I'm wondering if anyone has reacted to the subject transition the same way I have. My husband started slipping into the middle stage at the beginning of 2009; his mood improved so much that I actually told his doctor I thought he was getting better! Then the functional decline started setting in--most notably, agnosia, or the inability to "see" things; some verbal skill decline, a tad of apraxia-- loss of motor skills. As time has gone by, however, I have found that although I need to be much more "hands on" with his care, it is such a relief to have his normal, sweet disposition returned. The anger and rage that were present in the early stage are gone--with no change in meds.
This is something I never expected. I would have thought, that like most illnesses, the progression would become harder and harder for me to deal with emotionally. While it is sad to see him able to do less and less independently, there's no question in my mind that the middle stage is much easier to handle. The driving issue is FINALLY put to rest, he accepts help from me readily (sometimes even asks for it). I find that issues that would have been huge problems in the early stage are no big deal now. An example is giving up contact lenses--one day, he just stopped wearing them and started wearing glasses all the time. A few weeks ago, he gave me his wedding band and told me to put it away, someplace safe. His watchband broke last week, he gave me the watch, hasn't asked about it since. I am amazed!
thanks, Nora, I hope so too. He was always a gentle man until AD came on the scene--then the personality changed, as Joan has written about extensively. That was the hardest part of all of it for me--seemingly suddenly, having this stranger exist in my husband's body. I never knew if the man I married would return, but he has (albeit in a more childlike form, but I'll take what I can get)!
As my dh progresses into stage 5 (frighteningly fast) it seems to me that he's becoming easier to manage in some ways. But at the same time he has some belligerence that the Risperdal hasn't completely dispelled, so that the answer to almost every suggestion I make is "NO." I've had to get used to not asking whether he would like such and such to eat, just announce what we're having. Bath/shower is as big a problem as ever, it's always NO. Last night I wanted him to take a bath with me at his bedtime, he refused, promised he would do it in the morning. At 5 this morning he got up and reminded me that we were supposed to take a bath. I had been awake for a while anyway, so I thought "Strike while the iron's hot" and got up and we had a bath. I was so happily surprised when he got right back into bed afterwards. We were able to sleep a couple hours more. The driving issue is at rest, he's pretty good with company, in restaurants, movies and concerts. That's a lot to be thankful for. It makes life OK, livable, enjoyable.
Marilyn, I truly believed that the early stages were the absolute worst. My husband, who was always the most wonderful and loving man, turned into someone I didn't know and didn't like. We had a terrible time....I couldn't handle his anger and inability to bathe, change clothes and his fighting me at every turn. I finally had to find a facility that would take him so that I didn't kill him or myself. He spent over two years there and then when he became bedridden and unable to do anything for himself I brought him back home and took care of him for the next 3 years until he died. To me that was the easy part...as least he couldn't hurt himself, hurt me, or get into any "bad fixes". So, yes, I believe it does get easier.....but along the way you have to remember to try to look upon these declines as dispassionately as possible or you will not make it. Easy to say, much harder to do.
If you were to go back to the first few postings of mine, you'd find me saying that I was just enduring, that I felt nothing for this grumpy, cold person. He's since turned into mostly a sweet, gentle, loving person. But in the last few days he's been grumpy again, mostly because he's physically hurting with his legs, his headache.. it's getting very hard to move him from place to place.
Marilyn, Jim's transition was also slow and gentle. The worst part was him losing the ability to walk. He has just begun to slip again. His memory is getting worse, as is his breathing. I just take it one visit, one day at a time. I try to find the joy in his eyes and savor his hugs. That's all we can do.
We frequently get newbies in here who are afraid to complain about how hard their situation is in the early stages because the rest of us have it so much harder. It is not true. Some stuff is easier in the early stages. Some stuff is harder.
My husband is in stage 6. Late in the middle stage. Early in the late stage. Some things are much harder. He is losing functions and I'm having to make decisions I didn't want to have to make. Some things are easier. These days I don't have to get him to agree about what we are going to eat. He can't make decisions. Sometimes it is just easier to just make those decisions myself.
SInce G has FTD, I don't know what stage he is, except the pain in the rear stage! He is quite generally disagreeable, dislikes most food, barges ahead into difficulties...so opposite of his former being. He effectively destroyed our, until then, nice Thanksgiving when he lashed out at our poor unsuspecting grandchildren for nothing at all. Our SIL is a complete love, and handled it beautifully, but I was quite undone...and furious! And he still thinks he had cause to yell at them...for feeding our dog her treats ! Oh well.
