Acknowledging the Hard Part

Caring for someone with dementia is hard. I often felt like I was failing—frustrated, emotional, and stretched thin while working and raising children. These feelings are normal. They don’t mean you don’t love the person—they mean you’re human. Dementia is tough for everyone involved, which is why we need support, shared stories, and practical tools.

​

Role Transition

One of the hardest parts is shifting from being a wife, husband, son, or daughter to becoming a carer. Many people take on this role later in life, right when they imagined retirement and peace. Suddenly, you’re managing medication, safety, routines, and behaviour changes. It can feel overwhelming and unfair.

It’s important to acknowledge that this wasn’t the life you planned. That doesn’t mean you love them any less. With support, it is possible to balance being a partner or child and being a carer.

I’ll admit—I initially stuck my head in the sand. I didn’t want to accept what was happening. But delaying acceptance only delayed support. Early diagnosis doesn’t make it easy, but it gives you answers, tools, and a sense that you’re not alone.

​

Legal and Financial Planning

Alongside emotional and practical care, families need to handle legal and financial matters early.

Finances

· Dementia affects decision-making early.

· Review bank accounts, bills, and available benefits (Attendance Allowance, Carer’s Allowance).

· Ask for a free care assessment from the local council.

​

Power of Attorney (POA)

Set up while the person can still consent:

· Health & Welfare – decisions about care, treatment, daily living.

· Property & Financial Affairs – money, bills, property.

Other Considerations

· Wills and advanced care planning.

· Understanding carers’ rights and support entitlements.

The earlier these conversations happen, the more control the person with dementia has.

The Caregiver’s Feelings & Coping

Caring for someone with dementia is as emotional as it is practical.

1. Guilt

· Feeling guilty for frustration, needing a break, or wishing life were different.

· Remember: guilt means you care.

· Breaks make you a better carer.

2. Grief (“living grief”)

· You grieve small losses as they happen.

· It’s okay to name this as grief.

· Cherish small moments of connection; journaling or counselling can help.

3. Frustration

· Repetition, resistance to care, endless demands.

· Step away when needed; breathe; use humour.

· The frustration is with the illness, not the person.

4. Loneliness

· Feeling isolated or forgotten.

· Join carer groups, ask for small bits of help, keep something in life that’s just yours.

​

​

You cannot pour from an empty cup.

​

​

Resources & Support

No one can care alone. Support is essential, not optional.

Medical Support

· GP, memory clinic, community mental health teams.

· Occupational therapists for home adaptations.

Practical Support

· Local council carer assessments.

· Respite care and day centres.

Emotional Support

· Carer support groups (in-person or online).

 

Family & Friends

People often want to help but don’t know how. Give them specific tasks:

· “Can you sit with Mum for an hour?”

· “Could you take Dad to his appointment?”

Accepting support is an act of strength.

Accepting Support & Getting Used to Caregivers

 

Many carers wait until burnout to accept help. But bringing someone into the home is a process.

How to adjust

1. Start before burnout—even an hour a week helps.

2. Begin small—short visits, simple tasks.

3. Build trust gradually—be present at first, then step back.

4. Let your loved one be involved where possible.

5. Use your time off wisely—rest, don’t just catch up on chores.

6. Adjust as needs change—review regularly.

​

Accepting help isn’t weakness—it’s love for your loved one and yourself.

Encouraging Independence

One lesson I learned: allow your loved one to keep doing familiar tasks—safely.

Daily tasks like folding laundry, gardening, or light cooking help preserve identity and confidence. I remember running a cookery group where people with dementia peeled and chopped vegetables with total focus—muscle memory brought them back into roles they recognised.

 

Do:

· Encourage safe involvement.

· Support old hobbies.

· Break tasks into steps.

· Use adapted tools.

· Praise effort.

​

Don’t:

· Take over everything for speed.

· Correct mistakes.

· Assume they can’t do something—look for adaptations.

