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Message Boards Forum Index Alzheimer's or Other Dementias Under Age 65 Husband just diagnoses with ALZ.|
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Hi I am new to this board and am just looking for any and all info. My husband is 55 and just diagnosed with demintia/alzhemiers. I am 34 and we have 2 children 13/7. He hasn't work in a year now. He was Assistant Director of one of our malls. We also homeschool our children. The doctor has told him he shouldn't be driving anymore,which is putting all the running ect on me. Does anyone have any ideas regard transportaion that he could get to go to the store if he wanted to get out for a little while. Him and the kids are in the house all the time as i work 12 hr days 5 days a week. The doctor put him on Aricept, which he says he has seen some improvment with his memory, he is also taking Risperadol, lexapro and other meds to help him sleep and stay calm. I am new to this website and looking for resources ect that might be out there to help us thorugh this. I deffinitly belive in the power of prayer and that God can and will change things if we only belive.
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Mjmac, who is teacing the children? Have you thought of making a change and enrolling them somewhere?
Do you know what stage he is in? Why is he on an anti-psychotic med? Has he been violent? These are not recommended for AD and IMO, should never be used except in very extreme cases. If he is agitated, there are lots of good agitation meds out there. I think if the doctor said he should not be driving and he is that far advanced, then he also should not be going to the stores by himself. Have you considered an adult daycare for him? Being home without adult supervision doesn't seem healthy or safe for either him or the children to me. Trouble and the Grace to bear it, come in the same package. |
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mjmac -- I agree with Twice Blessed -- you need some help. The caregiver needs to be strong and you can't do that with everything else you have going on. If you don't have access to Adult Day Centers do you have people at your church or other places that you could have come in and stay with your husband for a few hours a day? you definitely need to find some relief or you won't be good to your family.
I have a blog that I keep on-line. I don't know if it would be helpful to you but you are welcome to look at it. The site is www.creatingmemories.blogspot.com. Although it is tough, know that there are other people are out there that are willing to help. Many of them just need to be asked. Kris B. Kris Bakowski Athens, GA www.creatingmemories.blogspot.com |
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Hello Mjac
I just want to let you know I am thinking of you  My husband is 61 and I am turning 50 next month, he was also just recently diagonsed. He is no longer working. It is a huge adjustment to suddenly become the person responsible for not only our spouse, children, and daily chores. But now we must do home maintenance, banking, and major decisions.And all this on top of working a full time job! I spent the first 2 months off work , crying most days with him saying don't cry honey it will be ok. When I knew our lives would never "be ok" again.I guess we are lucky because he just looks at each day. I was looking far into the future but I now have taken a page out of his book and just enjoy each day that we have. Not to say we are not planning our lives for the future, we are. I have found so much support/information from reading posts on this website, I am taking advice found within these posts. I enjoy all the " little" things and try to to worry about the future as I can not change it. My husband is also and Aricept 10 mg, we have noticed an improvement. Hang in there Mjac, you are in my thoughts. kathy |
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mjac,
I would recommend you contact your local Alz Assoction hotline. They can supply you with a list of resources like adult day care facilities who can pick up your husband and drop him off at malls. In addition you should ask them for state run aid programs for people under 65 who qualify for companion respite care who will come into your home and give you a break which you do need. Hope this helps. Dan please pray with me for a CURE |
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Hi Michele, I am so sorry for what you are going through but please know that you are NOT alone. There are so many families in the same boat as you and I know that doesn't make you feel any better, but many of us that have traveled the very same road that you are traveling can offer much help and support. I have a online jounral that I keep if you would like to visit: Young Hopes World
Also I am sure that your local Alzheimer Chapter may have some resources that can help you. You can also go to www.alz.org which is the National Website and it can direct you from there. A for getting out, maybe a neighbor could assist him or he could volunteer through the Chapter and that way he is staying active and he is not alone and that gives you alittle break. Just some ideas for thought. By the way I was diagnosed in 2002 at 38 years old....Tracy Tracy Mobley 417-933-2030 Diagnosed age 38, now 44 tiger@centurytel.net Young Hope The Broken Road www.amazon.com Camp Building Bridges http://www.freewebs.com/campbuildingbridges08/ |
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Thank you to all who posted. I was especially touched by Tracy story. This is not an easy road, but i belive that with God's help that we will have the wisdom to travel it. My husband is by no means so far gone that he needs Respite Care or someone to bath him. He is trying to adjust to the news and how to go on from here as well as I am. I am more convinced that he needs a goal and not to have his life taken from him and to feel that life is over. I know i would be angry too.
