In June of this year, I attended a conference and met two women who run a program of support for children who are either sole caregivers or thrust into the role of helping care for a parent. Copy and paste this link for the blog: http://www.thealzheimerspouse.com/Helpforkidsandteens.htm
I know there are many of you dealing with spouses who have Young Onset AD, and still have children at home, some of them quite young. The emotional toll of living with, trying to understand the illness, and in many cases, helping with the care, can be overwhelming for children and teens.
The women highlighted in the blog want to write an article for the website, but need to know what you would like to know and what kind of help you would like to have for your children. Please post ideas, opinions, and comments here, so I can pass them on.
I don't even know what I would ask. Our daughter is 14 and seems to be doing well with all this, up until last night. At her church youth group meeting they were watching a movie about a child with cancer. Most of the boys were cutting up and laughing. It made my daughter mad, she told them they were very immature. As she was telling me this she started crying, she never cries. I know this was hitting to close to home, and I tried to get her to talk and she would not open up to me. I think my keeping it all inside may be hurting her. Maybe we both need a good cry. Any help for my sweet little girl would be great, I wish I knew what was best to do for her.
Sometimes just that special kind of hug that lets her know she is safe with you and that you understand that she is hurting, not in the same way you are, but that she too feels the losses each day. I am sort of in that realm with grown stepdaughters, whose mother shows signs of ALZ...knowing she is on Aricpet and Namenda is telling. While my mom died of this disease, I cannot fathom the fears they surely harbor with this disease affecting both parents and what it could mean for them. Because they are adults I do try to get them to understand the ramifications for the issues of care for their mother IF her husband is not on the bandwagon. At the same time I let them know I am aware of how difficult this is for them. And as an orphan myself, I have no clue what is in my genetic bag of tricks so I do understand their apprehensions. With regard to the daughter, it may take your saying something to the effect that you understand she has fears, though perhaps not altogether the same as yours.. And let her know you are proud of her for the strength she does show especially at the event where she told those kids to shape up. She is more mature than her years and she is special. Sometimes all we can do is just be present. And if she starts to withdraw, perhaps a counselor or therapist might be helpful. Give her a hug from all of us.
My kids are 17 and 20 but are away at school. One question I struggle with is how much to tell them if they don't ask, particularly the older one who is very much off in his own world. We aren't yet to the point where I am looking to them to take responsibilities for their father; he can still manage on his own. One question I have right now is whether to spend money on a trip someplace warm after Christmas. I find traveling with DH such a strain, but maybe this would be a last chance to make family memories.
My children were adults. To be honest, I was so wrapped up in MY loss that I never completely understood their loss of their father. It was one of those 'moments' in life when my adult son opened up after DH had been ill for some time that I clearly saw my son's loss of his father and their closeness, all his father had taught him, all the things they did together. We were heavy into auto racing and there were all those yrs under and over cars, working together on motors, the discussions, the drawings, the pit stops, hours pouring over books, machining parts--on and on. I think my children were protecting me and kept their fears and losses to themselves, altho I know they confided in each other. I am forever grateful that it did not affect my children when they were little, altho it did have a profound effect on our g'sons. It is heartbreaking for young children to lose a parent, just hearbreaking. There's no substitute for such a loss.
I have 3 sons – a 22 year old who lives away from home, a 21 year old who is a senior away at college, and a 15 year old at home. The oldest is in absolute denial - will NOT discuss his father's condition. I think the middle son is most afraid of inheriting a gene and experiencing the same fate.
The youngest...my heart goes out to him. He lives with it, he sees it, he can’t pretend it's not happening, or that it won't affect him. Sometimes my heart breaks when he "tells it like it is." While he has not specifically asked, I am sure he would like to know how long this is going to last. He might like to know specifically what is going to happen to his father, rather than experiencing the shock of each new loss. I think it would be wonderful if he had a safe place, like this one, where he could talk with other teens who are experiencing the same sad circumstances. It would be great for him to know he is not alone. My guess is he doesn’t talk to his friends at all about it. You know teenage boys – sports & girls & more sports!
My youngest son was early in high school when my DH symptoms increased to the point that we definitely knew something was wrong. Unfortunately, unprovoked, unreasonable rages at our son was among the first symptoms. My son admitted to me recently (he is 20 now) that he hated is father as a teenager. I managed to get my DH to leave him alone just before his senior year in HS (then I became the primary target of his rage). When discussing my DH illness with my son recently I asked my son if he noticed an improvement in his relationship with his father his senior year in HS and he said yes. I asked him if he knew why and he said, "I thought I grew up". So all the time my son was internalizing his father's behavior as his own fault. I knew their relationship improved because I got my DH to stop verbally attacking him but my son just thought, at the time, that his behavior improved so his dad was no longer mad. This was pre MRI and recognizing we had a real problem but I think this is an area that kids need help with, even teenagers, that the behavior of the ill parent is not their fault.
