I just wondered if I could hear from some other spouses where both the caretaker and patient are under 65. We add this disease to all the usual issues of being 62 and 61.
I have been consumed for two years with the sick/leave retirement issues and making sure that health care was organized. DW was a smiling "mother of the Bride" but was unable to do any wedding tasks. She can hold our young grandson but is not able to take care of him. I am now a full time caretaker, and trying to figure out if I can do professional work without DW feeling abandoned.
DW drives "a bit" (to cvs at the end of the street. ) If I am navigating she can drive in low traffic areas of national parks. My grown children say that i was an over -protective parent and now I am an over protective caretaker.
One problem is that all of DW's hobbies were cognitively intensive. Not much luck in getting her to try other activities unless sit involves the kids.
For myself I have the overwhelming feeling that we are being cheated out of a special time that I had planned for over 20 years. I try ot make the best of it but the anger is real. Not at her but at "whatever"
Crushed, you are certainly not alone in your feelings...I too feel cheated that we ware not having the "retirement" that we planned for and I'm angry that the money we saved to travel and enjoy our "golden years" is being spent on my husband's care.
My husband is 63 (dx'd with FTD at 58) and I am 62. After several incidents of my husband getting horribly lost (I'm talking about driving over 500 miles to 3 or more states one night before finding his way back to a location 1.5 hours away from home), I took away his car and hid his license and decided to "retire early" at 57 because it was clear that he needed full-time supervision. I was not ready to stop working and would not have. I know that I was not able to work out of the house because of the supervision requirement. Of course I could have hired a f/t caregiver which would have allowed me to work, but I didn't really want to work basically to pay a caregiver ($70K+/year), so I chose to take care of him.
If you are serious about wanting to work, then I would start introducing part-time caregivers into your home so she gets used to having someone other than you in the house. Many alz spouses refuse to have someone come in the care for them, so many caregivers say they've hired the person to help them with laundry, household chores, etc. and slowly a relationship builds and everyone gets more comfortable with having a "new" person and they can transition to caring for your wife. Another option would be finding a suitable Adult Day Care program for her, but again many alz spouses refuse to go. A tactic that has worked for many is that they tell the spouse they are going to "work" or volunteer to help the staff out. Usually the day care staff will play along which helps make the transition easier.
Unfortunately, nothing's foolproof and you may have to try several approaches before you are successful in leaving her and going to work. I know it would have been difficult for me to concentrate on my work if I left my husband at home, even with a caregiver I trusted. When I'm out, even for a few hours, I am always worried about what's happening at home and we now have a trusted f/t paid caregiver.
We are both early 50s with a teenager at home. DW has been on disability since 2008 but we realize that her dementia (bvFTD) has been going on for over 15 years. After a few years of having paid caregivers at home she has been living in an ALF for 4 months. Given her age and abilities not a great fit but she would not fit into any ALF unless they specialized in younger onset dementia.
We've seen a great reduction in her interests. The biggest problems these days are social, she isn't making friends at the ALF. Her family and friends are supportive (yes, a few have dropped off of the radar but I think we are doing better than average) and her expectations of daily phone calls/emails are unrealistic, but she could benefit from making a friend.
Crushed I don't think you're over protective . There will come the day when DW will become totally lost on the way to CVS only a question of when, or encounters another vehicle is one of the "low traffic" areas. My DW was functioning at about the same level in 2005 when she was dx'ed I was able to continue to work from home (all I needed was my cell and laptop) for another five years. There came a lime when the amount of attention she required was out of balance with the attention my work required and it was at that stage I retired
Crushed -my hb is 66 diagnosed at 59. I am 61. We were able to live our dream for a while only because we were encouraged not to wait unit 65 to start. We live FT in our RV since 2004. We have traveled and worked all over the country at various RV parks and campgrounds. After he was diagnosed in 2008 he no longer worked but I did. I finally quit the last workamper job in May, drove the MH for the first time from Nevada to where we are in Washington. I hate not working, I hate that our dream has stopped because of him - even though I know he had no choice in the matter.
