Hello and Welcome to Caring Central!

I'm new to this site so I'll take it slow. We need a cure or a Med to slow things down even more . I'm am dealing with Early Onset and so is my entire husbands family . But I would like to also share the lighter side . The laughs and conflicted but funny moments while going through this tunnel of confusion of what is now & what used to be. Example --After telling someone in frount of my husband he is so god at golf he once had a hole in one, he strecthed out his arm with the flat of his hand to my forhead and said "you should have had a V-8 .  The young man who was a cashier just smiled as I did and shrugged our shoulders. I find people are pretty excepting and understanding . He can be very funny. I love him dearly.  

Hello and welcome!  I'm really glad you joined Caring's community!

You mentioned early onset.  I'm assuming it's Alzheimer's Disease?  You may also want to check out our Living with Alzheimer's group.

Missy,

           Yes, Early Onset Alzheimer's Disease refer's to people who are diagnosed before age 65. My husband & his sister and a brother who died at  age 63 all where in their 50's when diagnosed . It is a rarer form .  I will check out  the living with Alzheimer's group . Thanks

Love torn,

Your husband sounds lucky to have you. And, we in the Caring.com groups are lucky to have you too.  Glad you found us.

It's not easy to see the lighter side, so I'm sure others will agree with me that your sharing here is an inspiration.

Do you have any suggestions for how to stay up to date on research into a cure? Or, are there important things we all can do to support people caring for loved ones with Early Onset Alzheimer's?

Kirby F.

              Thanks for your inspiration and reply. I stay up to date with the research by Googleing almost everyday . Newest discovies and or cures for Alzheimer's and Early Onset . Also I ask my husband's Neruologist what is new . In fact there is a 3rd phrase  study of a vaccine that they are looking at late  this Spring . My husband is on the list to be screened , But I will have to read all the paperwork to see how safe it is for him , etc. An important sugestion for people who are caring for loved ones with early onset  1. deal with the finacial and legal (wills, power of attorney,Trust, Health care Proxy etc.) 2. Always remember who the person was before but love them for who they are in that moment . 3. Take care of yourself( you can't take care of them if you hurt or are sick ). Get out when you can and do the things you always loved to do. 4. Get friends and family to help . (even and hour a month to start)  Then every week . 5. Keep the person as independent for as long as possible .(remember quality of life is important for all of us). 6. Laugh and smile at them often and keep a good sence of humor . 7. Keep close touch with your family children ,keep active with all the things you loved to do as long as you can, sports dinners , movies, cards , Music is especially comforting and fun for both . I think that  is all for now . Love torn

Hi. I'm new to this site. I just found out a week ago that my boyfriend (28yrs) has osteosarcoma stage 3. We are both having alot of emotions good and bad. I work a 12hr swing shift and his job just let him go. It's really stressful not having any help and he's getting ready for intensive chemo. Is there anyone out there that can help me ease my mind. I'm scared.

Hi Tonya,

          That is so young to have to go though something like this but HE Does also have that on his side( Being young) . Does he have friends and family that can be helpful and suportive? Play cards with him and maybe take him to his apiontments.Sometimes the Nurses will give you information on volunteer services too. Maybe you can ask them when he goes for Chemo.  Also why did he lose his job? If it was because he took time off because of his illness I would think that was discrimination . I would look into that . He could be entitled  to short term didability or  other monies.  I would ask his MD lots of questions and google . Knowledge I find can be helpful. My heart goes out to the two of you . Please keep us up to date . My prayers are with you .   Love, torn 

love Tom, your thoughts were really great and I'm so happy you took the time to share them with us.  I know others dealing with Alzheimer's will really take them to heart.

Tonya, welcome to Caring's groups.  I'm really glad you joined us, though I'm sorry about your boyfriend's diagnosis.  I'm hopeful that his young age is on his side. 

One thing I want to encourage you to do is get as much information as possible from your boyfriend's doctors.  You may also find it helpful to do some internet research so that you can walk into appointments ready with a list of questions.  Have you looked into support groups in your area?  That may be an huge source of information for you.

Please keep us posted on how things are going for you and your boyfriend.  I'll be thinking about you.

Hello, I am new to this site.  I am looking for some insight and advice.  i have recently begun as a caregiver for an 81 year old lady with alzheimers.  I  believe she has had it for about 4 to 5 years now,  This is a new experience for me.  Her daughter said she used to be such a vibrant, outgoing, busy woman and now she is the complete opposite.  She is very shy and cautious and sometimes irritable.  We have some good days and some days where she won't come out of her room and wants to be left alone.  I would like some input  as to finding a way how to make her more comfortable around me. I would also like to know, do I just say "ok this is what  we are going to do, like get a bath or do a pedicure"  things I can do to help reieve some of the chores her daughter won't have to do when she gets home from work,  or do I just leave her be when she is in one of her "want to be alone" moods.  Help!