Story: Finding the Funny Side

One day Mum came downstairs wearing her nightie over her clothes. Instead of correcting her, I said, “What a great idea—ready to go out and ready for bed!” We laughed, and the moment stayed calm. Humour is a powerful tool.

 

How Dementia Affects the Senses

Dementia affects how the brain processes hearing, sight, touch, taste, and smell.

Hearing

· Background noise is overwhelming.

· They may hear words but not understand them.

Sight

· Vision may be fine, but the brain misinterprets what it sees.

· A dark mat may look like a hole.

Touch

· Sensitivity changes.

· Dressing may feel uncomfortable or confusing.

Smell

· Reduced smell affects appetite and safety.

Taste

· Changing food preferences; craving sweets.

Adapting environments—calmer sound, good light, simple meals—makes life safer and more comfortable.

​

How the Senses Affect Personal Hygiene

Bathing and hygiene can become frightening because of sensory changes.

· Running water sounds loud or scary.

· Depth perception makes baths look dangerous.

· Touch feels uncomfortable.

· Smells and strong products overwhelm.

· Toothpaste flavours become unpleasant.

​

Tips

· Use soft lighting and warm towels.

· Break tasks into steps.

· Offer choices.

· Use gentle products.

· Reassure calmly.

If they resist washing, it’s usually fear or sensory discomfort—not stubbornness.

​

When Someone Is Confused

When confusion rises, too many people trying to help increases distress.

· One calm person is better than a crowd.

· Speak slowly, make gentle eye contact.

· If one approach doesn’t work, someone else can try quietly.

A calm presence is more powerful than many voices

​

When They Ask About Someone Who Has Died

Repeating the truth can cause repeated grief. It’s kinder to respond gently:

· “They’re not here right now, but you’re safe with me.”

· “Tell me about them—what did you love most?”

· Or redirect to a calming activity.

This isn’t lying—it’s protecting them from unnecessary pain.

​

Loss of Inhibitions

Dementia can damage the brain’s “social filters,” especially in frontotemporal dementia.

What it may look like

· Blunt or inappropriate comments.

· Undressing in public.

· Overeating.

· Impulsive behaviour.

Carer strategies

· Don’t take it personally.

· Redirect gently.

· Avoid shaming.

· Plan shorter, calmer outings.

This is brain change—not deliberate behaviour.

​

Incontinence

Common because dementia affects awareness of bladder/bowel signals.

Strategies

· Regular toilet trips.

· Clear pathways; good lighting.

· Easy clothing.

· Incontinence pads.

· Hydration.

· Rule out infections or constipation.

Always protect dignity—stay calm, avoid shame, offer privacy.

​

When Recognition Fades

One of the deepest heartbreaks is when a spouse or parent no longer recognises you. Yet connection can remain even without memory.

How to cope

· Step into their world rather than correcting them.

· Let go of the need to be right.

· Focus on emotional connection—touch, music, routine.

· Remember: they may forget your name, but they feel your presence.

You may grieve the relationship you once had, even as you care for the person still here. That grief is real.

​

The Carer’s Emotions & Needs

Caring brings:

· Anger

· Sadness

· Loneliness

· Embarrassment

· Guilt

These emotions do not make you a bad carer—they make you human.

​

Before burnout happens

· Accept help early.

· Start small with outside carers.

· Build trust slowly.

· Give yourself permission to rest.

You are more than a carer—you are a person with worth, needs, and a life of your own.

​

Caring for Yourself

You cannot give from an empty well.

Small steps

· Quiet moments with tea or fresh air.

· Short walks.

· Reconnecting with hobbies.

· Leaning on others.

· Talking to people who understand.

Your well-being shapes the care you give. You deserve joy, rest, and moments of light.

​

Final Thought

Supporting a loved one with dementia is an act of profound love—but it is also heavy. Remember:

· You are doing your best.

· You are not alone.

· Support is available.

· Your needs matter too.

Dementia changes many things, but compassion, patience, humour, and connection can still shine through. Together, we can help each other feel prepared, supported, and less alone