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mjac -- I also have an online journal if you would care to look at it occasionally -- it is
www.creatingmemories.blogspot.com Kris B. Athens, GA Kris Bakowski Athens, GA www.creatingmemories.blogspot.com |
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mjac,
When my husband was diagnosed with EOAD in 1998, there was not much literature available concerning younger people with dementia and I had a difficult time finding people to share with. EOADs often face different issues than older people do. With this message board, you will have input and the wisdom of those who have gone before you. My advice is to stay in touch here regularly. More than just about any disease, it is important for families living with AD to educate themselves. There is excellent material on the ALZ.org website and through your local chapter. You may not want to know too far into the future what you might be facing because it isn't pretty, but you need to be prepared for the next step. As I have worked with people in my city and online, I have seen many of them have to make crisis decisions becaus they didn't know what might come next. You have many adjustments ahead of you. But you will be amazed at how you will be able to make those adjustments. there were three things that helped me survive: my faith in God, looking at what my husband could still do (rather than what he had lost), and keeping a sense of humor so that we could laugh at the funny things. Above all, Michelle, know that there are a lot of good days ahead of you. Concentrate on those. {{{HUGS}}} |
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Hi Michelle, I am so sorry about the diagnoses of your husband. But, I'm glad that you are here for support and information.
My wife was diagnosed with Early Onset Alzheimer's/dementia during 2004, but was showing signs as early as 1999. During the early phase, she wanted to continue working but had to settle for meanial jobs compared to the job that she held as an degreed accountant. This was her choosing as we all know that today it takes two incomes. Once I noticed her being abused by employers, I advised her that she no longer needed to work and I setout to obtain Social Security Disability for her. If your husband is not covered by his work place disability, I would suggest that you contact Social Security if you and he are US citizens. Another thing to consider is the legal affairs. A durable power of attorney will not only let you make decisions regarding financial, but medical also. A living will would be in order also, as well as a regular will. Often times they will be reluctant about entering into those things, but I told my wife that "We" needed to get these things done. If he was a veteran, you can apply for benefits from the Veterans Administration which will help greatly with the cost of medications. Be leary about leaving him unattended as we never know what will occur and when. He could appear fine one day...and the next he could easliy get lost. Gather all the information you can about symptoms and check off the ones you see...and prepare yourself for symptoms that are to come. I would suggest that you look into a caregiver at home. Others have suggested day care, which is good, but expect resistance. Gary |
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mjac,
Everyone gave great advice. Gary especially gave some wonderful advice. Your husband qualifies for SSA for sure, if you have over $3K in assets you don't qualify for SSI. But, the good thing, because you have children under 18 years old, they qualify also. Make sure you apply NOW. There's a 6 month waiting/decision making time before anything happens. If your state has a disability program, he should qualify for that. John is getting 1 year of state disabiltiy insurance in California. Plus, he gets a decreased amount of SSA until the SDI runs out. Then, the SSA rate goes up and the kids start getting their money too. Having the kids home schooled may put too much stress on him in a very short time. It may be ok today, and totally out the question tomorrow. I commend you for home schooling, but this may not be an option for you for much longer. Sorry. Even if you get a caregiver that will come in to help with your husband, they may not be willing to take on the responsibility of your children. I know for us, I see a huge difference in John's abilities from December when he was diagnosed to today. He can no longer tell time on an analog clock, he has difficulty dealing with the kids normal behavior, forget when they are having a bad day. He can't help with even Jenna's first grade arithmatic. He can't problem solve even the easiest thing. I've gotten Durable Power of Attorney, we signed papers at SSA office so I can get information on his acct., and I made sure before we got the final diagnosis, that I got additional life insurance on both of us. I have to protect my children's future. Be careful. Make memories for yourself and your children with dad. Take care of business. You're not in this alone. Carol |
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Hello to everyone.
