Dealing With Their Decreasing Abilities

Initially, minor forgetfulness is dealt with rather simply; in conversation, we offer a forgotten word, we help them find their misplaced eyeglasses and we turn off a burning tea kettle. Yet as dementia advances, individuals need a lot more aid to get along with their decreasing abilities.

Since decreasing abilities happen gradually, often you cannot anticipate and prepare yourself for what will happen next. Our experience showed us that some things can be generally anticipated, but others cannot. The fine line you must draw is between being truly helpful to your loved one and maintaining their dignity versus taking away their self-worth and making them feel like a child. It’s a hard line to draw!

As dementia advances, you will often feel like your loved one must be treated as a child. Again, in some ways, their abilities are like those of a child, yet in others, they are not.

Part of the real challenges of caring for one with dementia is keeping them occupied in a meaningful manner. We often take for granted how much people truly do for themselves and keep themselves busy. As dementia advances, your loved one will become more and more dependent. It is easy to grasp the concept of taking care of someone when they are fully dependent, you expect a grueling amount of physical work. I think it’s harder to grasp exactly what to do during those middle stages of dementia.

Let’s jump into specifics.

I. How to Talk to Someone with Dementia

Your ability to communicate with your loved one will clearly depend on whether they are able to talk themselves and what stage they are and will most likely get more difficult as the disease progresses. At the beginning, my mom would simply have forgetful moments. Later, she didn’t talk at all. The most important thing to keep in mind is simply patience. We all rush through our lives, and I truly believe dealing with a loved one with dementia truly calls for you to slow down.

1. If you find your loved one is simply talking less; you must be active in starting more conversations.

2. You should actively be aware of when you are avoiding talking to the person because it is more difficult and avoid the inclination.

Throughout my mom’s journey, the one thing I kept in my head was that "she was a person too". I know this seems silly, but the simple phrase reminded me to take into consideration everything from all her rights as a human being to considering her desires and needs.

3. Encourage others to speak with your loved one as well. 

People will deal with the decline of your loved one differently. If you are the primary caretaker, it might be difficult to accept how others, be it family, friends or outsiders, deal with your loved one. Why does a sibling not call them more, why doesn’t one of their friends see them anymore – that type of thing. What brought me the most peace was simply accepting that it is what it is. Yes, you should convey how important interaction is for your loved one, but you have to stop yourself from being upset over others' failure to do what you think they should be doing.

4. Speak clearly and slowly and make eye contact with your loved one.

You’ll find people tend to speak loudly to someone with dementia, even if they have no hearing difficulty! Clarity is what is most important. Keep things simple. For example, don’t say “Do you want a cappuccino, plain coffee or a latte?” Start slow – “Do you want coffee?” Then “Would you like a latte?” Giving many choices make things difficult.

5. Be patient and wait for them to respond. Only offer them a response when it’s really been a while, or you see them struggling a lot. 

6.  Let them speak for themselves. As dementia progresses, loved ones will often do the talking for the person, even when they can respond. Don’t tell others what “she” wants, if “she” can respond herself.

7. Never talk in front of the loved one in their presence as if they were not there.

This probably bothered me the most. You can never know exactly what your loved one understands, as dementia progresses, yet you will find people talking in their presence about things they absolutely should not. For example, do not talk about their condition in front of them. Do not make apologies to others for behaviors that they clearly have no control of if they can see or hear you making same.

8. Do not make fun of them or patronize them.

As the disease progresses, you will find you loved one saying many things that are ridiculous, simply wrong, or even improper. Simply do not forget that not only are they becoming forgetful, but their filter of what is socially acceptable may simply be turned off and it is not something they can control.

9. Acknowledge what they say, even if it is wrong or out of context.

It’s important to make them feel valued and think about it, they are not any less valued just because they have problems articulating, are they?

10. Be patient and calm when speaking to them and keep your voice friendly.

11. Try to keep a respectful distance when speaking to them or putting yourself lower than them, so that you are less intimidating.

12. If they don’t mind, hold their hand while talking to them to make them feel more comfortable.

13. Try not to interrupt them when they are speaking.

14. Give them your full attention and minimize distractions, such as the television in the background.

For more ideas on speaking to someone with dementia, check out https://www.nhs.uk/conditions/dementia/communication-and-dementia/

II. Ability to take care of personal hygiene and dressing

From forgetting to brush their teeth in the early stages to being unable to do barely anything in later stages, it is important to keep your loved one clean, comfortable, and warm. Here’s some tips that will vary depending on their ability.