There are many couples here where one or both are under 65; ones that still have kids at home, even young ones; and those who started this AD path when they were under 65 but are now over. It is a horrible disease that does not care your age or profession. When we were visiting my FIL in 2006 in the AD ward of the VA facility in Bedford, MA the wives were telling us the occupations of the guys. They ranged from highly educated to ditch diggers - AD could care less.
Hi Crushed. I am 58 and hubby 63 last week. Official diagnosis Dec. 12. But have known for at least 2 years if not more. My hubby can still be left alone but our roles are changing. He used to be able to fix anything around the house and now cannot even change a light bulb bless him. Can no longer cook but can go out by himself walking. No longer drives and now the doc is worried about his riding his bike. I have a pretty good idea what lies ahead but try not to think about the future too much. We were highschool sweethearts. Married when I was 17. Have two boys. One 39 and one 22. My 22 year old is a blessing and my only source of physical support as most of my family live in the UK. My older son seems to be burying his head in the sand which I guess is his way of dealing with it. That said,so far we are doing well. Try to keep a sense of humour such as the other day when Paul had one slipper facing one way and the other facing the other way.he had to really think about it but did make a little joke. I won't say we haven't cried, but what else can one do except make the best of the hand God dealt us.
We were both early 50's when AD came calling. Wish we could have just peeked out the peep hole and waved it away. He had to retire as he was unable to remember tasks he had been doing g for years. I worked another year and a half. I retired to be home with him as he needed more help/supervision around the house. I was only 53 when I retired. Too young to draw any SS or pension from work yet. Thank goodness, he was a government employee so we do have health care. It is heartbreaking to realize that your dreams for your future (that you have been working for years to achieve) are basically gone. This is all consuming. It is also heartbreaking to watch his decline knowing that he is aware of every loss. He feels like such a burden and useless to me. That is what crushes me. He is a typical male who wants to provide for and protect me. It is so sad to see him feeling so defeated as he continues to lose more and more of the man he once was. This is one cruel affliction!!! On another note....we are so fortunate that we traveled some as soon as the kids finished college. We took a couple of cruises and flew to St Thomas one year. We have still managed to get to the beach every summer (this past summer may have been his last). I am thankful that we didn't put off all our plans until after retirement. We would have never gotten to do that. We now live on his meager pension and I keep my daughter's 2 boys to supplement our income. It is working for now. Down the road....who knows??? A lot of uncertainty!
I share your feeling of being cheated out of long planned activities. My husband was diagnosed in 2010 at the age of 63 (I was 61.) However, since an aneurysm in 2002 he had suffered from short term memory loss and had retired in 2006. I retired in 2007 when my employer offered a very generous escape clause to senior employees. By 2008 we knew something different was happening.
From 2007-2011 we were fortunate to fulfill some our our travel plans with trips to Europe, Alaska, etc. Spring 2009 was the last time I was able to leave him for a quick trip to NY. As she progresses, your travel will change. Those independent jaunts become fewer and fewer; cruises work for a while. Next week we travel to NYC to visit our son and navigating TSA, being prepared for incontinence, worrying about how he will handle crowds, etc. makes me think this will be our last trip.
I find it very difficult to be so tied down and "joined at the hip." We led very separate lives in many ways with different professions, hobbies, friends, etc. Now, I'm never alone. I urge you to get your wife used to routine assistance in the house, so that you have a chance to do those things you need to do or enjoy doing.
Day care is a difficult possibility as everyone else is so much older, and my husband is very aware of that fact. In fact, he is still keenly aware of his deficits, which makes this sad journey even sadder.
Finances are a worry as the money we have has to last; there is not more coming into the household. Every major purchase - a car, the kitchen repair, new AC, etc. is cause for anxiety.
"I was sad because I had no shoes, till I met a man who had no feet"
Thank you for letting me at least count such blessing as I can. DW has no problems with ADLs although memory is spotty . I have certainly grabbed the chance to travel while we can. She is discouraged but not depressed.
Crushed-My DH was 64 at official diagnosis, ALz and FTLD (signs many, many years earlier, just did not connect the dots) I was just a few months shy of 50. Two teenagers at home. DH goes to an Adult Day Center and as others have said "He believes he works there". He is 70 now and he still one of the young ones at the Center, but luckily this has worked for us. We are here for you, we get it.