Mine are now 20-25 and the boys get along well with their father. Their relationships seem a bit superficial (they still chat sports and other small talk) so they don't seem troubled by his illness. On the other hand, my daughter had a wonderful relationship with her father and since his behavior is very frontal lobe, self centered, poor logic and reasoning, trouble following conversation, etc, their relationship is shattered and it breaks her heart. What they had is gone and she can't seem to find a common ground with him to forge a new relationship with the new him. So I think changing relationships and accepting the loss of a previously good relationship is a potential other topic.
I stopped by the church office today and talked with our youth leader. We talked about some type of support group for our youth. We have several in our church who have ill parents or siblings. Our youth leader's father has AD and as an adult she understands some of what my daughter is going through. I am not sure where this will lead, but at least we have talked about it and that is a start.
There IS a safe place for teens to discuss their problems and concerns about living with a parent with AD. Log onto my home page - www.thealzheimerspouse.com - and look on the left side where all the resources are. Scroll down to AFA Teens, a website of support and information for teens dealing with AD.
Im my case my daughters were mid teens when DH was diagnosed. I think the hardest part for them was maintaining a "father" relationship as they began to help me care for him. Maybe it is the "female" in them but keeping the respect of father as they had to start saying "don't do that Dad you will hurt your self"' or let me help you find that" it really affects the relationship. My youngest daughter that just turned 18 in June finnaly revealed to me that she never thought she could reveal her own struggles to me becasue she saw how overwhelmed I was already. That made me so sad as a mother because I just thought she was the strong one. She told me that the petty problems the other teenage girls had a school the 'drama" made her so angry because she was dealing with such serious stuff, it made hard for her to maintain friendships. This disease attacks relationships from so many angles.... Before the DH diagnosis my older sons relationship was severed with DH do to the lack of communitcation and emotional interaction and support. DH is his Stepfather. When I told him of the diagnosis and I explained all the things it affects, my son (now 26) said it changed everything for him, about what he thought about his childhood. DH clearly had FTD and ALZ many years ago. Thanks again Joan for this venue.
These are heartbreaking stories: my heart goes out to all of you who have dealt, or are dealing, with AD and youngsters who are losing a parent. My sons took it hard enough but they were in their late 30s.
I have 2 daughters ages 11 and 14. My 14 year old is moderately cognitively impaired with lots of medical complications as a result of a chromosone abnormality called trisomy 13. My 11 year old is both the youngest in the family and the big sister at the same time. My husband was diagnosed with Alzheimers 2 years ago at age 46 and showed significant signs for at least 2-3 years prior while we went through the process to get diagnosed. The hardest part for my 11 year old seems to be trying to respect the fact that her dad is an adult and a father and yet she has to tell him how to do things and care for him. She also has difficulty comprehending the fact the her dad goes to the doctor, doesn't seem sick, takes his medicine but is not getting better. Sometimes she will ask "when will dad be able to drive me to school again?," etc. We talk alot about how this is not going to get better and it will continue to get worse but she really have a concept of the full scope of the disease. She also has (we all do) difficulty finding activities to engage with him. Her favorite is just hitting a balloon around. My husband won't play games or watch TV and gets aggrevated when the kids want to be silly and act like kids. Very heart-breaking to watch the relationships of your children and their father disappear. I guess I would like to know how far do I share info about what is still to come with this disease and how it will end with an 11 year old. Right now I'm just waiting for her to ask the questions and only give the info that she is asking for.
My little grandsons, ages 7 and 11, live with us and since their Papa's death they have both been on small dose of antidepressants and in therapy. He was their only father figure. They really miss him. It is so hard.
My husband declined for 14 years, rapidly in his last three years--pretty much since my son was born (now 16). In the early years, they had a sweet relationship--my son would wear a little kid sized tool belt when his dad wore a grownup one and they would work in the workshop together. My son had a little lawn mowr and would "help" mow the lawn when his dad took out the big lawnmower. My husband taught him to ride a bike. There are a few good memories and fortunately lots of pictures. I always tried to be honest and open with my child as much as was appropriate for his age. Not the stuff about me and how at times I felt like I was drowning and had no life, but more the practical, factual information. At first, I wondered should I involve him, but then I thought--this is part of life, caring for those you love, advocating for them. I wanted my son to grow up to be caring and not run from responsibility and difficulties and see that there are ways to help others, that you had to be a fighter. I did not want him overprotected and then later unprepared for what life may hand him. I did not want him to be self-centered or spoiled. He helped care for his dad, held his hand on walks, they listened to music together, but as he grew up, there was less and less they could find in common. My son felt he could tell me his honest feelings, and I told him his feelings were ok--not right or wrong. He told me he loved his father, but was greatly relieved when he finally died, as it was a burden and did not allow for us to do many activities. As a result of his experiences with his dad, my son is a loving and caring person. He is very aware and grateful for the good in people, because we met so many wonderful people who offered friendship or useful information or shared their own stories as we lived with dementia. He is also very aware of the shortcomings of doctors and the medical professions and the healthcare system. My son takes very little for granted and has a lot of patience and tolerance as a result of what we experienced. There is good that can come out of such a sad and difficult experience for children in that they will be better parents, spouses, and have a closer relationship with their surviving parent. My son lost a lot--he did not have the same father-son experiences and relationship that many other boys have, so I tried hard to find wonderful experiences locally with great male role models, and it worked. But he also gained a lot.