1. Showering: One of the smartest things you can do when they are still able to shower by themselves is to invest in refillable smaller bottles of shampoo and conditioner, bottles that are clearly identifiable and not a struggle to use. Alternatively, invest in a station for the shower wall as they have at spas where you refill. This is also good for face and body soap.

Using small bottles not only means less waste, but also prevents the danger of a whole big bottle pouring on the shower floor and becoming a hazardous condition. Today’s bottles of shampoo and conditioner are often purchased as a matching pair and with small writing on them, often are hard to tell which is which until they are poured out. The same goes for face and body soap, bars can be slippery and involve chasing after them when they fall.

2. If your shower or tub does not have a rubberized mat or stickers, now is the time to get one.

Yes, they can become gross, but the chance of falling becomes greater for those with dementia.

3. Hair. Many people feel the key here is to simplify their hairstyle, cut it short if it’s long, forgo the dye job and let it go grey etc. Although it may be smart to reduce a complicated routine, I truly believe that especially for women, we can be tied within our identify to our hairstyle, that the ritual of grooming our hair can be pleasant and that simply cutting it off may not be the answer.

My mom’s regular ritual for decades was to have the hairdresser shampoo and style her hair once a week. She had the same hairdresser for decades, so it included a therapy session and social outing as well! She always kept her hair long as my dad loved and kept it that way for many years after my dad passed away. She always wanted to look beautiful and her long blonde hair was her part of her glory.

Even at the assisted living facilities, she enjoyed when the hairdresser would come. I remember being very upset with the fact that none of the facilities seem to care about really putting her together – they started with ponytails and putting her hair up in a bun, but I just accepted it. I felt I had to pick my battles and focus on real care. In hindsight, I do think I should have made a bigger deal sometimes. What I did do was take the time to style her hair and put on at least a little makeup practically every time I went. She truly seems to enjoy the pampering and the effect.

4. Hands and nails. Again, if your loved one was into polishing their nails, they may no longer be able to do so anymore. Here, I simply feel an outing to the manicurist or you doing it for them offers them a treat. As far as feet, keep up pedicures - they can become almost a medical issue as opposed to purely cosmetic. Regular trips to the podiatrist are also important.

At first, we had the manicurist do her nails when she was at the assisted living until she started avidly picking the nail polish off in almost a nervous habit fashion. At that point, we stopped the manicures.

5. Toileting. – One of my biggest areas of disagreement regarding my mom had to do with the issue of toileting, namely in regard to incontinence products. To me, this was an issue of her dignity and cleanliness versus the inconvenience of others doing what was easiest for themselves.

We’ll start with the fact that a term many around her used, “diapers”, made me cringe. Yes, I understood the need for this type of product on a long plane ride where the hassle of an accident could prove disastrous. Yes, as time went on, I understood the need at nighttime. Yes, eventually I embraced the fact that she needed them 24/7. Yet, in between, the issue really distressed me.

When my mom stayed with us for those 3 ½ weeks, we did not have her use them at all and she only had two accidents. We found that she went into the bathroom by herself frequently. This, even though her companion previously had her regularly using them. Yet, very quickly, her first assisted facility was demanding I provide pads, what I started to call “disposable panties” and protective cloths for the bed. Again, at the first place, they would frequently aid her in going to the bathroom herself and had a good number of bathrooms in the public spaces. Yet, the second place had her full on in "diapers" from day one. There, I had 2 choices: pay for their overpriced monthly fee for poor quality ones or provide my own. I received more calls regarding the need to provide more “diapers” than I did for anything else – including calls at 10:00 pm on Friday nights which put my heart in terror of what could have happened.

The second place had a crazy system, where the products were not kept in her room, but supposedly were logged in to a central room. Sometimes, the order would be sitting at the front desk for days while the nurses were telling me she didn’t have any. It truly was a hassle. 

That being said. My mom loved pretty lingerie and sexy panties. Early on, we used pads instead of full-on “disposable panties.” I found the “Depends” brand to be reasonably priced yet of better quality than some generics I tried. Yes, there may come a time when you need to buy daytime ones and nighttime ones. As far as keeping stock on hand, try to get a realistic estimate of how many they need and keep track of their supply. Remember that even if you order from Amazon sometimes there are delays. Tell them, late-night calls for them are not acceptable.