Crushed I am 52 DH is 61. When we first realized something was wrong was 10 years ago. He took LTD 6 years ago and I left full time work 5 years ago and worked part time unt this year. He cannot be left alone now. He has been lost 2 times walking off 1 time on his bike and 3 times when he was driving. He refused to give up driving until he had an accident and could not remember the details. It's not my decision but she should not drive to the CVS. We had to wait two years to see if the insurance settled with DH's accident. We could have lost everything.
I too had hopes of traveling. Two daughters live out of state. We can no longer travel. It is to hard. Our youngest was married this year and it was difficult. He did walk her down the aisle. But it took my whole family to help me with everything.
I would say my DH is stage 6c. Becoming incontinent and has trouble with conversations. He cannot flow directions. He could not fix himself a sandwich.
Crushed, you are not alone, trust me. My DH and I are both 64, he's had symptoms since 61 or 62 but was only officially diagnosed at 63. His progression has been very quick - I would say he is almost fully in stage 6 now and I feel placement will certainly happen in the next 6 months. Our third grandchild was born this morning and he went to the hospital and held her briefly but I don't honestly know if he understood. I don't know what you do with the anger about being robbed of your retirement years together - my DH was a lawyer for 36 years, worked so hard and did prudent financial planning - that will all now be used for his care rather than the travel we envisioned. I'm thinking of getting some professional counselling for myself just to pick up some coping mechanisms. I'm sorry you have to be here but there is much support and encouragement for the journey.
Apple, table, penny... I have to chuckle at your handle! I so understand.
Yeah, it stinks for everyone, but I get what the opening post is asking. We were an under-65 couple. He died this year after 10 years of it, at 66. I'm 52 and moving on while processing all the feelings from which I disassociated while raising the kids and doing the business stuff on my own.
I am probably still trying to comprehend the random nature of anything so awful.
from Zulu 1964 Private . Thomas Cole: Why is it us? Why us? Colour Sergeant Bourne: Because we're here, lad. Nobody else. Just us. https://www.youtube.com/watch?v=CJ9KkgGB4Kk
I also feel incredibly guilty and "low life" when I worry about myself and my life and my future compared to DW who has the disease.
Crushed. Your feelings are shared by all of us at one time or another. Even though I have lost my husband, I still have them at times. I think it is typical of any spouse of a person with dementia...after all we ARE a different breed than other caregivers! And though we have so much in common, we must also realize that each person who suffers with a dementia is just that... A person with dementia, unique into herself or himself. So please try to be kind to yourself, look at your own situation and decide what works for you and your DW. And take comfort in the fact that you have all of us in your cyber family who can empathize with you both in a way that is loving and non-judgemental. We are all at different stages of this journey...it is definitely one hell of a ride, but we will all get through it together.
My husband was diagnosed last year at age 57. I am 45. We will celebrate our 20th wedding anniversary this year. My husband is still independent in some things, but forgets how to do others. He has a hard time following directions, with his speech and of thinking of words when carrying on a conversation. Sometimes it feels like I am playing 20 questions with him trying to find out what he is trying to say or mean. Before he went on medication, he would sometimes forget who I was, or would forget we were married and would keep asking me to marry him. One of the things that I miss most I think, is talking to him about making decisions. He seems to be doing better after being on aricept for six months. He remembers who I am and that we are married. He continues to be very upbeat and cheerful and I am so thankful and blessed that in that his personality has not changed yet. We have learned to just take one day at a time!
Crushed--we were an under-65 couple when my husband was dx at 60 (I was 56), 8 1/2 years ago. This is a tragic illness to deal with at any age, and I think that the younger it hits, the more complicated it is to adapt to issues like forced retirement, loss of income, no shared retirement together, etc. along with all the mental and physical losses the person with dementia experiences. However, I am thankful that since this hit my husband so young, I was strong enough to survive caregiving at home for 6 years pretty much intact. I moved my husband to an assisted living facility 2 1/2 years ago and have been able to resume a more normal life with a new partner.
Regarding the comment about being an overprotective parent and now an overprotective caregiver--it's not a valid comparison. People with dementia can cause all kinds of havoc and my mantra was always to attempt to AVOID potential problems instead of having to deal with a catastrophic event. Unless your children have been hands-on caregivers of someone with dementia, they're not in a position to label you that way.
