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AvaLikeLava
member
CW: I don't know how to help my husband
AvaLikeLava
member
If you know us in real life, PLEASE do not mention this! I will DD by the end of the day.
S' father was diagnosed with Alzheimer's very recently. While we had known something wasn't "right" for quite some time, it wasn't until last week that the doctors finally handed down the word.
So, S being who he is, has been reading up on the disease. He's read a lot of the clinical literature, and has moved on to some books from people who share the personal side.
Last night in reading this S just broke down. I ran out of the bathroom, because I heard my husband sobbing: something that he's never done in our 10 years together.
It hurts to see him hurt like this. Because I can't help him. Because he can't help his family.
He's worried about what will become of his dad. He's worried about adding now THIS onto his mom's plate (she's already handling a 95+ yr old parent). He's worried about not being able to visit often, or long enough (they live on the east coast). He's worried that the boys will never get to know his dad, or worse, that his dad won't know who the boys are when he does get to see them. Just all in all, a bad deal.
I don't know how to help, or what to do. All I did last night was hold him and tell him we'll all get through this. I couldn't say that it will all be ok, because it won't. It will only get worse.
So what do I do? What does HE do? I'm really at a loss here.
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Re: CW: I don't know how to help my husband
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I don't have a lot of advice. I think what you did last night was the best thing you could do. It is so much to process and take in. I am glad he was able to get some of those emotions out.
I really like Michelle's ideas to help his mom (housekeeper, meals, flying back for medical meetings, etc).
Big hugs! Alzheimers is a terrible, terrible disease.
Oh no, I'm so SO sorry for you. And your husband. And your babies.
I agree with Michelle completely - support, reassurance, and whatever he needs.
I like the idea of recording stories - maybe writing letters and definitely some video - both ways. If you can skype - or heck, gmail video chat is a decent interface so everyone can see each other.
Lots of hugs. We're here for you.
I can't help on the DH perspective, but my father has Alzheimer's. Its a grieving process. You start grieving now, over the loss that is coming. And everytime something happens- a confusion, a lost item, a wrong phrase or word- you grieve a little more. That's what DH is probably going through.
For me, some things that help are talking about it and joking about it. My dad is very controlled/slow moving with meds, and when he does slip up, we laugh. I also plan- like I'm trying to get my folks to move from their heavy car-dependent house to something more walk-friendly. Or we are moving to the eastern suburbs in some part to be closer to my folks and brother (its only 40 min now, but..)
There are a lot of support groups around- I found a ton in the Berkeley area- never joined, but found them! It might help him/you to just be able to talk it through with others who understand and might have great advice. HUGS!
ps- I'm always available to talk more.
Oh, Ava. I am very sorry to hear about this to S's dad. It sucks.
As a person who saw her mom go through this disease (she was dx w/early onset Alzheimer's), the only thing I can suggest is to listen and offer to help. For example, when my dad was taking care of my mom full time, I offered to have someone come to the house to watch over my mom for a few hours while my dad had time to himself. And we hired a cleaning person to come 2x a month to help with the day to day stuff.
Also, I am not sure what coverage you have but there are some group therapy that talk about families who have loved ones going through Alzheimer's.
I know it is hard since his dad is on the East Coast. Can S take some time off under FMLA to take care of his dad? (I know the timing is not right since #2 is on his way!)
I know it is overwhelming and I hate to hear and see families go through this b/c in the end it is a sh!tty deal.
If there is anything I can do, please let me know. PM me if you want to talk more about this.
hugs to you and your family.
I'm sorry Ava. It sucks and I can only imagine his grief.
I think you totally did the right thing last night and I think Michelle's suggestions of concrete ways to help is totally right on. Allow him his grief, and then ask him what he fears most and tackle those one by one. Talking with his dad now about how sad you and DH are and letting him know that you hope he'll agree to do somethings for your boys will be tough but maybe couching it in terms of distance rather than his disease will help.
Huge Hugs!! I like other's comments of paying for help for them, housekeeper etc.
My heart goes out to your family, my late grandma had Alzheimer's and I've worked with dementia residents for 11 years - it's just so hard. It is a wonderful idea to get his memories written down now. It's a great project for the affected person to focus on after a diagnosis like this. Maybe he could write down the story of his life. I've read some of these and it's interesting because so much more comes out onto paper than often is said to family members. Putting together a scrapbook about his life will be helpful for your children to know more about him and is also a nice thing to look through with the person once their dementia is more progressed. Videos are also great, Alz type dementia will affects the way people speak and act so it will be nice for family to have a reminder. A family tree graph with pictures is something helpful to have on the wall for them to focus on as well as pictures of their youth - make sure to label the names and dates.