We drove a long distance to attend our son's wedding reception. Once there he had a very public temper tantrum and refused to go. Screamed terrible things at our kids. They have never forgotten it. Today he is near comatose in the final stage of the disease. Is one stage better than another?
Sandi--I've never heard of a story like yours, but I can relate. Have there been other members here who placed their spouses to get through the earlier stages and then were able to take them home later on, like you did? It is an interesting solution, but not one most people would expect.
Marilyn, probably no one else would do what I did....I am sure everyone thought I was completely nuts and quite a few told me I couldn't do it. Well, that's all it takes....for someone to tell me I can't do something...LOL! But, seriously, the bedridden stage was the easiest. He couldn't get up, couldn't talk, all he did was eat, sleep, poop and pee. I had no trouble rolling him to change him and I had someone in a couple of times a week to get him up and into a shower. I did things I never thought I would be capable of. But, I spent way too much time at the AD facility watching him lie in a bed....when I could watch him lie in bed at home plus save $7,000.00 a month. I figure I saved myself over $250,000.00 by keeping him at home for those three years. You can buy a lot of help for that amount of money. I was able to get out and do things and even take vacations because I had good help at home.
One of the things that hit me about Sandi*'s story the first time I heard it was that line about the fact that you can hire a lot of help for the amount of money you spend for a nursing home. Although Sandi* didn't have as much help from hospice as one would have wished, people also forget that they have that available too. And I think that hospice organizations are also getting to understand the dementia situation better than they used to.
Sandi--I think you were pretty smart about the decisions you made. One thing I've observed--this illness hits us so hard emotionally, sometimes it's hard to make the most practical choices. Something you said earlier in the thread--to look upon the declines as dispassionately as possible--is the key. What I'm trying to do is to attempt to keep my emotions in check enough that I can make wise choices (balance love/loss/compassion with pragmatism). It will benefit my husband, as well as myself, if I can do that. Time will tell.
Marilyn, I bellieve my husband and I were in a support group with you and your husband. Due to my work schedule we were not able to attend, and also my husband said he was not comfortable. Now as the disease progresses I told him we have to attend and my boss is willing to make arrangements so we can. I am at a point that I am so frustrated, burned out, angry, depressed, I don't know which way to turn. He needs care during the day when I work, family is not stepping up to the plate to help, all our friends work. We can't afford anyone to come in or daycare. He is gets very angry and frustrated. I am at my wits end. Now that winter is here I am very concerned.
Rosemary--Yes, I remember you both. I'm sorry to hear how things are going. I sent you an email with information about new support groups for young onset/early stage that started after you all stopped coming and a contact person at the Alzheimer's Association. Please call her and see which group will fit your schedule--I know that attending will help you.
RLK, one more thing to do. Call your local Area Agency on Aging. If you can't afford day care and need it, it is possible that you qualify for sliding scale.
RLK, I am very interested in hearing how you cope with your situation. I will soon be in the same boat. I am still working and NEED to work to support my DH and son. Our finances took a total dive when DH could not work and we have been going paycheck to paycheck. Need to work for health insurance coverage also.DH is on medicare now at age 58 but I will need to wait until 62 at the earliest. Soon, DH will be needing more attention during the day when I am at work. Right now, he seems to go into a state of suspended animation while I am gone. As we all know, no initiative or planning skills. I leave a list of "possible" things to do during the day but it is up to him to accomplish any task. Recently, very little attention to the list. The winter seems to make everything worse for him, less light, less interaction with the neighbors, even our dog want to hibernate! So, I assume that by next winter, I will be looking for additional help. I hope you keep posting about this topic so I can see what someone else has done. He doesn't really need daycare yet, and the facility that I had my Mom (age 85)in recently seems inappropriate for his age and stage of disease. I will be following your posts and wishing you success. Please let us know what you decide to do.
RLK--another idea--at all 3 daycares my husband has attended, there were people attending whose fees were paid by the VA (was your husband in the service?) and some through Medicaid. Some of the people attended as much as 5 days a week. Have you spoken to an elderlaw attorney re Medicaid eligibility?