Your feelings about being cheated out of your dreams are normal, but the resentment will fade as time progresses. Hopefully, at some point you too will be able to build a new life. Hanging onto your work is probably a good idea and will give you something else to focus on--as LFL said, get help in the home as much as you can in order to make that happen.
As I have written we are early in this process. DW has almost all of her emotional reactions intact. She can be warm friendly and funny. She gets confused in movies but enjoys stand up comics. Also compared to most our financial shape would be considered excellent. Latest crisis was the death of her "step mother in law" just before Christmas. DW's mother died thirty years ago and this was the very nice lady who was a grandmother to our kids. Our kids have "stepped up to the plate" to handle most of the messy details.
I guess I am a bit of an optimist, I am about to start buying airline tickets.
Crushed, Buy those tickets and enjoy yourselves while you still can. I agree with others here in that you are not too protective. Your wife can drive to CVS until she can't, and when that will be is an unknown. Better to be overly protective than to deal with the aftermath of an accident. If money isn't an issue, I would look into hiring some inside help so you could continue to work. I think it would be beneficial to you both. You have come to a wonderful site, where many are going through (or have gone through) the same challenges that are ahead of you. Good luck. (We were an under 65 couple - my husband suffered 9 years.)
I agree if there is any way you can get someone to come in and help so you can continue to work do so. Time will come soon enough that you may have to give it up but put it off for as long as you can. I lost my DH a little over a year ago and I was 60 he was 65. I had to quit my job at 55 to care for him. I do not regret it but wish I could have stayed at my job a little longer. And go and enjoy all you can together while you still can
DW is extremely supportive of the "at home" portion of my work. What is harder is the travel/meetings portion. I'm working on it. DW also knows that sometimes I just have to "put down" the constant responsibility for her or I can't function.
The hardest parts right now are the crying/sobbing/anguish sessions If I am not "right there" she tends to spiral downwards very quickly. She does not verbalize her fears or sorrows or disappointments but she is simply paralyzed with grief. I tend to watch for early signs and head it off, generally by asking her advice on something to convince her that she is not helplessly dependent. I remind her of the scene from Ben Hur where the small man with no legs is carried by and speaks for the big man with no tongue. "between us we make a considerable man" Thanx
We were an under-65 couple. My wife started showing signs at age 60 and was diagnosed at 63. Now both 67, I had to place my wife in an assisted living facility 5 months ago because I could no longer provide the 24/7 care she needed. At my first support group meeting, a wise member said to me if you had any plans to travel in the future, go now because next year may be too late. So Crush ... buy those tickets. As others have said, you've come to a great place for people like us.
Crushed--I have been on vacation and may have missed this--but did your wife get a more specific dx than "dementia"? The reason I ask is that it is more straightforward in treating symptoms (you mention crying/sobbing/anguish) if the disease can be narrowed down to AD vs FTD. etc. Regardless, her physician should be addressing those issues with anti depressant/anti anxiety/anti psychotics, whatever combo will work best. Sadly. the best we can do for our LO's with dementia is to get them to a place where they are content emotionally. It doesn't happen overnight, but I know from experience that it can be accomplished by a doctor who is well-versed in using the appropriate drugs.
We did quite a bit of travel after Steve's dx and I'm happy that we could. He enjoyed it in the moment. Be prepared, however, that it won't be like traveling in the "old days". As Joan (well) put it, it's just moving the work of caregiving to another location.
DH was 61 and I was 58 when he was diagnosed. I feel cheated. And resentful. I never did retire, just quit work with no pension and am living off our meagre savings. They won't last more than a few years then I guess I'll sell our home and live off that. There is a good chance I may end up destitute but right now I don't even care. This diagnosis has me reeling.
