DH had his 70th birthday Saturday. I am 67. Although officially diagnosed in 2008 family noticed strange behavior as early as 2004. It was easier for me to remain in a state of denial for a few years. I suppose I thought as long as I could live in denial that it would all go away. Of course that did not happen. I went to the NH and attempted to have a small birthday party. He seemed unaware of anything. He kept walking as I fed him cake. I ended up partying with a few of the non ALZ residents and pretending that I was having a good time. I now realize that I had the party for me so I would not feel guilty. For ten long years the ALZ monster has lived in this household and he is sooo real! If I could go back to the decade of 47 to 57 for me and 50 to 60 for him I would have lived life more fully, but I digress. That decade was spent working and saving for the good life in retirement. That good life never came and the savings earned is being spent for his subpar care. I surrender, you win, ALZ monster. No more parties for my guilt ridden brain. As Forrest Gump said, life truly is like a box of chocolates and we never know what we are going to get. Thanks for letting me have my pity party on this site and for understanding. Hope all of you have a wonderful fall week.
Your words express the double lives so many of us live. Cheerfully socializing at the NH or ALF and then going home and confronting the awful truth alone. We are with you, AliM.
AliM, I feel the same way. I refer to my 50's as the lost decade. It was supposed to be the time where we really put away a lot more money for retirement....the house was paid off, we had new cars (no loans), had acquired all the "stuff" we wanted (but probably didn't need) and could take an "indulgent" trip 1 or 2 times a year. Well so much for that. My husband was dx'd in 2008, retrospect symptoms since 2005 or maybe 2004 and not really earning a living since 2000, so probably early MCI or early dementia since 2000.
But we didn't know what we didn't know, did we? Should have been the decade of filling the retirement coffers. We too are spending what we saved in 17 years. Married at 33/34 saved diligently until he stopped working virtually by 2003 and me in 2008 to take care of him. I am not complaining because at least we saved, but it is so very hard to watch it all be spent on care (my husband is still home with a paid caregiver), depends, gloves, wipes, meds, doctors visits, etc.
My sister was so chastising every time we took a trip "Why aren't you saving that money for your retirement?" You're so selfish and short sighted. You'll have your retirement years to go on trips". Guess what? We've had no retirement years, only years filled with psychiatric hospitals, medication that cost a fortune, paid caregivers to the tune of $70,00+/year, now pull-ups, wipes and gloves.
Like many others here, we will not have the good life in retirement. We have it better than some and I'm grateful for that but there's no government aid coming our way anytime soon. so we soldier on.
Alim - my sympathy to you in your discouragement. But did you bring some sunshine into the life of those you shared with at the NH. There are many there I would guess that don't have many if any visitors so even a little attention is just a ray of sun. Never know how far a little kindness goes. I know it doesn't in any way fill in that void that only your dh can fill. hugs to you.
Alim, I can sympathize with you. Although we've never had a lot, financially speaking, I had hoped for at least seeing the fall foliage in New England once before I died. Also was even willing to go to Nashville or Branson with him (country music not my thing!). But life had different plans for us, I guess.
LFL, I like the way you said it - we didn't know what we didn't know. We all do what we think is the thing to do at the time.
Actually, my "advice" to any younger-than-me couples is to do things while you still can, if you can afford it (don't run up debt to do it!) I've been through the "woulda, coulda, shoulda" period, but now it is the way it is, there is no going back. It's really difficult, though to look forward when there isn't anything to see....
These stories sound just like mine. DH had symptoms as early as 2004 but was not diagnosed until 2008. I remember thinking "Why doesn't he listen?" when he kept asking the same questions or "what is wrong with him?" when he would forget to turn when he was supposed to when we were driving. I think it was because I didn't know anything about Alzheimer's. After years of research and being on this site for many years, I think I know about everything there is to know. Doesn't make it any easier, though. As for saving for our latter years instead of doing a lot of things we planned to do, I actually am happy that we have enough money for his care and, at least for now, I don't have to fight the Medicade battle. So these are the golden years????
Dear Alim, A few weeks ago my DH got Influenza A and was admitted to hospital. He has a lot of medical problems. It took a week to diagnose, but the doctors told me that he was gravely ill and would probably not live through the first or second night. Faced with that, I was afraid, but at the same time it seemed so surreal. When it is necessary, I feel I can dig down and be as strong as I need to be. But when I heard this news, and seeing how sick he was, my brain went to “if this happens now, at least he will be free”. Being his POA they asked if I would rather not give him antibiotics for his lung infection. I felt it was not ‘extraordinary measures’ to treat this. At one point I even told him that if he felt he couldn’t go on, it was ok for him to let go. But I spent all the time with him, hand-holding, and being there, and he’s back at the NH. But, it’s not right at all … he has regressed, and cries, is so agitated, says there’s nothing good for him now, says nobody will help him, and he’s scared. I am wondering if it would not have been better if he had let go last week. It’s so painful to watch the deterioration, fear, and to know he feels ‘nobody will help me’. We are older than you – he’s almost 88 and I’m 79, so I feel sad for the time you’ve lost together. Thinking of you…. I like Mim’s advice for others.
Dazed - my husband not hearing me, always repeating calling it 'selective hearing' is when I had enough and told him to go see what was going on. Was it his hearing or what. Despite family history of AD I was not thinking that. The doctor sent him for a neuro-psych testing and my husband told me the doctor said he was fine. So we left for our job in Nevada. Down there while he was at the VA, the doctor gave him a copy of the neuropsych test. He had no idea what it meant but when I read it I knew especially at the end where the neurologist recommends referral to the dementia clinic. I called the PCP there in Pahrump who ordered a CT scan or MRI (forget), then the neurologist. He looks at the psych testing, MRI and said 'he has aMCI' and here is a prescription to fill - it was galantamine. I asked him some questions about AD which he could not answer. Told him I think we will go back to Portland where they have a dementia clinic. He said good idea since the VA did not have one in Las Vegas.
That was 6 years ago, but I really believe in 2003 when he was fired for doing things he knew were wrong, that was the first indication. Then in 2006 he was verbally abused by managers of an RV park we worked at in Florida. He was never the same after that.
As they say: the rest is history.
Seems many of us left with spouses still alive were diagnosed in 2008.
With sincerity and in my most polite Southern accent I say "Thanks, Y'all" for your kind and understanding responses. Florence, I was happy to have the residents enjoy my party. Just unhappy the guest of honor would not attend! I have made friends with several non ALZ residents and frequently take small items. Cookies , cakes, seek-a-word books, pens, chap stick, and finger nail polish are some of the items they enjoy. All have family who only visit once in a blue moon. Mary75 and Vickie your comments lifted my spirits tremendously. I know you ladies have already walked the entire journey of ALZ so you truly do understand what the rest of us are going through. I appreciate all of you. You are my lifeline. ((Hugs)).
So sorry for the dissapointments.so many of us here are in decades of caregiving right along with you. After so long we tend to accept what will not be anymore. Sending hugs