.
- They regularly ask you what you are doing or where you are going.
- You can’t take a shower or use the bathroom without being interrupted.
How Can I Help My Spouse?
Some days might feel hopeless. You can’t even shower or use the bathroom without being interrupted or agitating your spouse.
You are frustrated because you simply want to be allowed breathing room and time for yourself.
When you are a primary caregiver that can feel impossible to do. You don’t want to leave them, and you aren’t sure how to occupy them and shift their focus off of you.
There are some activities you can try and things you can do to help your husband or wife feel safer without your presence. The next time you want to pee in peace or run an errand alone, try out some of the suggestions below.
Reassure Your Spouse
Remind them several times throughout the day that they are safe, everything is ok, and that you love them.
Establish a Routine
A routine will provide the structure they need to feel secure. Knowing what to expect will reduce their anxiety and agitation.
Don’t Change The House
Your spouse will remember the house as it was and will have trouble retaining new memories. Rearranging furniture or other items could confuse them and increase their anxiety. It’s likely to make them shadow you even more if you do.
Use Written Notes
If you have to leave the house, write a note to your spouse. Let them know what time you are leaving and what time you will be back. Make sure they have a clock that is easy to read somewhere in plain sight.
Give Them a Task
Giving them an easy task they can focus on can help take their focus off of you. Let them fold laundry or work on a puzzle.
Find Something Familiar
As mentioned above, your spouse will have trouble making new memories. Familiar photos, music, or movies can be soothing and reassuring for them. Consider making a memory book or a recording of your voice if they find it comforting. Memory books with photos of loved ones should be clearly marked with names and dates to help them remember.
Provide Snacks or Gum
Giving your spouse a snack or gum to focus on can help. Make sure to adhere to any dietary restrictions and make it something they aren’t likely to choke on.
Set a Timer
If you need to use the bathroom, take a shower, or run an errand, try setting a timer. Give your spouse the timer and tell them you will be back when it goes off. Make sure to add plenty of time to the timer so that it won’t go off before you return.
Make Time for Yourself
Set aside some time daily that is just for you. Read a book or enjoy your favorite hobby. If you establish a routine for waking up and bedtime, schedule your alone time before they wake up or after they go to bed for the night.
Recruit Another Caregiver
You must take care of your needs and do things for yourself. Getting some time away to recharge is something you shouldn’t feel guilty for. If you have other family members or friends that can stay with your spouse occasionally, ask them for help.
If you don’t, consider hiring an elder care provider to give you some time off. It can be difficult at first to adjust to a new person, but in time your spouse can grow to feel secure when left in their care.
Join a Support Group
Support groups are beneficial for several reasons. It gives you a chance to vent your frustrations in a safe space and hear from other people experiencing similar situations. You can find out what is working for them and try it out. You never know what kinds of tips and wisdom you will learn from others sharing your same struggles.
Recommended Reading: 10 Tips for Coping with Dementia Shadowing
Don’t wait too long to ask for help. Caregivers burn out fast if they aren’t paying attention to their own needs. Don’t feel guilty for taking the time to recharge and asking for help.
Request a consultation to talk to one of our Professional Care Providers today! They will work with you on a case-by-case basis to formulate a care plan to help you and your spouse.
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Life over 50 is complicated. From illnesses to general aging-related difficulties, there's a lot to learn and a lot to cope with. We understand and we're here to help answer questions and provide guidance on your options.