Thank you for the wonderful advice. Just an update on how things are going. John has stopped taking a couple of the meds the doctor had him on and is really doing so much better. As I have learned through the years working with ALZ patients and in the hospitaland have found that sometimes medicine can have far worst side affects than we realize. My work schedule is changing starting tomorrow. YEA.. I am returning back to the ER to work 3/12hr night shifts, vs my 9-5 job and I will be able to be home more and be more of a help with the kids. Homescholing is going very well, and we have no intentions of putting the kids in school, in fact the nuerologist told John that it was good for him to have this stimulation with the kids and to keep his brain active. To be honest I am very surpised at some of the comments i have found on this board. This is not a dooms day diagnosis nor have we really looked at it that away just a few minor changes in our lives and to work around them. We are hoping to hear from SSA SOON, but as we all know the government does not get in any hurry. Hope everyone is having a wonderful weekend. Michelle. |
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Michelle--I've got no business posting on your thread....My loved one is 75 and has plain ole Alz.; but I've followd this thread from the beginning and wanted to take a minute to congradulate you and your husband on your great attitudes. Reading a sentence like the following one was a pleasure:
"He is trying to adjust to the news and how to go on from here as well as I am. I am more convinced that he needs a goal and not to have his life taken from him and to feel that life is over." If we manage to adjust our expectations, hang on to a dream or two and shoot for a goal life may seem more enjoyable. Have you found any solution to the transportation problem?? skericheri@yahoo.com |
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Michelle -- this is great news. I'm glad to hear that he is doing better and you are able to adjust your schedule accordingly. Your attitude will make a big difference in your husbands health as well even though that may be hard to understand. Keep on the chat -- we are here for you.
Kris B. Athens, GA www.creatingmemories.blogspot.com Kris Bakowski Athens, GA www.creatingmemories.blogspot.com |
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Michelle, I as Kris also keep a journal. i think I mentioned it to you but forgot to give you the web address. I talk about the good and bad days as well as the advocacy that I am very active in that may help as well.
Young Hopes World Tracy Mobley 417-933-2030 Diagnosed age 38, now 44 tiger@centurytel.net Young Hope The Broken Road www.amazon.com Camp Building Bridges http://www.freewebs.com/campbuildingbridges08/ |
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In answer to the transportaion issue, he seems to be able to handle that a little better than he did a few months ago. He has been driving more occasionally. We have recently moved to a suburb of Phx and it is not as busy as where we were living, and everything you could want is all in a 2 mile radius. As I will be working nights and sleeping for a few hrs during the day I dont think he will feel so isolated and will be able to run to the store if need be. I think that has been the hardest on him. I have been working 10-12 hrs 5 days a week besides the 2hr commute daily and I have not wanted to go anywhere when i get home so this causes some frustation. I STROGLY believe that EVERYTHING happens for a reason, we might not understand at the time nor enjoy the process, but it is all for our good and in the end God's plan comes to fruitation. I have learned and am continuing to learn that I too have limitation and i can only do what i can when i can and the rest can wait.
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tootsiemidg@yahoo.com Forrest City, Arkansas |
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Hello to all
It has been a while since i posted. Just wanted to give an update on what is going on in our lives. One of the best things that has happened in the past few months is that John was able to get on Social Security Disablity which is helping the family financially and I think it makes him feel like he is contributing. I am working 3-4 nights a week and am only about 2 miles from the house which is nice. We are still homeschooling and will continue to do so untill we know when it is time to stop. I am hoping it will continue on. John is having his good days/bad days. I think mostly from the depression and the thoughts of the future. I have been researching for anything that might help slow the progression down. I did run across an article on transplaning your own Bone Marrow. Has anyone heard anything about that? I am curious to find out more. Also, does anyone take Aricept and Namedia (sp) together and does it work? Thanks for reading.. |
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mjac, Aricept or any of the three in that class combine very well with Namenda in most patients. Namenda is a very good addition in slowing the progression.
Since bone marrow and the brain have little in common, I fail to see any correlation between the two. Trouble and the Grace to bear it, come in the same package. |
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Hi Mjac
my husband was diagnosed in Aug of last year, we started out with Aricept at 5 mg and moved up to his current dose of 10 mg. We added namenda a month ago, he has had no problems with either drug and has had marked improvment since the Aricept and also since the namenda. I would certalinly try it to see how he tolerates the drug and if it helps him. Good luck Kathy |
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Hi mj, it is great that your husband is doing well. Brain stimulation is very important with this disease so I encourage you to keep him going. Also, i have been on Exelon and Namenda for almost 4 years now and have done quite well. Though we are seeing less effect than a year ago the meds has given us a better quality that i would have had without them. I wish you the best.
Tracy Mobley 417-933-2030 Diagnosed age 38, now 44 tiger@centurytel.net Young Hope The Broken Road www.amazon.com Camp Building Bridges http://www.freewebs.com/campbuildingbridges08/ |
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Hi mjac,
My husband was diagnosed Dec/06 and has been taking exelon and namenda for about 1 1/2 months and he is doing so much better. He seems to be so much clearer and is able to think about preparing dinner in advance and where he left the car parked. He is still having some depression but is able to cope better with it and is not constantly calling me at work. I have not heard about transplanting bone marrow and I have a hard time seeing how this would improve dementia. David is taking vitamin and herbal supplements that were okayed by his neuroligist. The way I see it...every little bit helps. We just applied for SSD so hopefully we will be getting some financial help soon. How long did it take to start receiving SSD after you submitted the request? Take care and be strong for your little ones...we also have a 7 yr old daughter so I know how difficult it is. Mary T
Mary T |
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Mjac -- I too have been on Namenda and Exelon for the past 3.5 years and see quite a difference than being on Aricept and Exelon. But, what works for some don't always work for everyone. Keep working on it -- sometimes you find the best combination of drugs by trial and error.
