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Helping Children and Grandchildren Cope

It’s difficult enough for adults to grasp all the ramifications of Alzheimer’s, so as you can imagine, it’s quite a chasm for children to cross, young or teenaged. It’s particularly hard if, in the case of early-onset Alzheimer’s, it is a child’s parent who is affected—but most of the time the child’s close relative with Alzheimer’s is a grandparent.

Because Alzheimer’s progresses continually, it’s important that you not hide from a child that this person he or she knows and loves is going to be going through dramatic changes. Younger children will often take a grandparent for granted, as someone who is there to love, without understanding that because of their age they won’t be around forever. Therefore, it’s vital that during the time when a grandparent can still interact with their grandchildren that they do so as much as possible. You want to make sure that the last image a child has of Grandma or Grandpa isn’t just the one of them at their worst, but that instead those memories from the final days are well balanced against many other, more positive memories.

I know it’s going to be tempting to keep the diagnosis of Alzheimer’s secret from children, but since there is no cure and the child is going to see the changes taking place no matter what, it is better to be proactive than to try to cover up what is happening. Yes, long good-byes may be sadder, but rest assured that when these children become adults they will thank you for making them a full part of the transition time, before dementia sets in entirely.

Another reason to be open about what is happening is that there may be more than one grandchild involved in this process. You don’t want an older child communicating the wrong message to a younger one. You want to control the family dynamics as best and as positively as you can, though it may not always be possible to have full control. If you are hiding what is going on, however, children will sense it anyway, and the outcome is then more likely to come out negatively, especially if it causes a child to be anxious or afraid.

By the way, this process is a two-way street. By making sure that children spend as much quality time with a grandparent as possible, this will also help to raise the grandparent’s spirits in what are going to be very trying times. Whether it’s a trip to Disneyland or a game of Go Fish, being with their grandchildren will help to take their minds off the fears surrounding their current situation. In fact, there is probably nothing that gives them more pleasure during this time period than being with children, so if this means missing school activities occasionally, or taking a season off from playing Little League, do all you can to keep this grandparent together with his or her grandchildren as often as possible. Getting the child’s cooperation is one reason why you have to explain to the child exactly what is transpiring. Let the child know that he or she is actually being a big help by spending time with Grandma or Grandpa and that helping to bolster their spirits is an important contribution.

There’s something else you need to do when your children are with their grandparent: Document these moments. Take lots of pictures of Grandma reading a book to them, or shoot a ton of video of Grandpa taking them fishing. This way, they’ll have mementos to support those wonderful memories. It is going to be difficult for a child to forget their grandparent’s final days. But if later on you can put out a lot of pictures of them together in happier times, it will help reinforce the positive memories and downplay those that are better forgotten.

That’s not to say that, once dementia advances, every second will be so bad that you won’t want the children to have any memories of those times. Young children may be able to interact with their grandparent better than adults. If they can finger paint with Grandpa, this is an activity they’ll both enjoy. Afterward, you can hang up their painting, so that the child has a visible reminder that Grandpa can be a lot of fun.

When an older person is a widow or widower, one thing they all miss is being touched, regardless of their mental state. We all need to be touched, but people who live alone usually miss this especially. Again, here young children can help to fill that void. Put on a video that the child enjoys and plop them in Grandma’s lap so that they can watch together. Grandma may not care for what’s being shown, but she’ll treasure having a warm little body up against her.

Children who are slightly older may enjoy doing things for a grandparent that will help fill the time. You can have a fourth-grader read a simple book to their grandparent. This will serve many purposes. The child will feel good about being helpful, will be building up positive memories, and will be better able to keep the relationship going. If Grandma is always sitting in a corner by herself, she’ll come to appear as a piece of furniture. By reading to Grandma, Grandma becomes more of a real, present person, even if she’s not entirely sure who it is that is reading to her or what the story is about.

Children can help in other ways. If their grandparent needs help being fed, it’s a chore they may be able to handle. A little girl might brush Grandma’s hair, or put cream on her hands and arms. A little boy might be put in charge of reminding a grandparent to go to the toilet or change channels on the TV. If Grandpa is into sports, they could watch a game together.

The point is to be creative in finding ways of maintaining the connection so that both child and grandparent feel the benefits that can arise from such a relationship. The level of help a child can give will differ depending on age and personality, but regardless of age don’t allow a child to lose all contact. Dealing with someone with dementia may not be the most pleasant of tasks, yet it’s still a teachable moment for any child. It will help them to better understand that life isn’t about only happy times. Having to deal with a grandparent with Alzheimer’s will lead to personal growth and, overall, can be a positive experience if you help to pave the way for that outcome.

