My wife is 52 and was diagnosed with Early Onset Alzheimer's earlier this year...

[Radam]

I have a 10 year old son who is starting to see the effects of my wife's Alzheimer's, and it is very sad for him (and me to see him having to deal with this). He came to me crying yesterday saying, "I hate Alzheimer's, I hate it!" My wife called one of his friends the wrong name (and we have known them for the past 5 years). My son was embarrassed and upset. He thinks that his friends are laughing at him because of this. He didn't want to walk with his mom from the bus back home after this happened. I spoke with him about it and said that mom doesn't do it on purpose, and doesn't mean to embarrass you, she doesn't even know she is doing it. It's hard to go through this with him, as he shouldn't have to deal with it.
However, it's our reality, so I just told him that we cannot alienate mom and need to just love on her more. I also said that we need to stand up for her if anyone says anything that is not nice. We have to be flexible and understand that these things may happen from time to time. It just breaks my heart knowing this disease gets worse over time. We can't have important discussions anymore, and it's hard to talk about the future. I am also 52 and a First grade teacher. My wife is no longer working, so things are tight. I am on all day with First graders, and then back on when I get home to get dinner and whatever else needs to be handled. This is difficult. Thanks for listening.

 

[Sarahkb]

Hi just wanted to say you are not alone and I understand how difficult and exhausting it can be. My husband is 50 and we have a 12 and 7 year old. I work part time. It is so hard. Just wanted to reach out. I cope by not thinking too far ahead.

 

[northumbrian_k]

Hi @Radam and welcome to Dementia Support Forum our friendly and helpful community. I am so sorry to read about your wife and the effect that this this is having on you and your son. My wife was in her 70s when her Alzheimer's Disease was diagnosed, which was hard enough. To deal with it at such a young age sounds truly awful. I hope that now you have found this site you can get some solace from sharing with others who understand.

 

[Carmenjane]

There are books specifically written to help children understand dementia, perhaps you could find something suitable for your son. We all have to learn that however much you love somebody you can’t help feeling angry with them and embarrassed sometimes - hard enough for adults never mind children.

 

[SeaSwallow]

Hello @Radam and welcome from me also. Because you mentioned that you are a grade teacher I am assuming that you live in the US. I don’t know what help is available for families there but you might find it useful to contact the Alzheimer’s Association for advice (sorry but I cannot create a link at present as I am on my mobile).
Keep posting here if you have any questions or just need advice, our members have a vast experience of dementia.

 

[Izzy]

Welcome to the forum @Radam.

This is so incredibly sad for you and your family, especially your little boy. I’m wondering if you’re a teacher at the same school he attends. If you haven’t already done so I’d make sure that you make his teacher and the principal of the school aware of what he’s going through. They need to be able to support him if he needs support. I’m sure they would do this in a very thoughtful and subtle way.

Someone mentioned books which might be helpful. I’ll put a link to a list of books in a minute. I think most books seem to focus on grandparents who have dementia but there might be something useful there.

@SeaSwallow mentioned the Alzheimer’s Society. Here’s a link where you might find a local association - I too am assuming that you’re in USA. Please keep posting here too.

Help and Support

Alzheimer's and dementia help and support – find information and resources for those living with or caring for someone with Alzheimer's or other dementia.

www.alz.org

 

[Izzy]

Here are some links to books for children.

International Children's Book Day | Alzheimer Scotland

April 2 marks International Children's Book day. We are sharing a range of books for children that aim to increase overall understanding of dementia and how they can help support people living with condition.

www.alzscot.org

Search | Alzheimer's Society

www.alzheimers.org.uk

This Australian website might also be of help -

Dementia Australia - Dementia in My family

 

[leny connery]

There are books specifically written to help children understand dementia, perhaps you could find something suitable for your son. We all have to learn that however much you love somebody you can’t help feeling angry with them and embarrassed sometimes - hard enough for adults never mind children.

I second this. There are books written for kids regarding dementia. It is hard enough for adult partners to understand, let alone a child, and his mum,. Myg heart hoes out to you all

 

[Kevinl]

I entirely sympathize with the poster, I had to pack our youngest (then 16) off to live with his big sister as the whole situation had become so intolerable for him at home here when my wife/his mum got early onset AZ.
I can't imagine what it's like with a 10 year old in the house or what they're going through, for me that was over 10 years ago, and it still hurts now.
K

 

[Lauren22]