@marilyninMD She had a psychiatric evaluation that concluded she had no medication indications for depression. My Chess partner is a PhD neuropharmacologist with extensive experience in depression who concurs. DW was on statins when the first symptoms occurred. To say she has an aversion to most pharmaceutical therapy is an understatement. She does not have the typical reaction of people with depression. DW likes comedy clubs, sex and family gatherings. She loves photographing animals and playing with our grandson. She simply knows her situation is lousy and that gets to her. I just booked a trip for March
Added comment on DX . DW was first evaluated at Johns Hopkins in 2010 With MCI-Amnesiac type. I was carefully counseled as to the difficulty of distinguishing among types of dementia. DW has had three full rounds of Neurocognitive testing. Possibly due to her stunning intellect she shows up with wildly different scores on different tests in the same test battery. She was described as a case study for cognitive reserve. She has absolutely no "physical" symptoms and her personality and affect are unchanged. Executive funciton is still very good. e.g. She always puts things in a suitable place but forgets she put them there. She has a clear concept of buying something on amazon or EbAY but cannot execute the steps from memory. We recently did some shallow safe scuba diving, but I had to do the periodic underwater checks. She takes lovely pictures but I have to set up and unload the cameras. I send case notes to the Neurologist regularly documenting her activity.
I was 53 and my husband was 63 when he was diagnosed with Parkinsonism with mild cognitive impairment. He was able to get disability retirement from his work, which was a big help. I'm now 58 and still working, mostly possible because our 23 year old son didn't make it in college and is living at home not doing much but helping with his dad. Early on we did a home renovation to make one level of the home wheelchair ready, and that has been a huge help in allowing my husband to still (using a walker) be able to care for himself part of the time.
Note on Social security disability- I thought I would add a special note on SS disability. DW's last day of "work" (sorting her scientific papers for the National Library of medicine) was April 2012. She was 59 She went on sick leave. We applied in November 2012, listing April as the date of disability . We had a very good SS attorney. We applied for work disability in April 2013. We had to blizzard both offices with constant medical updates FINALLY in Nov 2013 we got both approved. You would have thought that a DX of MCI-Amnesiac was "disabling" in a supervisory physician but until we got the dementia DX nothing moved. In December we got over a year's back SS.
1) Find a lawyer who knows the system SS has a very fair system of allowing legal costs. it worked out as a 20% contingent fee on back benefits. 2) send every piece of medical paper you can.
We are a couple under 65 too. I am 63 now and DH is 66. He was diagnosed at 64 already in moderate Alz.
Yes, I feel we are cheated out of all the retirement plans we had worked for. I try not to feel resentful of others but sometimes the feelings just are,
marilyninMD, ring, Lorrie, Aunt B and paulc are exactly correct.
I will just add that being an under 55 couple is worse. I'll just mention three things: 1. H could have benefitted from psychological attention to his behavioral issues. But he was not eligible for geri-psych admittance because of his age. 2. Finding an assisted living facility for someone barely 50 is next to impossible. 3. H was on SSDI; as surviving spouse I cannot receive benefits until I am 60 and then it would be on a reduced scale.
I thought I had come a long way but find this topic upsetting.
I can certainly relate to this.....my husband was 49 when things just weren't "right". It took a couple of years to get a correct diagnosis. So, I was 48 when the "fun" started. I worked for a couple of years but then had to stop working to stay home with him. It was heartbreaking....I loved my job and didn't like caregiving.
I met all the same roadblocks.....he is too young for daycare, too aggressive for daycare and too aware of what was going on to be fooled by anyone or anything.
He died at 61 after being in a vegetative state for 5 years. I was 60 when he died and felt blessed to have survived.
My troubles seem so much less when I hear of such early onset as 40s and 50s. I read a blog called "missing Jim" about a young family struggling with children and a young husband with Alz. It is excellent as the wife and mother us amazing in her strength to advocate for Alz disease in a very proactive manner.
I am constantly touched by the compassion of new, old, widowed members of This website. Actually, all if have met who deal with this disease are very special people.
DH was 58 at dx. Our youngest DD was 14. And ended up having to help watch her dad as time went on. She will be 18 and out of school this year. DH was 62 when he passed. I am 54. Along the way I had to give up my part time job. And now I am jobless and have to wait till I am 60 to collect any SS. And sadly we are not the youngest.
crushed - I got my hb qualified by myself - no attorney needed. Had no problems thanks to all the many post in other threads about how to do it. Hb was first diagnosed with MCIa but quickly changed to 'dementia of the Alzheimer's type' when we got to a neurologist that specializes in it. Every doctor visit I get copies of the medical records. I had all these when I applied and sent copies with the application. It was advised on this site to do that because some times doctors delay in sending the records. When we met with the doctor from SS he said right off there was no question, then we (him and I) spent most of the appointment chatting about the future. Thankfully he did not get too detailed about what was to come - even though my husband thinks he knows what is to come, the nitty gritty of it he does not.