Of course, you’ll have to address any fears that the child may have. For many children, this will be their first experience with either serious illness of disease. They’ll need help in dealing with what is going on. There are plenty of children’s books that deal with such topics, and I’d recommend looking through some and choosing the ones that you feel will help your child. Reading them together will allow you to address the topics raised in the book. If you are particularly under a lot of pressure due to the duties of raising a family, or perhaps working outside the home, as well as being a caregiver, perhaps you can assign someone else the role of helping children through this. It could be an older sibling, another grandparent, or an aunt or uncle.

The changes brought on by Alzheimer’s won’t happen overnight, but they can be significant over a relatively short period of time. If a child frequently spends time with their grandparent, they’ll notice the changes, which will give them time to adapt. A grandchild who rarely sees a grandparent may have a bit more difficulty dealing with the severity of the change that has taken place, particularly if they haven’t been together in a while. That’s going to be especially true if their grandparent suddenly doesn’t recognize them. For that reason, it’s important to keep grandchildren in the loop as much as possible. Parents shouldn’t hide news of the disease’s progression. Yes, it would be better if they could be around their grandparent more often, but by keeping them fully informed, they’ll be less shocked when they do see them.

TEENS

I know a psychologist who did a study that showed that the whole idea of adolescence is a myth. In other societies, including in early American history, rebellion isn’t part of a teen’s life; instead, teens are often married and working at full-time jobs. It is mostly in modern Western societies where teens are required to remain in school, and thus not allowed to become full-fledged adults, where this rebellious attitude tends to develop. Nevertheless, teens in our society do have a unique status, and I can’t wave a magic wand and make it go away. The fact that we encourage them to stay in school does artificially extend their childhood, but despite that, there are many teens who act as responsibly as adults, and in some cases more so.

My guess is that how you treat your teen on other life matters will carry over to how they react toward a grandparent with Alzheimer’s. If your teen already helps out with chores and maybe even has a part-time job, he or she will more easily be integrated into the caregiving process. However, a teen who’s never been given responsibilities beyond doing his or her homework is more likely to resent being asked to help out. Since I don’t know your teens, I can’t assume anything, so let me offer you some general suggestions on how your teen could be integrated into the care of their grandparent, especially if the teen and the grandparent are living under the same roof.

Because teens are capable of contributing a great deal toward caring for a grandparent, I would urge you to sit down with your teen and let him offer up a plan. Hopefully, he can come up with a schedule that will be helpful but not cramp his lifestyle too much. Of course, it’s quite possible that the care of the grandparent places a very large burden on your family, especially financially, in which case teens in the family are going to have to kick in as much as possible, and the schedule is not going to be voluntary but rather practical. If that’s the case, don’t be afraid to use whatever tools are at your disposal, including a cautious degree of guilt, to get their full support.

The point is to treat your teen like an adult as much as possible, and in such a serious matter, I believe a teen will respond in an adult manner. But if you shoulder all the burden of what is happening and don’t ask your teen to be a partner, there’s every chance that a teen will shirk his or her responsibilities as a result of a combination of peer pressure (it’s not cool to say you can’t go out because you have to take care of a grandparent), the difficulties in taking care of someone with dementia, and the negative emotions the challenges inherent in the situation will cause your teen.

However, even a teen who volunteers to help can be prone to peer pressure. If all of his friends are going bowling, he’s going to want to go too in order not to feel left out. So, a key word when it comes to getting teens to assist you is consistency. Many teens are very good at coming up with excuses. You must not give in, because once you start heading down that road, the excuses will come at a fast and furious pace. If a teen has promised to take care of Grandpa on Thursday afternoons after school, he must be held to that appointment, unless he knows in advance that he needs to alter the schedule, and then with proper notice changes can be made. But last-second excuses should not be acceptable.

It may be possible for a teen to pull a Tom Sawyer and get a friend to help. On the one hand, that may be okay, as having a peer to socialize with may make his or her assignment more palatable. But you have to be careful that this doesn’t turn into a social visit, leaving the grandparent feeling abandoned. Since it’s possible that this grandparent may not be able to report conduct that is inappropriate, you have to supervise to the best of your ability if a friend of your teen comes over, and I would limit it to only one. If the invited friend is one you don’t particularly care for, then speak up. A bad influence in such a situation could spell real trouble.