As far as accidents, it simply is good to have on hand disposable wipes and simply be helpful, yet respectful. This can be a little heart wrenching to do. I remember my mom, using her dirtied white panties to wipe down my bathroom sink after she ‘cleaned up” a mess. I cringed – from a cleanliness  point of view – but seeing how distressed she was and how she wanted to clean it up, I let her do it, knowing I would do a full-on clean up later.

Since my mom was at a facility later, we really didn’t deal with many more accidents, but keep in mind, that when they do need incontinence products, they need them, because having accidents too often can be very demoralizing as well.

Realize also that there is a real medical issue here – not just a physical one. Urinary Tract Infections (UTI’s) are a real problem for those with dementia. Whenever my mom was out of sorts, the first thing the physician would do is test her for UTI’s because those with dementia basically feel something is wrong yet can’t identify what and do not know how to handle it. Often, they will simply act like they are sick, sleep all the time or do other things that are concerning.

In hindsight, this is how I think the issue is best handled: Be honest about the issue to the administration of your assisted living facility and to your caregivers. Keep on top of the situation. Tell them how you really feel. I think in many instances, her care might have been a little better if I put up more of a fuss and was less accepting of what I saw as less than perfect treatment. I came to my own understanding that memory care facilities, although they make you believe that they are giving your loved one complete care, really are not, meaning they are not giving the complete care that you would if you could. I justified that they were running a business and that there were no other viable alternatives. Yet, I do think in many ways they did what was easiest for themselves, I really do and that I should have pushed harder.

6. Dressing

Again, here you may  want to simplify things. First clean out their closet (or help them if they can) of clothing that no longer fits or is inappropriate for their lifestyle or the season. The less options, the easier it will be for them to get dressed. Over time, help transition their wardrobe to simpler clothes – avoid things that are tucked in, avoid belts and other complicated things that are not only harder to put on, but harder to take off which might cause some accidents that can be avoided.

This does not mean to stick them in sweatpants and t-shirts. My mom loved beautiful clothing and dressed well to the end, although pants became more the pull-on type. Assisted living facilities are notorious for losing residents' clothing, so definitely put name tags in their clothing.

One of the funny things with my mom was that a nurse cornered my sister one time, when she visited, and told her my mom needed more pajamas. My sister diligently went out and bought her a pair. The funniest thing was my mom always slept in the nude and hated pajamas! I had purchased some for the first assisted living facility, which quickly lost them and never replaced them!

Forget about their expensive jewelry. My mom never took her wedding ring off her whole life and although I tried to get her to take it off before she left for assisted living, she refused. One time, I went and noticed it was no longer on her finger. I was ecstatic when one of the head people called me in to show me they had gotten her to take it off and had put it in the safe and asked that I take it home.

If your loved one has beautiful jewelry, replace it with a couple of costume items if they are in a facility. It’s just not worth having to worry about.

7. Glasses and hearing aids. My mom had a very slight impairment, and we purchased her a pair of $5,000-dollar hearing aids. When she stayed with us, she diligently recharged them every night and would have us help her put them on every morning. Yet, she had lost them twice at her own home. We had a couple of times we had to search for them and they were pricey. The first place, put them in the safe, and I thought it was better than them losing them. How could they possibly keep track of such a tiny thing in a big place?

In hindsight, I wish there was a better solution. Basically, we had her go without because of the impossibility of keeping track of them. She had Lasik so glasses weren’t an issue. The best I can offer here is to label things and to have a frank discussion with your caregivers.

8. Washing one's face and brushing one's teeth.

My mom was famous for her sparkling white teeth – all her own at age 87, yet her dental care and the condition of her teeth clearly went down once she was in assisted living. The bottom line, at the beginning, watch your loved one’s dental hygiene and make sure they are brushing often and well. Take them on regular dental visits. When they are in a facility, be vigilant about them brushing their teeth. When you are there, an extra brushing could not hurt!

Again, teeth brushing and washing their face is something you must do for them if they can no longer do it for themselves.

III. Keeping Them Occupied and Entertained.

When my mom’s memory and speech started to dissipate, she was still truly able-bodied. She had been traveling the world, going on 4-mile hikes and had no problems with walking, her strength or anything! I always believed in many ways this made it more difficult to take care of her, as it did. She didn’t realize the dangers of her going walking outside, slipping away at a mall, and put simply, couldn’t just be stuck in front of a television to entertain herself. I know this sounds tough, but it’s because I truly do think it is difficult to keep those moderately inflicted with dementia entertained and busy and do think some facilities use the television as the means to do it.