Hi Star!  Welcome to Caring's groups!  I'm glad you posted!

I just happened to see that you also posted in our Alzheimer's group.  I'm betting you'll get some great responses there!

Hi Star,

  You sound like a wonderful empathatic  compasionate person. I would start by asking her daughter what sort of things she used to like to do and what sort of things she is still able to do. Like going to lunch , getting her hair done , what kind of music she likes listening too. Even if she never liked listening to music in the past now she might love too. She might also be depressed and if she isn't on a med for that she might need to be evaluated for one. She might be encouraged to get up and bath if she knows she has something to do or some place to go. Maybe she would even like to help with house work .Like sweeping the floor or dusting ,putting dishes away or help preparing lunch. Planting flowers inside or out  would be nice with your help too. Family DVD's or video's or favorite movies if she can't leave the house also. I hope these sugestions will help and good luck to you . Love, Torn 

Thank you for the advice and suggestions.  I will definetly take them to heart. I am hoping to try and make her life a little bit better if I can.  When she is in a good mood, she does enjoy listening to music, in fact, I told her I would bring some Josh Groban and some CD's with me the next time I came.  I also suggested she and I planting flowers in a garden area right outside the kitchen window where we sit quite frequently watching the birds.  She loves watching the birds, her daughter has lots of bird feeders which she does love watching.  Last week i did get her to venture out and took her for a ride to my house to see my chickens and peeps, she truly liked that, she grew up on a farm.  It is just the days that she won't leave her room and wants nothing to do with anyone that is my dilemma.  And what to do as the icebreaker to start to help more with the physical care to relieve some of the duties from her daughter.  Perhaps it will just take more time, it has only been a few weeks.

Hi Star,

I am glad I was of some help .

               It sounds like you understand her pretty good. I would sugest on the days that she doesn't want to get out of bed ,she might just be tired and need to  sleep a few more hours then play the music in her room to see if she wakes up then if it was me with my husband I would start dancing and try to make him smile and laugh . While she is sleeping maybe you could do a wash or make lunch , or house work that is needed .Then the bath and what ever and maybe sunshine  . A lounge chair on a porch with music so she can watch the birds  might make her happy.Try not to show you are afraid to help with those tasks and just start to do it . You'll soon know if she is resistful or  receptive or  not and you'll have to play that by ear. .  Reading her  short stories or or you can find recorded books at the library also if she was a great book reader. Use colorful plates when it is meal time .Red seems to be best for people with Alzheimer's . It sounds like you certainly have the right Idea I love Josh Groban . Good luck and hang in there , Love torn

Hello love torn,

    You seem to know just the right advice.  Sounds great.  I work tomorrow and depending on what kind of mood she is in, I will have some new ideas to work with.  I guess you are right, you just have to try it and if she resists the idea, don't force it, just try it again and maybe it will go over better the next time.  I will need to learn to not take it personally and remember it is her disease talking.  I watched a video on youtube one of the members here suggested, it featured a family therapist who has  specialized in alzheimers for past many yrs, some helpful advice there as well. I have been helping with making dinner and baking for her daughter already and organizing her kitchen cupboards some, with her ok.  Thanks for your help, it is greatly appreciated.

Hello again,

                  Just checking in to say I'm still here . My sister-in -Law who is 59 seems to be getting worse and I know it is what it is but I can see her brother , my husband 's near future in her actions. We took a ride to the Lake yesterday with another sibling of theirs and husband and we all had a great day . Lunch afterwards was  good too. When we dropped her off home with her husband she wanted to come home with us and it took a good ten minuets of me trying to explain  we would see her again another day and she lived there with her husband .  She even tried to force her way into the car and was yelling "I don't want to stay here ",and much more. As heart breaking as it is we have to be firm with her . If we don't it will make it much harder each time we go somewhere with her or see her for both her and her husband. She can be very sweet and funny too and we ,I love being with her . At lunch she started to sing "The Star Spangle Baner" after singing the whole song very well I might add I asked her is there a flag you saw on the wall ,as I llooked around the walls of the dinner . She said no with a smile I just felt like it.  Very nice we all said and went on eating.  from,  Love Torn

Hello again love torn,

  I had two pretty good days this past.  Tues, my lady stayed with me almost the whole day which is quite unusual.  We enjoyed the sunny day, from inside, watched the birds, and hummed along to the music a good part of the day.   We baked some cookies.  She received a bird book for mother's day which we both enjoyed.  As I had promised I brought some new cd's with me on Wed.  She woke herself up early, went to the bathroom, saw that I was downstairs and actually came down to greet me.  Usually, she goes back to her room and I have to try and coax her to come and join me downstairs.  She smiled and gave me a couple of hugs, I felft she was actually a little happy to see me.  I felt maybe we were getting somewhere finally.  Such little things really make you feel like such progress.  But the weather wasn't very pleasant today, so she didn't spend a whole lot of time with me.  She did enjoy the new music and hummed along with me for a little while though.  i will keep trying.  