On the one hand, I don’t want to sound too negative when it comes to young people in this age group, while on the other, I know that peer pressure can propel them to act inappropriately. The bottom line is that helping to care for a grandparent with Alzheimer’s can be what is called a “teachable moment.” The teen can not only provide useful assistance, but can also learn some important life lessons. Learning to cope with adversity is a necessary skill. A teen who pitches in will come out stronger for the experience. So, whether you feel your teen is mostly responsible or mostly irresponsible, I would encourage you to make him or her part of the caregiving team. They have a lot to provide in terms of manpower and love and can learn a lot from the experience, so you should do all you can to make them an active participant.

There is also the question of the teen’s feelings about the changes he or she witnesses in their grandparent. Many teens have been around their grandparents all their life, so this is someone they know well. While adults can’t be fully prepared to deal with someone with Alzheimer’s, teens will be even less so. Some may be afraid to show their real emotions, while others may actually become hysterical. Since a teen’s emotions may be on a bit of a roller coaster ride as their own hormones go up and down, exactly how they’ll react on a day-to-day basis may be unpredictable. However, that shouldn’t change their overall duty to help out. If a teen says, “It freaks me out to see Grandma like this,” the teen has to be made to understand that it freaks everyone out. Let your teen know that this is an experience that you’d prefer not to have as well, but explain to them the importance of family cooperation and instill in them a sense of duty, both of which will stand them in good stead for the rest of their life. Doing chores that you’d rather not do is part of growing up, and the more a teen wants to be treated as an adult, the more he or she is going to have to adapt to this situation.

To encourage a teen to act more like an adult by playing an important role in the care of his or her grandparent, you should allow your teen a little more freedom at other times. If a teen is showing that he or she is very responsible when it comes to taking care of a grandparent, especially one with Alzheimer’s, which is not an easy task, you might consider giving your son or daughter more freedom in other matters as an acknowledgment that they are showing the maturity that warrants more privileges.

Remind your son or daughter of any age that he or she is also helping you. Don’t try to hide how hard this situation is on you and your spouse. When parents have difficulties, whether financial or health or relationship-wise, the tendency is often to “protect” the child. However, children often sense something is wrong and may think that they are at fault, so at least a certain amount of honesty is the better approach. And, when it comes to a close relative with Alzheimer’s, well, that isn’t something that’s easily swept under the rug. It’s better to be honest with your child and work to allay their fears than to cover up a situation that in the near future is going to make itself known, no matter what.

DANGER SIGNS

Having a significant other who’s afflicted with a disease like Alzheimer’s is definitely going to be upsetting to your children, whatever their age. That they become sad or upset is understandable. But there are sometimes indications that they may be more impacted by the situation emotionally than may be healthy. If their behavior changes in any significant ways, speak to them about it. Be alert for major difference in sleep habits, a decrease in grades, a change in their social life, desiring to spend more or less time with friends, or wanting to be alone. I’ve been saying here that children need to be part of the process, but that doesn’t mean that every child is capable of handling Alzheimer’s at such close range. You might even note a difference is how siblings react. If one child is showing signs of having a serious problem dealing with a grandparent with Alzheimer’s—let’s say his or her grades suddenly nosedive—you may have to take steps to protect this child. Maybe some counseling will work. Or, maybe this child would benefit from a break by going on sleepovers or spending more time with friends.

If a child who seems to be having a difficult time with this situation won’t talk to you about it, seek help. Help could come from another family member, like a trusted aunt or uncle. Your child may feel that he or she can’t tell you their real feelings because they know how badly you feel, but they may have a strong need to communicate. And, if this behavior continues, don’t hesitate to seek professional help.

Having a grandparent change to such an extent that they no longer recognize family members is going to have a negative effect on every one of you. How could it not? How your children react is not insignificant, so be sensitive to how they’re acting. If the patient is really out of it and having him or her in the home is having quite a negative impact, that might push you toward sending the care recipient to a facility earlier than you had planned—and this in turn might offer a positive change that would be good for your entire family, as well as for you.

I mentioned earlier that a child might benefit from speaking to another, older relative. The same could be true for you, though the relative wouldn’t need to be older, just an adult. Sometimes, you really can’t see the forest for the trees. You may really be too close to your children, especially if you’re under stress, to clearly assess how they’re acting. So, if you have any doubts, or even if you don’t, speak to someone who is not so closely involved with the situation and see what they think. Your elderly parent is obviously very important to you, but at this stage in their lives, your children come first. You don’t want to coddle them, but you also don’t want to push them so hard that they break under the strain.