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Helping Teens Cope with a Grandparent’s Alzheimer’s Disease

teens and Alzheimer'sAn Alzheimer’s diagnosis challenges everyone in the patient’s family. Teenagers may sometimes seem to be wrapped up in their own worlds, but a grandparent who has Alzheimer’s disease can be very troubling for them and significantly affect their lives. Of course, it goes without saying that when a teenager’s parent is diagnosed with Alzheimer’s, it is all the more devastating. Teenagers are likely to need some help from older members of the family in understanding the disease and what they can do to cope. First, reassure your teenager that the emotions that they’re going through – which may include fear, regret, confusion, and anger as well as sadness – are all normal responses. It may be helpful for them to hear that this will be a difficult time in the family, and for you to acknowledge that this experience is a hard one for them specifically. And of course, it may be good for them to know that they are far from being the only teen in the world dealing with a grandparent with Alzheimer’s, even if none of their friends have any experience with the disease. If there’s no support group in your area that they can turn to, you may want to point them to the website of AFA Teens, a branch of the Alzheimer’s Foundation of America. There they can find articles written just for them, a community message board where they can connect with other teens, and numerous other resources. One of the most useful things you can do is to explain to your teenager how to communicate with their grandparent. The following are some tips you can pass along to them:
  • Approach a person with Alzheimer’s from the front, so that they are aware someone is coming.
  • Use their name to get their attention.
  • Ask questions one by one, rather than giving them too much to think about at once.
  • Maintain eye contact.
  • Speak clearly and not too fast.
  • Remember that if they forget your name, it says nothing about how much they love you. Just be patient and tell them who you are.
  • Use a voice that is gentle and kind.
  • Smile and use hand gestures and other body language. This sets a positive tone and makes you easier to understand.
One aspect of the disease that teens have trouble with is how to spend time with their grandparent. How do you connect with someone who doesn’t even remember you? Let them know that their grandparent will be glad to have someone come visit them and pay attention to them, even if they don’t know who that someone is. Here are some tips for visits:
  • Help grandparents do some basic, manageable chores. The feeling of getting something done and being useful can be very therapeutic.
  • Ask them questions about the distant past, for example: “What was your life like when you were my age?”
  • Listen to your grandparent’s favorite music. This may also get them talking about the past.
  • Go through family photo albums, especially older ones.
  • Play a game together or work on a puzzle.
  • Read them something that they might enjoy.
It can be easy to forget the needs of teenagers during this difficult time, especially for a parent who is scrambling just to take care of their aging mom or dad. But remember that teens can be very sensitive to what’s going on around them. Spending just a little time to help them adjust to what’s going on can make all the difference.
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When Your Spouse Has Dementia, Part II

spouse with dementia intimacyPart I of this series covered the emotions you might experience when putting a spouse into memory care. When your spouse moves out of the home you’ve shared and into memory care, you’ll need to work on building a new relationship, one that may not be the same as the one you’ve grown used to, but can still give you a connection to your life partner. You may find that your spouse no longer knows who you are. As heartbreaking as that is, they likely can still recognize you as an important person in their life. Don’t worry too much about convincing them of who you are, as this will likely only lead to frustration. Regardless of whether they know you as you, you’re still important. You’re probably the one they see most often, and they know that you care about them a great deal. It may be hard to accept, but know that that might be the highest honor your spouse can give you in their current state. Your visits, even if your spouse isn’t aware of them or doesn’t register their significance, are now the most important way of honoring your marriage. It’s possible to find new ways of enjoying intimacy with each other. A good care facility should give you ways of having uninterrupted time alone. Furthermore, now that you no longer have the burden of being your spouse’s primary caregiver, you can focus on the relationship the two of you have. You can be there for them in other ways beyond taking care of basic functions. You may even find that this new focus on love itself, without day to day hassles, brings you even closer than you were before, and eliminates feelings of guilt and resentment. Though it’s important to nurture your marriage, it is also crucial during this time that you care for yourself. While your spouse was still at home, you likely put off your own needs and desires, and now is the time to remedy that. Make sure that you address any of your own neglected health needs, both physical and mental. As you probably know, you can only help someone else if you help yourself first. There is no cure for dementia, but despite this a move to memory care can result in healing for both of you. You may not only be caring for your loved one’s condition, but also for the health of your relationship.
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When Your Spouse Has Dementia, Part I