Star,

         Wow what great progress you have made with your lady . She really sounds like she looks forward to your visit's  with her.Fantastic. My sister-in-law is coming over today while her husband goes to his MD apiontment . I plan to cut and color her hair for her if she let's me . She has in the past but things have changed somewhat . Love Torn

Hello Love Torn,

    How did things go with your sister--in-law?  Did she cooperate with the haircut and color?  I never know what to expect when I go to work?  I mentioned I had two good days, the next day I went, the weather was rainy and gloomy and that was my lady's disposition.  She was not happy.  She even refused to take her medication, said she "doesn't take medicine",  get it out of here, she didn't want it and wasnt' going to take it.  Not quite in those words.  I tried convincing her and cajoling her into taking them to no avail. I felt truly defeated.  She stayed in her room all day, so I brought food and snacks all day long,  I also did bring some more cds, so I played music for her, started humming along and once or twice caught her humming along.  But for the most part, I couldn't make her smile or bring her out of her funk.  I pray for the sunshine.  She is so much better and happier on those days.  I will try and coax her outside maybe for a day trip to see my chicken and peeps.  We did that one other time a couple of weeks ago, she seemed to enjoy it.  She used to live on a farm when she was a kiddo.

Star,

             No my sister-in-law didn't want to get her hair done even though I said," oh come on it will be fun. 'She said matter a factly --Fun for you! I just said maybe next time . We took a long walk and picked some Lilocks watched half of a movie . Then my husband put on his Celine cd's . She was up stairs danceing and listening with him . It was a good 3 hours . When her husband picked her up and she said she didn't want to go ,I said if you make a fuss when it comes to go home you won't be able to come back or go with us next time .  That worked . She went willingly.  I know what you are saying about the medicine . It is just like everything else they have good days and bad so don't feel bad you seem to be making a big difference  in her quality of life. I would just let her daughter know that she refused them. My husband somedays says he doesn't need or want them but so far I can still get him to take them . BUT I know the day will come he just won't . They don't seem to be helping him anyway . But I still hope . As far as a nice sunny day we all seem to be happier when the sun is shinning . I looking forward to a nice sunny day too.  Thanks, Love torn

The number of Americans aged 85 and older is skyrocketing. It has soared from just over 100,000 in 1990 to 4.2 million in 2000 – and is projected to be 21 million by 2050. About 69% of people turning 65 this year will need long-term care during their lifetimes, and 20% will need it for five years or longer.

Which is worse? Needing care or having to provide care. Many of the tensions of caregiving could be eased with better planning.

Plan early, and save, invest, or insure. Maybe you can't solve the public policy problem alone, but you can protect yourselves and your families. Doing so is an important contribution. After all, as a wag once said: 'The best way to help the poor is not to become one of them.'

Yes, Long care insurance is the best way to go for most but if you are diagnosed with AD first the option is gone. So I would advice if you have knowledge the disease has effected other members  of yur imediate family I would sign up ASAP. No one knows when the Care giver will get sick and no longer be able to care for their loved one either so being prepared and getting things in place will help some what. Health care proxy's, wills, trust's, power of attorney ,living will. all should be discused also.

Love torn said....Yes, Long care insurance is the best way to go for most but if you are diagnosed with AD first the option is gone.

A good reason to obtain LTCi early....lock in your good health....possibly increase benefits in the future.  Especially necessary to families who have already been afflicted with AD.

Unfortunately, too many people don’t take the risk seriously when they are young enough, healthy enough, and affluent enough. Your good health is what buys long-term care insurance, you money simply pays for it.

I thought i was making some progress and now it seems we are going backwards again.  It is a struggle just getting my lady to wake up in the morning.   The past 2-3 days she has refused to take her meds. She doesn't want to get dressed either,  I have managed to get that accomplished, the two of us, not to her liking most of the time. She stays in her room while I play cd's on her boombox for her and bring her food and snacks.  I have been trying to no avail to get her to come downstairs and visit with me and watch the birds and the dogs playing but she wants no part of it.  Granted the weather has been really dreary.  I have been praying for a change to sunshine and maybe a more upbeat mood for her.  Meanwhile, I have been cleaning and organizing cupboards for her dgtr and making casseroles and cookies, etc.  She likes the cookies.

Sounds like you are doing the best you can Star,

 Good Days ,Bad days . That's how it seems to go. Just know you are doing all you can if she isn't responding to it maybe she needs to be checked out for depression or she is just having a bad day.

hang in there .  Love Torn