There has been some research lately that stress and confusion exacerbate the disease. So, routine, along with the available meds, can slow the process quite a bit. In essence anything that causes stress, like driving new places, working and traveling should just be out of the picture. Their life should be down scaled and simplified as soon as possible. Routines, schedules and menus should be written down and posted in a central location in the house. Items should be labeled, nothing should be hard to find. Meals should be at the same time and his wife needs to develop a routine for errands, etc. His closet should be simplified to basically a uniform, buy multiples of a favorite pant, similar shirts - choices also cause stress and confusion for someone with dementia. Something to keep in mind when visiting - make sure visits are well planned out and keep visits with kids shorter and when kiddos are more likely to be calmer.
Setting up a simplified home is a concrete action for family members to take. Alzheimer's is scary because there is so little we know and so little we can do but setting up an environment that your FIL can thrive in is something your DH could accomplish. Also, I'd recommend talking to a gerontologist as well as finding medical specialists. A gerontologist would be able to help with the social part of the disease and would know more about the helping environment.
First of all A, my thoughts are with your family. Yes, it will not be easy. I went through this with my grandpa and eventually dropped everything and moved in and helped my grandma (pre hubb, pre kids). I know that isn't feasible for everyone. I agree with Michelle, one of the best ways to help is to help his mom. For S, I would recommend a support group. While the support groups may be labeled for caregivers, I feel that S can get a lot out of it, considering he will be a distant caregiver. He can talk to others who have someone in their life with the condition, from that he can get a heads up on how to help his family.
The 36 Hour Day helped me a lot when I was going through the difficult situation. He may be interested in reading that.
Meanwhile to help FIL maybe you can make him a photo book with the family in it, labeled with names and relation and such. Think basic, such as you would with your newborn.
Reference your MIL's local caregivers network (there was a national one I used a lot and can not find, I will get it to you as soon as I can find it). The CN can help support MIL with both FIL and caring for her parents. Possibly even find a support network to help her juggle all her new responsibilities. Even giving her time to herself.
Please contact me if you have any questions or just a shoulder to cry on. I will be thinking about you and your family.
Ugh, A I am so incredibly sorry your family is going through this. I unfortunately know all too well what it is like to get this kind of diagnosis in the family. My grandfather was diagnosed with Alz and a couple forms of Dementia about 2 years ago and this last year he has drastically gone down hill...to the exten he might need to be placed in a home becuase his wife cannot care for him anymore.
It is devistating.
DH feels much the way you do in regards to me, he doesn't know how to help but here is what he has done that I have found unbelievably helpful.
He got the information, he informed himself on what the diagnosis is, what happens, the progression, so he could be there for me and know what is going on even when I didn't.
He also just has allowed me to talk about it when I need to, or go radio silent on the issue when I need to. He has made every consession to allow us to spend time with him and has done everything in his power to encourage me to close the gap on my relationship with him (it has been extremely tense over the last 6 years and it turns out it was because of this diagnosis, so it has beena journey the last few years in learning how to deal with this myself.)
If you ever want to talk off-line about this, please contact me. I am happy to share more details if you want them. This is such a hard position for you to be in because ultimately there is nothing but support you can lend...and trust me the support is the most needed thing in the world.
You are such a strong and wonderful wife for S, he is lucky and I know he knows it.
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EJ is growing up too fast!
Thank you all for the remarkable support and helpful suggestions.
My grandfather went through dementia for a few years before he passed last year. The person who died in the end was not my grandfather, and it was difficult to see him deteriorate. I know that Az will be 100x worse. I did the video-recording story with him several years prior, and I'm really glad I did. However, it was a very difficult thing to put together, both for me being behind the camera, and for my grandparents. It's just yet another thing that reminds you that you're not well.
S is very much of a problem solver (as am I... hence likely this post) and the feeling of not knowing what we can do is hard. I'm not thrilled with the idea of just throwing money at the problem, but living so far away, I realize it's one of the few things we can do.
I really like the idea of the list, and tackling it one bit at a time. Last night, I think he was just really overwhelmed by EVERYTHING that was going to happen, and he was just jumping from issue to issue.
I'm also looking for a support group for him, locally, and one for his mom back home. Since this just came up, and I've had a crazy morning, I haven't had a chance to look into organizations. If there are any you'd recommend, I'd appreciate it a great deal.
Thank you all again. This is going to suck!
Photo by Zemya Photography
My only thought he is doing what he needs to be doing grieving the loss of his father...because thats the awful areality of this disease. Also as far as what he can do for himself there is actually a test my Dad was telling me about that tells the likelyhood of a person getting it in the future, I asked why he would do that and he said there are loads of things (vitamins etc...) you can take to lessen the likelyhood of getting it.
Hugs for all of you
br
There actually was no test until just a few weeks ago. The test involves a spinal tap so it's really not something you want to do just to know. Also, now they are saying that the sample was too small to call it 100% accurate like they initial said. However, by the time symptoms are present they've already had Alz for a decade or so.