@ Charlotte We had the problem that she was on sick leave (ergo employed) and we did not have a dementia diagnosis. She also still had a license to practice medicine. (naturally she was not practicing ) However the paper trail we created got us 15 months "back benefits" when the diagnosis came through. So she got both SS and sick leave for the 15 months. I fully agree that a person with a documented dementia diagnosis goes through very quickly.
Crushed--I'm not a doctor, but crying/sobbing/anguished behaviors seem to indicate to me that she needs pharmaceutical intervention of some sort to alleviate her misery. My husband was also dx at Hopkins with MCI, probable AD. At dx, he was put on Aricept and Celexa (anti depressant) although he showed zero outward signs of depression. He is still on Celexa after 8 1/2 years, but has never cried nor shown the typical depression symptoms. I understood that depression often accompanies dementia due to the changes happening in the brain. If you can get a copy of the book "Practical Dementia Care" by Peter V. Rabins, Constantine G. Lyketsos and Cynthia Steele, it explains this concept better than I can. Even if she's not experiencing clinical depression, but rather, clear self-awareness of her situation--I wonder if the meds would help her.
A suggestion--check out the search feature of this website. Many of the issues related to younger-onset dementia have been explored in prior threads that may help you.
thanx We have an MD appointment next week, I will follow up. The problem of course is that, as a physician and unlike Charlotte's Hb , she does know what is coming. She walls it off(who wouldn't) but she knows.
Every day I reassure her that she is "doing fine" with the unstated caveat of "for an early dementia patient" . Everyone works around her. I make the appointment with the hairdresser. I take her. I pick her up and pay. But we retain the illusion that she can handle it herself. Everyone involved including the hairdresser "knows" I pick out clothes etc for events for her. OK I'm a guy I think they match. Fortunately I have daughters and a smartphone DW looks much younger than she is. She fits her college clothes. She does not fit anyone's stereotype of a dementia patient. She smiles, she laughs, she does not ramble. She simply does not remember things like her clothing size, or the way back from the ladies room.. it's easier on trips. It doesn't matter if strangers know. I ask for help as needed. We are still at the stage where she can "function with help" in a wide variety of settings. I know from this source and tending to my own mother where it is going.
I am probably the one who needs anti depressants. I will ask my MD
Crushed, I think it is common practice for MD's to prescribe an anti-depressant such as Celexa along with Aricept and/or Namenda in the early stages of this illness. My husband was given Celexa when he was first diagnosed with "pre-senile dementia" almost 6 years ago, however he is no longer on it. He's had many behaviors but luckily crying, sadness has not been one of them and I am grateful for that.
Enjoy these times where she is still so very social and functional. When my husband was in the early stages, he didn't fit the dementia patient stereotype either, actually most with younger onset dementia don't fit the stereotype because they are so young
LFL is absolutely right in her last sentence. It's another factor that makes this road so hard.
Crushed--have you contacted your local Alzheimer's Association chapter? My chapter (and others) have special support groups for younger-onset people with dementia and their care partners. Those groups address the unique situation the members find themselves in, as well as providing support to both people.
It is very common for dementia caregivers to take anti depressants--it's a personal decision--some of us go for it, some don't.
When my husband saw the first neurologist in Las Vegas he prescribed the galantamine and prozac. It was obvious he had little knowledge of dementia or MCIa as diagnosed. We packed up the motorhome and went back to Vancouver where he got in the dementia clinic at the VA. His neurologist asked me if he was depressed or upset. I said no so she took him off the Prozac. As others have said I think many automatically think they are depressed.
My DH was depressed and alternated between crying and trying to cover up by getting defensive/angry. It was painful to see him so scared and sad. First med the neurologist gave him was Zoloft while we were in process of testing. He is still taking it and at least he doesn't cry anymore.
I felt the need for something to take the edge off my anxiety and situational depression . So, doctor felt it was better for me to take meds for that than affect my physical health. Of course, I am still sad and have some anxiety. But, without Lexapro I don't think I could be handling this as best as I do.