Kris Bakowski Athens, GA www.creatingmemories.blogspot.com |
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Hello to everyone. I check in once in a while.. Soo busy with kids, work,hubby. Thanks Kris for the advice. We were reading about Namenda and he was wondering if it might work, I told him we just need to try it. He is saying that the Aricept is not working like it used too. I am noticing that he is far more tired and less active in the past few months, and really irritated. Any little thing will just set him off. I am also tired and exhuasted most of the time. He is pushing me to go to Nursing school, so I am trying to get my mind geared towards that, its deffinitly not something i am not familure with, and would not have a problem, its just a TIME factor and everything else invovled, but as he keeps telling me now is the time to do it while I CAN..
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In answer to Mary T. We orginally applied in Jan '06 and if he would have went to his "origianl" appointment it would have been soon, but since he didn't follow through with it, it was June '06 and he was approved by Dec '06 of course he got all the back pay from June, as well as our daughter. He has signed everything over to me and we have drawn up the Health Care Power of Attoney as well as a General Power, I also make sure everything is done in my name When did you husband apply?
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HI mj, I was on exelon and namenda for almost 4 years and the namenda has been an awesome blessing, basically the booster to the meds I guess you would say. After being on the exelon so long now, we see less benefits, so I have just been switched to aricept and namenda. As Kris said, you have to find the combination that works.
Tracy Mobley 417-933-2030 Diagnosed age 38, now 44 tiger@centurytel.net Young Hope The Broken Road www.amazon.com Camp Building Bridges http://www.freewebs.com/campbuildingbridges08/ |
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well I am calling tomorrow to find out what to do with him. He is getting to the point i'm afraid to leave the kids with him. He is mad and angry and i know most of it comse from frustation with everyhting he goes no where has no friends ect. He gets mad at the little things and throws fits.. I knwo the kids are afraid of him and they dont totally knwo what is going on i'm just at my wits end with him. I dont want to make him leave, and i dont knwo where to tell him to go, but somethign has to be done... If anyone has any suggestions let me know. thanks..
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Hi mjac:
I was just wondering how things are going. Have things gotten better or did you get any helpful suggestions? My husband was diagnosed last September at age 52. We have 3 kids under the age of 10. I know how especially hard all of this is with kids around. You have my sympathy. I hope you'll keep us posted on how things are going. Take care, Kelly kelly klbuckman@att.net Massachusetts |
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HI Kelly,
What a relef to know there are others out there walking in the same shoes!! We are just taking it one day at a time around here. The pysch doctor put him on Tegretol 600 mg a day which seems to be working a whole lot better. He is also getting Testosterone shots q weekly as his levels were extremelly low and that could account for his moodiness, tiredness, irriblity. He has been reading a lot of different "natual" methods and has been taking Omega 3. Since taking the shots he seems more level..Not perfect....but better.rofl.. more like himself. I have come to the conculsion that making any rash decisions is nto the thing to do and to take one day at a time. If you would like to email me privatly that is fine. Michelle mjac1998@yahoo.com |
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Hi, My husband is 66 and was diagnosed a year ago. He is declining fast after having a mini stroke in February this year. We had to move him into an assisted living place for Alzheimer but now his is getting combative and was recently sent for psych eval and medication adjustments. I'm frustrated because I can't seem to find places that will care for someone his age with his physical stamina and agility. He's physcially healthy and is 6ft tall so caregivers are uncomfortable in dealing with his agitation. If there is anyone with any suggestions are information on resources or facilities specializing in caring for this kind of situation, please share with me
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Hi mjac,
My name is Dave. I have read your posts and wish you the best. In one of the post, I think you said that your hubby was driving again. My wife has Semantic dementia and she is 60. I also let my wife drive against my doctors suggestions and she ended up in a minor accident. I also discovered that our motor vehicle administration here in Maryland has laws that pertain to people driving who have this awful disease. And it was definitly against the law for her to drive. So I had to take her car key away which was not easy. Lawsuits are very prevelent in our society today, and you are putting your family at risk if your husband should get into an accident. Also, my wife was very fortunate that it was a minor accident--she could have been seriously hurt. You might want to check with your state driving laws concerning people who are diagnosed with dementia. I hope the best for you and remember that patience is so important dealing with this disease. LOVE is eternal Dave |
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Thanks for the advice....John doesnt' drive much anymore..he is just decling so fast and i am at lost on what to do. I'm really frustrated in the fact taht he is still "young" and "seems" to be healthy, but mentally he is going down. Sometimes i dont know if it is the bi-polar or the ALZ that causes his memory loss, or the delcine of it. He told me tonight that he is just not comfortable being left alone with the kids while i'm at work. I am not ready to face changes nor do i want to but i know i HAVE too...He gets really depressed when he knows he can't do what he use to and i belived it just makes things worse. i dont see the Aricept helping anymore, he has an appointment with the neurologist on Monday, i am wanting to see him try Namenda. The Physc doc had put him on Tegritol XR which seemed to be helping then she changed it to the generic and the past week he has declined... just frustrated tonight.