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Oh A, I am sorry. Alzheimer's disease is a tough thing for any family to go through. I had a great-uncle that had it and it was difficult watching him deteriorate over time. There are support groups, in addition just listen to him and let him know how sad you are about this occurring, maybe do that Video thing you did for your boys - have him talk to them or read them for the long term memories to last.
Hi Ava. I read this early this morning and have been looking for the right words all day... And I still don't think I have them.
First of all, I'm so sorry for this awful news and situation. I am also a "fixer", but in situations like this, there's nothing really you can 'fix'. It's something you have to go through and learn to adapt to each challenge.
I think you're doing what you can... Be there for him. Comfort him the way he likes to be comforted (hugs, listening, talking, doing kind deeds). Let him grieve and grieve with him. It's a process and you just have to be there for each other and the family and walk the road together, closer now than ever.
I think some of the suggestions about housekeeping, etc are great. Also, I highly recommend him making a trip sooner rather than later, with video camera and have his dad tell family stories of his childhood and their childhood. Document. How I wish I'd done that with my grandparents...
Eventually (probably not now or even for a while yet while the newness soaks in), you may be able to find humor in it. My grandma has pretty severe dementia now. And though it's not quite the same... It has some similarities. There have been many laughs that we've shared as a family about the forgetful things grandma does. It might sound insensitive (don't judge! *smiles*), but it helps ease some of the pain, stress and difficulty in her situation for those around her who are trying to help keep her safe. (You can't help others unless you somehow manage to keep your own sanity, right?)
All in all... It sucks. No two ways about it. I'm so sorry. We're all here for you...
I know I don't post here often, if ever, but my heart goes out to you. My DH has been in your shoes for the last 9 years.
My grandfather (who I was extremely close to) just passed away over Memorial Day weekend. He was diagnosed with alzheimer's 9 years ago, and coped with medication for quite a few years, and really only started to have major issues in the last 2-3 years. Fortunatley for us, he never had any issues with recognition or memory when called upon, his issues were more so in that he would revert to childlike behavior. He would throw tantrums, and literally lay on the floor if he didn't get his way. My now 91 year old grandmother was his main care provider up until a month before his death, when she moved him into a specialized care facility. It wasn't until then we learned that he had SEVERELY aggressive cancer. The alzheimer's sheilded him from the pain of the cancer, and the cancer took him before the alzheimer's did.
I can't tell you how many weekends and evenings after work I spent sitting at my grandparents house, just so my grandmother could have a break and talk to someone other than my grandfather. I know I was helping them both, but it was devestating to watch from a front row seat. I would come home and cry for hours, and unfortunatley there was nothing DH could do to console me. He couldn't tell me things would be better, or that it would all be okay, because it wasn't true. I watched the man I grew up adoring disapear right before my eyes. The only thing DH could do for me was hold me, tell me he loved me, and remind me to enjoy every second we had left with Poppa. And that was more than I ever could have asked for. My grandmother on my mom's side was also diagnosed with alzheimer's about 4 years ago, so we're ramping up to take the ride again.
What your husband needs now is you, and your strength. He needs a shoulder to lean on and someone to just listen. You can't fix this for him, and he can't fix it either. I know the distance makes it harder, but try to remember to enjoy what is left. This disease affects all of it's victims differently, but they are making HUGE strides with medication these days. Hopefully they've caught it early enough that he can be treated and still be an active man for some time to come (my Poppa survived nearly 10 years after his diagnosis). Tell your FIL you love him every chance you get, and if there's anything your DH feels like needs to be said, tell him not to wait. He doesn't have to say goodbye, but he wouldn't want to leave anything left unsaid either.
Also, if you can, talk to him about limiting the amount of research he does on the disease. It'll make you crazy to have too much information. I can't tell you how many days I spent sick to my stomach after reading that if one of your parents has it, you have a 50% chance of falling victim as well. My parents each have a 50% chance as they each have a parent with alzheimer's, so I was convince that they were both going to get it, and I was doomed.
Again, my thoughts and prayers go out to you. I'm sorry this turned into such a novel when it was supposed to be about you. I just wanted you to know you're not alone. The role of the support person is hard, but just being there for your DH right now is the greatest thing you can do for him.
waiting on our little monster
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I don't know that there is anything else that either one of you can do except be there to support each other. Perhaps you can explore to what extent cord blood can be used - I think I saw that it can possibly help with Alzheimer's as well with grandparents of the child. The advice that I received from doctors when placed in a similar situation was to help the person (S's dad) accept the situation and learn what steps the people around them can take now to help deal with the symptoms. For example, encourage him to write notes down so that it becomes a habit. Perhaps you could also encourage him to write his memoirs? And think positively - there have been great strides in research and there will continue to be more progress made in the years to come. You may be surprised that sometimes these diseases are very slow to progress. Will keep you and your family in my thoughts and prayers.