Barbara, what a wonderful tribute to you, his mother, for raising your son in this caring and compassionate way. I'm sure you are very proud of him. Here's to you!!
Thanks, Vickie--what a nice thing to say. I must be honest and say I was often NOT a paragon during all the years of my husband's care, but I worked hard at trying to give my son as many positive experiences as I could, even if it meant my husband was ignored at times. There were times I said things and did things that overwhelm me with guilt today. My heart goes out to jlj who is dealing with two two extremely needy people and a second daughter who is probably overwhelmed by responsibilities and her own mixed feelings. When your spouse is young, it seems like you will be caring for them forever and no end in sight. It can be overwhelming. Jlj--I hope you live in a busy suburb or urban area where there are resources available to help you. I was lucky enough to put my husband in a day program his last year and a half, even though he was much younger than most of the other participants. He could not manage to last the whole day--I think it was somewhat boring for him and also he had a lot more energy and would get very restless. But it finally gave me a little relief and it gave my son relief. I look back now and think the biggest mistake I made was giving up my job to take care of him. If I had kept my job, I could have put him in an assisted living place eventually and his disability would have covered the costs, while I would not have lost all my benefits and my retirement. I think he would have been able to adjust when he was still functioning at a higher level and we could visit him and even sleep there with him at times and take him out on trips. Once a person needs so much hands-on care and is in danger of falling, no place will accept them unless they are heavily drugged and strapped in--too awful to contemplate. If you haven't already done this, I would also recommend getting advice from a local Alzheimer's/Dementia chapter or hospice chapter for support groups for kids and referrals for therapists for kids. Even with a parent with dementia still living, a child has experienced loss. The support groups can be very helpful for caregivers of spouses and family members with dementia and many have support groups for children, too. Please continue to write and let me know how things progress.
What would I like to see in an article about children/teens living with a parent who has dementia? The so subtle and gradual erosion of the parent/child or parent/teen relationship. It can fade in and out during early stages. Parent can be with it one moment or one day and just not get it a bit later on. Hard for children/youth to process. The loss of that relationship. How it impacts social relations and extended family events. How family activities sometimes end up being scaled down to keep things calmer and on a more even keel for the parent with dementia challenges. Vacation plans can be affected . . . parent with early onset may experience fatigue and/or more confusion being away from home and traveling so family doesn't get to do the same memory making holidays they used to. Finances may be tighter if parent has had to stop work. Less money for extras.
Being a child or youth in a two parent family yet really only one parent is functioning. I describe it as being a single parent in a two parent relationship. Yet I'm not really a single parent and can't function totally as a single parent because the other parent is still a part of the family . . . yet is becoming more handicapped in the area of parenting (and relating to others too). The latter can be an embarrassment to the child/teen who may become reluctant to invite friends over. How does a teen, for example, explain to teammates, why their one parent doesn't show up often for games and when the parent does attend, can't follow the game and interacts with other parents either minimally or on a surface level or makes random comments that don't relate to the conversation? Dealing with the repetitive questions and the forgetfulness. Not being able to discuss things with that parent on a deeper level . . . And from my perspective, having to make a lot of parenting decisions on my own. Communicating support and acceptance to the child/youth when other parent is out of earshot (it was invaluable at times that my hubby often chose to stay home and I drove teens to activities . . . being in car was good time to talk together . . . although driving was one more task I had to take on).
The time in the car is the best time for me and my daughter. We get our alone time to talk. She tries to understand what is going on, I told her that I have trouble understanding it all. I to feel like a single mother, have for years.
Thank you for all of your comments and suggestions. Please keep them coming. I am going to share them with Cristy and Karen of the Caregiving Youth Project. Hopefully, they will come up with some good ideas for you. This is such and important topic.
Please don't forget to check my home page - www.thealzheimerspouse.com - and look on the left side for AFA Teens. It may be a site that will be helpful to your children and teens.
Here's a link to a Toronto Globe and Mail news story about dementia from the perspective of children and youth-----you'll need to cut and paste to read the article. http://www.theglobeandmail.com/life/health/dementia/a-forgotten-piece-of-the-family-picture/article1721778/ (This article is part of a series that the newspaper did last week).