Spouse with dementiaWe all agree that marriages that have lasted decades are precious. These couples have come to know each other in ways so intimate that their other relationships pale in comparison. When one half is diagnosed with dementia and moving to a memory care facility becomes necessary, the separation is of course heartbreaking. Though there may in part be some relief on the part of the spouse who was serving as a caregiver, such a drastic life change requires much strength and bravery from both. This change often comes quite suddenly, and can be overwhelming. Possibly it was precipitated by an emergency hospital visit or a frightening incident at home. Indeed, this may be the most difficult challenge a couple’s relationship has ever faced. The most crucial time is the first few months, as they enter into new and unknown territory. The following are common emotions and experiences you may have during this time:
  • A sense of loss of control as you are no longer responsible for your spouse’s day to day care
  • Struggles with how to handle a sudden increase in free time and an empty home
  • Guilt at being unable to continue to care for your spouse at home
  • Anger and despair that the life you shared, and your closest friend, is gone
  • Fear about what the future may hold
  • Second guessing the decision you’ve made
It is important to acknowledge these experiences and emotions if you are to cope with this change successfully. You may wonder if negative feelings or feelings of relief are “wrong.” Or your feelings of sadness and grief may overwhelm you. However, it’s important that you come to view the situation in a new way that will not be destructive. This is a difficult decision to make, especially if your spouse doesn’t want to leave home. But remember that the decision to enter a memory care facility is in your spouse’s best interest, and demonstrates the utmost care for their well-being on your part. There they will be cared for safely and with professional skill. In addition to working on changing your perspective, you may also want to seek out counseling, support groups, or spiritual guidance. Time with family may also help. Finally, being open with your grief can also help you heal. The next post will cover how to foster intimacy in this situation and how to continue with your relationship despite the separation.
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Coping with the Loss of Your Loved One to Alzheimer’s

Losing a loved one to Alzheimer's isn't easy.If you feel that you’ve already lost your loved one, even though he or she is still alive, you may be experiencing some of the classic and normal signs of grief that usually aren’t felt until your loved one has died. Reading articles, websites, and books about coping can be helpful, and you can also consider some of these ideas. Know That They’re Still There Remember that at one time, your parent knew a different “you.” You as a baby, a toddler, and a child were a different version of you, but it was you nonetheless. If you can see your parent as being at a different phase of his or her life, it can be less painful than allowing yourself to think that he or she is gone. Cherish the Memories Make the assumption that your loved ones can see and hear some of what you’re saying and doing. Talk to them, read to them, and continue the same as you would if they were sitting up smiling at you. It will absolutely give you much comfort in knowing that you have truly done your best. Be Kind to Yourself Were you patient enough? Did you love them enough? Did you respond quickly enough to feed them, change them, and answer the phone when they called? Were you…good enough? Yes. You were. The loving care that your parent is receiving now is a result of you being “good enough.” Your parent cared for you, and you were able to come full circle and care for him or her and ensure that he or she is receiving the best possible care. Explore Others’ Experiences When he was diagnosed at the age of 57, Tomas DeBaggio wrote Losing My Mind: An Intimate Look at Life with Alzheimer’s. His book, the first of its kind, chronicled the extraordinary account of his journey through the disease. He said that it “silently hollows the brain” and slowly “gobbles memory and destroys life.” He wrote the book for himself in an effort to remember his life before he lost it forever, but it serves as a landmark piece of literature that helps the aging and their families understand the mind of the Alzheimer’s victim. The first step in this challenging time is for families to understand that their loved ones are not gone. They may appear to be gone, and their doctors may say that their minds are gone, but they are still there. All research indicates that though they may not respond to much and they cannot express themselves, they do feel. Above all, be good to yourself. This time is probably at least as difficult for you as it is for them.
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Tips for Getting Cozy in Assisted Living