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Lele, I know first hand what you are going through with your husband being physically fit and 6 ft. tall. My husband is also like this and when he got agitated in the Facility, the Nurses and CNA's became afraid of him. He was sent back 3 different times to the Psych Unit for adjustment to his meds, finally the last time they got it right and he has calmed down and it a totally different person. He is back in the facility now and is so calm and always smiling. This was the way he had always been, but, for about a year or so, he became very agitated and would lash out, especially at me. This was very hard for me to handle as he never raised his voice to me in the 25 years we have been married. Now when I go to see him, he smiles when he sees me coming down the hallway. We hold hands and he gives me little kises. He does not say much now, but, touch is so very important. Those three little words "I Love You" can really make a difference to a person with Alzheimers. This is my first post so I hope it comes out OK. Lele, my e-mail address is lrwoolery@aol.com if you would like to write and I can explain more about what we finally got him taking now. I just take it one day at a time, as it works better for me that way. Thinking too far in the future just overwhelmed me, so I decided to work through things one day at a time. I just enjoy the day I spend with him and do not think about what is to come. That day will come soon enough I am sure. I was my husbands caregiver for over 4 years and I too have gone through a lot and about 4 months ago I finally had to give up being his Caregiver as the 24/7 was starting to take a toll on my health. This was hard to give up and sometimes still is, but, I know in my heart I have done the right thing for both of us. Good Luck and I hope to hear from you.
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Although I have known that my husband's personality has been changing for the last couple of years it wasn't
until a few months ago that he was diagnosed with dementia. He's forgetful,looses things, and the worst are the angry outbursts and paranoia. I've known him all my life and he is now 68 years old.I know he is terribly frightened of what is ahead and frustrated. Does anyone else have a loved one that was diagnosed with frontotemperal dementia? So far the neurologists, etc. that he has seen have said that there is nothing one can treat that type of dementia with.In Aug. I will be taking him to the Mayo Clinic for a 2nd opinion. They want him there for 3-7 days. I do not have an extended family and try to hide how frightened I am.I feel so alone. Reading you postings have been a great help to me. I'm glad that I found this site. Patchee Karen Jagodinski kljago@charter.net Wis. Rapids, WI 54494 |
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Dear Patchee,
Please know that I am praying for your husband and you. My dad was just diagnosed with alz. in June - he is 81. I have not heard of the type that your husband has, but i am new to this disease - trying hard to find out everything i can to help him. My mom takes care of him and it is hard on her too, as my sister (48) who is mentally retarded also lives with them. My dads' personality has changed - he doesn't talk much (afraid that he might not make sence ) he hates it so bad - gets really frustrated because he can't remember something he knows he should know. Good luck to you - take it day by day - know God is always with you. God bless, Pat |
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Patchee:
Go to the caregivers forum and repost your question. I believe there are some people who would have good info for you. |
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I am a firm believer that you have to exercise the brain as much as possible. It's like a computer hard drive that gets fragmented over time in how it stores information. Sometimes they can become corrupted.
If you think about it, most of us do the same thing every day almost all our lives based on whatever profession or work we do. Often, during these redundant days, we think about the same things, never accessing or forcing our brains to do things it's not accustomed to such as a crossword puzzle. I used to work with my grandfather on documenting his past to force him to try to dive deep into his brain (hard drive) and access memories (files) that he hasn't accessed in a while. I believe this helps force synaptic activity in areas that haven't had any in a while. Just like stimulating a muscle. If you don't use it, it atrophies. God Bless you and good luck. - - - - - "Document your memories...for yourself, your loved ones and to let the world know you were here. Once they're gone they're GONE. http://www.legacyleaf.com/ my blog: http://www.legacyleaf.com/profile/jdoyle1 |
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