Just my experience, we are all different and must know our own needs. Your experiences and DW symptoms are much like ours last year. I feel for you.
Crushed---everyone here has given you great advice and there is not much I can add other than you are definitely not alone. My husband was 53 when diagnosed, I was 49. He immediately retired (he was an attorney) and fortunately had excellent long term disability benefits and he easily qualified for SSDI---all we did was send the huge packet of medical info we had gathered for his private LTD plan to SS and they approved him. He was on Zoloft for about 6-7 years---he lost the true realization of what was happening to him fairly quickly, but I figure it still helped----and for 2-3 years we were able to take some nice vacations together, visit family, he had lunch dates with friends---then, after a hospitalization, he declined rapidly and I had fulltime paid caregivers for him at home. This past fall, after he would no longer walk, one day he just refused to stand up, we moved him to a nursing home. He was diagnosed 8 years ago this month. He no longer speaks, but seems to "recognize"---a relative term----familiar faces. And he has a great appetite---in fact, we have put him on a diet since transferring him has become so difficult and he is putting on weight. He will be 62 in April. I sold my house and moved to a high rise (my daughters are in their 20s, so just me) and visit him daily. One last thing---about year after he was diagnosed, my local Alz association started a young-onset caregiver group after meeting with 4-5 of us spouses under 65 to determine interest----it has been invaluable to me. It is all spouses and a few siblings----if you can find such a group, I highly recommend it.
I would add to also check out the Alzheimer's Foundation of America (AFA). The Alzheimer's Association had no support groups available where I live for people with EOAD/YOAD), but the local branch of the AFA did and my wife and I attended weekly support groups ... she for those recently diagnosed and my group was solely for spouse caregivers. I could never have gotten through these past 5 years without that weekly group! And although our last international trips were difficult, I'm glad we took them. So buy those tickets!!
My partner started showing alarming symptoms when he was 58 in 2005 and I was 54. He became unable to work, and It took a year to convince him to see a Dr. and a year to get a diagnosis. He is now 67 and I am 63. He had anosognosia (lack of insight) which isn't denial, but the inability to see that anything is wrong, which is common (to this day he takes medication if you tell him its his vitamins, but not "medicine" because he doesn't believe he is sick). After the meeting for the results of neuropsychological testing, where the Dr. kept reiterating how profound his memory loss was, he said, "well that was a waste of time & money". He was getting lost and changing fast at the point we got diagnosis. In retrospect, the problems probably started in 02, but were subtle. He is probably in mid - late stage 6 now. We had lots of plans to travel, and saved for that, but the one time I took him on an overnight camp out that friends have annually, he woke me every 1/2 hr. all night, and it was obvious travel would be impossible. After diagnosis, he didn't want me to tell anyone he had Alz and I tried to comply with his wishes, which made everything more difficult. Once he asked what was wrong with him & I tried to explain, and he got so upset saying how terrible that was, and got depressed, and then completely forgot all about it, so I never went there again. I found the literature and support at the time didn't really address many of the issues that are quite different for EOAD people. I was able to get him SSDI myself, and Medicaid, since we are not legally married. (We have been together since 1985, so this would be our 30th year). There was no EOAD support in our town. Even the nursing home he entered 3 years ago didn't seem to understand how to deal with a person that was young and physically strong with energy, but serious limitations and needs for care. They consistently overestimated his abilities (so care was poor) and seemed to think he or I should be able to moderate his behaviors,which were why he was there. He had always hated anyone telling him what to do, and I became the hated enemy, limiting driving, using a wood stove, chain saw, you name it. Once he was in a nursing home, he was loving again. He was giving Celexa, an antidepressant and Aricept when he was diagnosed in 07. Namenda and then Ativan were added later. We went to a Memory Impairment Clinic at a teaching hospital after the neurologist, to get a 2nd opinion and eliminate other dementia causes, and determine type of dementia. I should say, I was trying to find out, since he didn't think he had anything wrong. EOAD was difficult for us because I needed to continue to work, and he wreaked some real havoc on our lives and the lives of others during the time he was home, because I couldn't afford to quit work. The loss of dreams and future plans are still being grieved here. His needs have prevented me from helping my own parents in another state, to travel for business, or take care of health needs of my own. I wish there were more resources for people starting the EOAD journey, and I wish there were EOAD only ALF, that would be so good. This board has been invaluable to me, and I just lurked here for years.