Our assisted living facilities in California make like comfortable.While many of us dislike change, for an elderly person, change can be especially difficult. Dealing with changes in their body, family dynamics and the like is already a tough process, but the notion of leaving home – their home – is probably amongst the toughest transitions an elderly person may face. As the adult child of an elderly person, you may feel strongly that a move to assisted living is in the best interest of your loved one. For example, safety may have become an issue. However, your opinion may not be readily shared. Your loved one may be leaving a home where they’ve lived for decades – the birthplace of countless years of memories. Moving away is a significant loss, and even if health and safety concerns necessitate the change, it is best to remain sensitive to the emotions that come along with it. So, how can you create the best possible transition? The following are a few tips that may help make the assisted living facility feel a bit more like home. First, take an inventory of the personal effects your loved one feels strongly about. While this could include any number of items, from bed linens to a comfortable chair or a painting, having the comforts of home always makes a person feel better. If you are questioning the items you should take, simply ask your loved one which items they feel strongest about. Their answer can, sometimes, truly surprise you. In the midst of these conversations, you may learn about the significance of certain items they cherish (i.e., could be a family heirloom, an item received in their “courting” days, etc.). In any event, it is important you do not simply assume, but that you truly get this part right. The only way to know is to ask. Second, spruce up their new home with colors, treasures and other items that make the space feel like their own. Photo albums, pictures on the walls, window dressings, etc. are all inexpensive upgrades that can make a world of difference. If your loved one enjoys hosting others at home, sometimes the very simplest gestures (like a candy bowl or other treats) can make this new space feel more like the home they left behind. Third, begin calling the assisted living center their home. If the place feels like, and is referred to as, a temporary dwelling, your loved one may resist getting comfortable there. You don’t want the assisted living center to feel like a hotel or worse, a hospital – you want your loved one to embrace this new community and to enjoy being in thier new space. Fourth, speak with the staff about your loved one’s unique personality and how to engage them in this new community. This conversation may actually turn into a brainstorming session, but this will give the staff a better feel for your loved one and what resonates with them. Just like your parents did when you were younger, help them find a peer group with which they can relate. For example, if your parent has relatively little trouble moving around, make sure they meet others who don’t have major mobility issues. Positive social connections are important, and you are his or her best advocate for that. Finally, nurture and encourage – don’t force. Give your loved one a chance to adjust, but be careful that the transition isn’t taking too long or met with excessive resistance. Watch also for signs of depression, and take the appropriate steps to get help if he or she seems to be falling into a depressed state.  
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Making a Smooth Transition to Assisted Living

Entering assisted living is a life-changing decision that can cause a lot of stress and emotion that rivals other big events. Here are some tips to make the process a little easier. 1. Plan Ahead Gather the family together and decide who will handle what. Make a list of the necessary things that need to be done, decide who will do them, and when. If possible, include the senior in these discussions as much as possible. This will help ease the anxiety they will be feeling. Planning can also involve encouraging them to maintain a productive frame of mind and remain flexible. 2. Stay Positive What you’re doing is difficult, but remember that it’s the right thing. It’s natural to feel some guilt, but try to let it go. Take care of yourself, ask for help if you need it, and manage your own stress. Keep in mind that this process takes a toll on caregivers too, sometimes even when it goes well. You may be surprised to find that you are the one feeling forgotten if your loved one makes new friends quickly and doesn’t want to spend a lot of time with you. 3. Communicate Clearly About Tough Decisions Make sure everyone knows who will be doing what and who will be making decisions about financial and medical matters. Is it necessary for a family member to have Power of Attorney? Is a Living Will in place? It’s a good idea to have a conversation with your loved one’s lawyer and doctor about your options. These discussions may or may not seem necessary when entering assisted living, but having the conversation in advance can cut down on confusion during a future medical crisis. 4. Make Assisted Living Feel Like Home Personalizing the space can go a long way towards making it feel comfortable. Hang curtains, put decorations on the walls, and use a familiar quilt or bedspread. Beyond decorating, encourage your senior to become active and make friends in their new community. It’s the people who make a home. 5. Listen to Your Loved One Don’t forget what a difficult time this is. It can be extremely hard for seniors to give up some of the control they’ve had for all their adult lives. Honor their desires as much as you can and take their concerns seriously. Reassure them that you will be there if they need help and that they’re not being abandoned. It would be a good idea to set aside some of your time to be in their lives a little more during this period. At the same time, give them the space they need to adjust on their own – they can’t become fully comfortable with their new lives if you’re always there. Also understand that at this time, emotions over seemingly small issues can really be driven by something much larger. Sadness over a pair of socks that were lost in the wash could really be sadness about giving up a home and independence. Expect the adjustment to take a few months, and don’t try to rush the process. New homes take time to get used to.
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