The Sad Side of Caregiving for Family Members with Dementia

If you are a family caregiver, you know the difficulties of taking care of an aging person with any form dementia.  They forget so many things that you remember and may feel are important.  Eventually, they may forget your name and who you are.

If you’ve been reading this blog, you know that I take care of my god-sister.  She is a widow with no children, siblings or close family members – except me and my family.   During the the first ten years of my life, I was primarily raised by my god-mother.  Even though Gladys is old enough to be my mother, she and I were raised as sisters.

The Gladys that I grew up with was a strong, confident, self-sufficient woman.  Today, she is just a shell of her former self – she is the exact antithesis of what she used to be.  Granted, she has flash backs and threatens to knock the sh## out of one of the other clients at the adult day care center; but that’s rare.  Her body is weak, she is totally reliant on me and Fred (my husband) and her memory fades more each day.

Gladys knows who I am but she doesn’t know my name.  She often confuses me with my oldest daughter, Nichole and as a result she calls me Nichole.  My husband, Fred and daughter, Anita don’t have names.  Gladys manages to call them without using a name.

It’s very difficult for me to come to grips with this Gladys because I still see the strong, confident woman I knew in the past.  Yet, I realize that the past is exactly that – the past.

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Our Current Problem – Night Time Incontinence

Night time incontinence has become a real problem. Gladys still gets up during the night to use her bedside commode but she also manages to wet herself, usually between 2 AM and 5 AM. The answer to this problem could be super absorbent disposable underwear but it won’t work for us.  Gladys tends to remove her underwear sometime between 2 AM and 4 AM. We don’t know why she does this, and she doesn’t remember taking them off.

On the up side, I have started using washable underpads on top of her sheets. They are great for protecting the sheets and reduce the number of weekly laundry loads. At first I purchased the disposable underpads. They are effective for a moderate amount of wetness, but they start to disintegrate and I had used up the whole pack in a week. The washable underpads are fairly expensive (about $19 – $24 each) but they are reusable and very effective. They also come in a variety of sizes.

During the day, Gladys uses the bathroom and she rarely has an accident. Once in a while she doesn’t pull her underwear down far enough when she goes to the bathroom, but that doesn’t happen often.

A New Product from Depend

In case you haven’t seen them, Depend has introduced incontinence wear specifically designed for men and women. They were kind enough to send me some sample packs in size small and large.  I gave the pack of small to a friend for her mother.

These new underwear come in Extra Absorbency and Super Plus Absorbency. The underwear for women and men have a different leg cut, waist band color and absorbency protection where men and women need it most. Since I don’t wear them, I cant vouch for the comfort factor you’ll just have to take their word for it or try them yourself

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Five Things I Learned from Caregiving

Since becoming a caregiver for my god-sister, I have learned a few things and become more sensitive to aging issues.  At 56 years old, I’m no spring chicken so I know what it’s like to slow down a little, lose some flexibility and stamina. However, my aging issues are minor compared to my sister’s.

Some of what I have learned and developed increased sensitivity to are:

1. Slow Driving Seniors:  I am no longer impatient with slow driving seniors.  Just because I usually drive 10 miles over the speed limit doesn’t mean I need to be impatient with someone who is driving 10 miles under the speed limit.  I just go around them and appreciate that they are driving within their comfort level and I’m glad they can still get around by themselves.
2. Patience in Dressing:  On a normal day I can get showered, hair combed, makeup done and dressed in 30 minutes.  For the life of me, I could not understand why it took Gladys 1 1/2 hours to get dressed.  That is until I saw the Xtreme Aging Workshop segment on the Today Show.  Joint problems, vision problems and dexterity problems can add to slow movement.
3. Patience in Eating:  Similar to Patience in Dressing, joint and dexterity issues affect meal time.  I have to do three things for Gladys at meal time: 1) cover her up to catch spills and accidents; 2) giver her utensils that have a larger handle and 3) use plastic drinking vessels because glass is too heavy.
4. Handicapped Parking:  Before becoming a caregiver, I had never parked in a handicapped space and I did not understand why those extra stripped spaces were next to handicapped parking spaces.  Now I understand that those stripped spaces allow additional room to position wheel chairs and walkers.  I learned the disadvantage to not having that extra space at Gladys’ doctor’s office.  They don’t have those extra stripped spaces next to the handicapped parking, so if the lot is full, I have to stop in front of the office, let Gladys out and take her inside.  Then I have to go back out and park the car.
5. Handicapped Bathrooms:  I must admit, I have used handicapped bathrooms, especially at the airport.  The handicapped bathroom had enough space for me to move around comfortably with my purse, coat, briefcase and suitcase.  A few months ago I had to take Gladys to the hospital for some tests.  While we were there Gladys had to go to the bathroom.  We encountered several problems:  1) there was furniture on the wall opposite the bathroom so I had to move the furniture in order to get Gladys’ wheel chair through the door.  2) someone was in the handicap stall and Gladys couldn’t wait; so now we had to leave the wheel chair outside the stall while I tried to maneuver Gladys into a stall with no hand rail and no room for two people.  Needless to say, I no longer use the handicapped stall in the bathroom. You never know when someone who needs that stall will come in.

Of course, I have learned more than these five things, but I think they are enough for now.  What would you add to this list?

Related Reading:

Caregiving:  Wheel Chairs, Handicapped Parking and Baby Monitors
Caregiver’s Check List

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