I have a 10 year old son who is starting to see the effects of my wife's Alzheimer's, and it is very sad for him (and me to see him having to deal with this). He came to me crying yesterday saying, "I hate Alzheimer's, I hate it!" My wife called one of his friends the wrong name (and we have known them for the past 5 years). My son was embarrassed and upset. He thinks that his friends are laughing at him because of this. He didn't want to walk with his mom from the bus back home after this happened. I spoke with him about it and said that mom doesn't do it on purpose, and doesn't mean to embarrass you, she doesn't even know she is doing it. It's hard to go through this with him, as he shouldn't have to deal with it.
However, it's our reality, so I just told him that we cannot alienate mom and need to just love on her more. I also said that we need to stand up for her if anyone says anything that is not nice. We have to be flexible and understand that these things may happen from time to time. It just breaks my heart knowing this disease gets worse over time. We can't have important discussions anymore, and it's hard to talk about the future. I am also 52 and a First grade teacher. My wife is no longer working, so things are tight. I am on all day with First graders, and then back on when I get home to get dinner and whatever else needs to be handled. This is difficult. Thanks for listening.

Hi @Radam it sounds like you are doing an amazing job. My husband is 38 with Alzheimer’s and we have 3 children 18,13 and 6 so know how difficult it can be to try and explain to children about the challenges that come with a parent with Alzheimer’s. It sounds like you are doing a great job, I just explain to my children that regardless of what is happening with their dad I am here for them it is and they can tell me exactly how they feel and no emotion is wrong but we need to be open so we can discuss it and find ways to help which I’m sure your already doing anyway 😊. It is exceptionally hard just make sure to be kind to yourself as well.

 

[Sarahkb]

I entirely sympathize with the poster, I had to pack our youngest (then 16) off to live with his big sister as the whole situation had become so intolerable for him at home here when my wife/his mum got early onset AZ.
I can't imagine what it's like with a 10 year old in the house or what they're going through, for me that was over 10 years ago, and it still hurts now.
K

Hi hope you don’t mind me jumping in and asking how did you know when it was just no longer in your child’s best interests to stay at home? I have a 7 and 12 year old, their dad is 50 and has Frontotemporal. It is becoming incredibly difficult at home and quite toxic and stressful atmosphere because of my exhaustion and his intense support needs. I am at the point of knowing full time residential care should be a serious option but I just can’t bring myself to do it.

 

[canary]

how did you know when it was just no longer in your child’s best interests to stay at home?

If you are at the stage of asking, then IMO, you have probably already reached it.
Your children are so young that I honestly think you will have to prioritise them above your husband.

 

[Radam]

Thank you to everyone for your thoughtful comments, advice, and kind words. I apologize for not responding earlier, but I am still learning how to navigate this sight and didn't save it before. I only got back on because the news letter came to my inbox. I have saved it to my favorites.
My son is handling things quite well for the time being and my wife is hanging in there. I did tell my son that things might get rough, but he can always tell me anything, good things and the not so good things. That I am here for him always and we will get through this together.
Some of the stories I have read here are much harder than what my wife is currently going through, and I appreciate you sharing; I have total empathy for you all. It's hard to read some of these, as it may be in my future as well. I don't want to attend an in-person group, but I do like having this online forum to see how others are handling their loved ones with this awful disease. Thank you very much.

 

[Radam]

Hi just wanted to say you are not alone and I understand how difficult and exhausting it can be. My husband is 50 and we have a 12 and 7 year old. I work part time. It is so hard. Just wanted to reach out. I cope by not thinking too far ahead.

 

[Radam]

Hi Sarah,
Thank you for saying hello. Wow, you have a big pack to carry. Does your husband still work? My wife does not, so it's just my teacher income. She does get a little disability money (my son too) so that helps a bit, but I also carry a heavy pack. I make all the decisions and have to be on my game at all times. We travelled to Europe last year for a month (thanks to my family) and went to Hawaii last November to make memories for my son to carry with him. I think these things are important to do as a family even though the cost might be a bit tough to handle. The memories are more important for me. This helps my mental state, and helps my wife not worry so much. I also love seeing my wife and son laugh and have a great time together. We take things day to day, and like you I find that the best way to deal. Thanks for sharing!

 

[Sarahkb]

Hi no my husband hasn’t been able to work for 2 years. He needs full support now. Just me working 4 days week (too much) topped up with benefits. I also make sure we hss as be loads of happy memories like you say, so important. Sadly, our holidays are just myself snd kids but so much fun despite the sadness of daddy not being able to come anymore. Just so important I don’t miss out on their best years snd they don’t either but all very hard.

 

[leny connery]

dear Sarah, can only send you tight hugs and love. 50 is so young to be struck with dementia. I do not know what to say, just praying for you, for all carers out there who are on their knees. God give us strength and succour.