Early on, your loved one may have difficulties, but with a little creative thought, you can help them keep safe and busy.

1. Cooking.

There may come a time when it is not safe for them or others to keep cooking. Yet, watch them closely and let them do what they can do safely. For example, they may no longer be able to cook a meal, but they can certainly shred lettuce for the salad, perhaps spread butter on bread, etc. Again, watch them closely and you will be able to determine when they are no longer able to handle knives, can no longer be trusted to turn off an oven and the like. When you first notice things are awry, simply get in the habit of checking all appliances and making sure they are turned "off."

2. Reading. 

My mom loved to read, from the morning and Sunday newspapers to books. Slowly, her ability to read dissipated. Slowly, her ability to understand what the words she was reading dissipated. One of the things she started doing was reading the newspaper out loud. Here, you simply must let them do what they can. If they are enjoying reading the words out loud, let them!

Eventually, when she was in the facility, I started to read to her. It then occurred to me that I had some fabulous children’s books on famous artists, so I brought them to read to her so that she could see the pictures and hear simple stories about them. Be creative.

3. Exercise and Fitness. 

Help them do what they are able to. I always believed that when it comes to exercise, something is better than nothing. Depending on their physical condition, anything you can get them to do is better than just sitting around or laying in bed. When it came to walking, we had to teach my mother to hold our hands, something she never really liked to do. We were extra careful at crosswalks – even choosing routes that had less of them.

Our first assisted living facility had just a wonderful program for keeping the residents busy from arts and crafts activities to physical ones to parties. Our second one, in my opinion, did not. More than not, residents were found sitting in chairs in a big room in front of the television. At the second facility, I didn’t really see the residents doing the crafts, it was more of them watching the staff do the crafts.

My mom loved to walk the halls at the facilities, and they generally let her do it. Again, you must be the advocate for your loved one. Do not simply accept vague representations that they attended some activities or that they weren’t in the mood and skipped out.

Children's activities are often helpful. We bought her a weird blue ball to throw around and other kid activities. 

Television, cable and YouTube offer many exercise programs they may be able to enjoy.

4. Arts and Crafts.

My mom liked knitting at different points in her life and it was one of the things that kept her very busy when she stayed with us. She could no longer “cast on,” so we did it for her. She would mess up rows and we would fix them for her. In the end, many of the things she made weren’t that beautiful, but that wasn’t the point. She was proud of being productive and creating. The same would go for painting. We even had her start watching painting shows.

5. Taking Them Out. 

At a certain point, it becomes very difficult to take your loved one out alone, so I truly recommend realizing this and enlisting another person to help or forgoing the activity. There will be times that you will be alone, and you will realize you cannot let them out of your sight for even a minute. Forget about shopping for yourself when you go shopping. Hold hands. Even a stop for coffee, should be a "sit down and be served" spot, rather than a "wait online and pick up at the counter". Scoot your passenger seat back a little for them, so it will be easier for you to buckle and unbuckle their seat belt. Go around the car and shut it, do not depend on them shutting it properly. In the event your loved one likes to just take off, consider an ID bracelet and put your contact information on it. If you must go to the bathroom, take them with you and if it is their turn, go with them to any public bathrooms.

6.  Taking Them to Restaurants. 

Again, things will change as their condition deteriorates. One of the things we noticed early on is their social graces disappear because they no longer have a filter as to what was proper or expected. This included things like eating with their hands, picking their nose, and grabbing food off other people’s dishes! While early on in a home setting, I believed reminders and a gentle chiding might be appropriate, I never thought it was a appropriate to do so in public. As far as lookers-on, pay them no heed and do not feel you need to make excuses or apologize or explain. As time goes on, you really must accept these behaviors. Again, it is not their fault.

7. Other Ideas.

Early on you want to keep them doing what they had been doing as much as they can even if to a more limited extent. Later, you look more for things that they can simply enjoy and be engaged in. While trying not to use it as a babysitter, my mom loved movies and we watched movies on end together. She loved looking at old pictures. My mom loved romance and relished in hearing about mine and my daughters’ dating habits. My mom even loved seeing my little dog on the video screen when she was at the assisted living facility. She loved opera and I would play operas on the television for her. A lot of activities geared towards young children can be very useful because they are easy to understand and are generally very safe. We tried all sorts of children’s games. There is nothing right or wrong as long as it keeps them engaged and is safe!