My DH has been dx'd with Alz since he was 50 years. I was 49. At that point, he was on the verge of getting fired from work. He was able to get disability retirement. We knew he had the mutation for familial EOAD so it was just a matter of when.
His older brother just passed away from EOAD around 1 week ago. He was 66. My DH is now 60.
While I don't post often, I have been visiting this site soon after Joan started it. I never thought the journey would last so long.
I would recommend living in the present as much as possible and create as many good memories for yourself, grandchildren and other family members while there is time. Even though the journey has been hard, there still has been joy along the way. y DH is still at home. I work full time. For the last year and 1/2, a caregiver has been coming in the afternoon. My DH has been aware of his declining abilities. This is frequently not the case with AD. It depends on the part of the brain that is being affected. My DH was a caregiver himself for his mother starting at 13 years old. She died when she was 50 years old. So he is very aware of what is ahead. Despite this, he stays in pretty good spirits. He did start taking Lexapro around 2 years ago and it has helped him. I have been taking it since he was first dx'd.
I have learned a lot on this site. While everyone's experience is different, there has been a lot of good advice provided by many. I don't write often because sometimes it is too hard for me.
"living in the present" is my key response. I put nothing off. If we want it or want to do it we get it or do it NOW. I do remind DW every so often that we have had a wonderful and lucky life and have no regrets. We have kind considerate educated children and we have seen lions in Africa, walked the pyramids and been diving in Thailand. My favorite story to remind her is that when they were giving out the "pioneer" awards in her technical field it was 9 guys in grey suits and My lady in a stunning red silk dress. Senior Harvard prof told me "no wonder you are smiling, you get to date the Prom Queen" I tell her every day that she is the best thing that ever happened to me. I did buy the tickets after we discussed it. At this moment I try to treat DW as a full marital partner who simply needs help to get through the day. On key decisions I create a memo for her of what we decided. (this helps a lot) We tend to go back to places I know she liked and stay in places we are familiar with. We often rent apartments and we will be staying in the same apartments this year. Reading posts here has been humbling. DW can make jokes, is never angry, likes my cooking etc. She is a fun companion. I have gotten very good at buying and picking out suitable clothes. I have even learned what a "blow out" is! Thanks to all for giving me context and the ability to feel grateful for what I have right now.
You're going to navigate the actualities I believe, although I sympathize with all of us. There were four aspects that each suprised me beyond my ability.
Guilt by circumstance. You're aware of it already. It's likely a great deal more powerful over time than you might consider. Every sacrifice and every effort beyond on my part was a nuetralizer.
The behaviour of bedrock players. When fabric gets rubbed too thin by stress you can see through it and for me and most it wasn't pretty.
The limits of rationality regardless how entrenched, deep, or polished. The rational mind is the concious mind and it becomes aware after stress and emotion ground raw have already made the changes. You won't be preventing them; you will be reclaiming them in material probability.
The selectivity of perception about experience which each of us is within and which is actually the thing that will likely define much after a long war.
If this were a four quarter match then you are in the first quarter. I agree completely with your approach. This is time you both have and precious is not a sufficient word. Realize now that in the end the person who needs to be saved is you for there to be a continuance of both you and 'we'. You are the only one who has knowledge and memory of her as partner. The authorization of that inside is a struggle for my emotions; but, entrenched rationality is what it is and I pick up the crying toddler and carry him.
The greatest test I have ever faced is me now - not caring for my love in adversity.
Glad you bought the tickets. I think Wolf is a wonderful wordsmith, and he said it all in his sentence - "This is time you both have and precious is not a sufficient word." Enjoy.
I am renewed by red rimmed dawn I get the strength to carry on A thousand years the waves roll in For thousands more they will again But I am here, this day, this dawn I preserve them, I was born To watch this day and see this birth Of sun and sand and sky and earth I take this dawn within my heart And stretch my life And give it part Of me. my soul Of who I am And giving get a greater gift Of life as golden fleeting time But perfect wonderful sublime