Dazed and Judith feel there should be a thread where those with experience who look back would have changed what they did so there is a place specifically to share those. I searched but there is no such thread so I have started it.
Copy of Jang*'s post: (edit - it was on Anyone Familiar With This - hope that's ok Jang*)
Dazed, I would have placed Gord sooner instead of insisting I must bring him home from rehab. I then would have returned to being a wife instead of a caregiver. I wish that I had been more wifely and less caregiver. This is one of many things that haunt me. I wish I had been more patient. Unfortunately, almost all of his behaviours were his old behaviours only worse. When it is something you have dealt with all your married life and then it gets worse, it is hard to deal with...at least, it was for me. I wish I had known that his life could end so suddenly. I was sure that as he was only 67 and in pretty good health that I had years left. I wish, I wish. That is my endless mantra now.
I think this is sort of like trying to drive a car, but the steering wheel is broken. We are in the front seat and we can see what is comming at us, but we are pretty much helpless to make the car go where we want to. We are amazed at how close we come to a total wreck and then at the last moment something changes and now we have a whole new view from the front seat.
Thanks, Wolf, for starting this thread. Hopefully, several of our members will give us their regrets and some of the good things they did right. Moorsb, that's exactly how I feel. We can see what is coming at us, but we are pretty much helpless to know what to do.
Here is another thing I wish I had done. I thought of this last night when I couldn't sleep and again this morning when I went for my walk. Almost from the beginning, I kept a journal of this terrible disease. I wish though that I had kept one about me. All I can remember now are the times when I was impatient and unkind. I wish I had kept a journal of things I had done well. If I saw it in black and white, perhaps I would believe it.
I would have started self education earlier because I didn't realize how clueless most of the medical community was. Piling on drugs isn't always the answer.
I agree, bluedaze*. Didn't have a clue. However, now I do not feel guilty or berate myself for those things I might have done wrong, or didn't do good enough or didn't even know about. I did, and continue to do, the best I can at a given moment.
Thanks wolf for starting this thread. The one question I have for those that have been in this from the beginning to the end is......If and when you noticed when your spouse could no longer carry on a reasonable conversation with anyone (except maybe you in a limited fashion)....did you isolate him and not participate in activties that involved strangers? In the past six months we are no longer going to church because I saw how uncomfortable my dh was when strangers would approach him and want to do the usual church thing "greet and meet". Now he even seems very uncomfortable around family members often sitting away from those engaging in conversation. Would you have continued to encourage your spouse to be among strangers or more or less isolate your spouse?
Haven't been in it from beginning to end - yet, but when DH began to be very uncomfortable among strangers or even friends, I tried to encourage him, but it became evident he just could not/would not do it. All I try to do is keep his routine as much as possible. He is comfortable with that and very honestly, it makes it easier on me. I don't push him to do anything he doesn't want to do or can't do.
I wish I would have admitted to myself much earlier that he had alzheimers, rather than just brush it off by saying that "he just has some memory problems".
Like bluedaze* said I would have started self education much earlier than I did. Once I did learn, I was like a dog with a bone.
I would have been more understanding and less impatient with him.
I would have gotten respite earlier rather than handling his care totally on my own just with some help from my kids. I didn't find Joan's site until about a year before he passed on. I was not aware of what help was available out there as the Alz Assoc was no help at all.
I kept him at home until the end with hospice help. Looking back, I probably would have placed him the last year or so before my health deteriorated physically.
i tried to engage DH as much and often as he was comfortable with around family, but found he was more content in sitting near those who were having conversations -and he could listen but not engage. and it helped to not look at him, but let him sit without alot of attention being drawn to him. we would see him smile or not and knew he was listening without a lot of fuss.
I feel like the driver in the front seat and can see the fork in the road in the distance and just don't know which way to go... I suppose looking back, though the task was done in time, as soon as we got the DX I would have sought out the elder care attorney earlier..we made it but.....there is the risk of not getting that stuff done soon enough.
Now I face the task of looking into assisted living arrangements..there is a place where for a down payment they can be taken care of short term if I get sick..but it is expensive...then there is the issue of searching out nursing homes for down the road...the most distasteful chore next to the P&P duty.
The journal about ME is a terrific idea... had not thought of that..do have one of his changes...I could add how I feel to that too. Sometimes the neuro will ask "How are YOU doing?" which is good. I think if we don't put our own feelings down we are at a loss when asked.
Maybe it is just getting older but I have come to the point that I do not look back on my life w/regrets...but I will regret if I do not live my life every day in the future.
Hi bluedaze. My wife of 38 years was diagnosed wMild Cognitive Impairement ...a neurology term for ALZ. patients that are under 65..three years ago. I cared for her at home for nearly two years. One year ago today, she was admitted to an excellent facility in far NW MN...where she grew up and has many family members. I live in Stoney Creek, NC near Greensboro, NC. She is 62 and I will soon be 66. The best advice I received during a journey w/out milemarkers came from an FP and a Psychiatrist. ...don't wait too long to get her settled where she can get help. Advice I value more now than I did then.
I encourage anyone to invest in an eldercare attorney. I explored dozens of facilities in the area..many were very good. However, in NC, Medicaid eligibility has an income ceiling of $1,500 per month. That would mean an out of pocket expense of $7-8K per month. Not an option. However, MN has no income ceiling. I found a Catholic facility in the town where my wife grew up...excellent care, great staff...she is clean, she is safe, the facility is clean..I would live there myself. All patients are treated the same and with dignity. I contacted a St. Paul attorney to make sure all the NC legal documents would work, to assist me in making the assets conform w/MN guidelines and make application to the Dept. of Social Services for Medical Assistance(Medicaid). It took 90 days. My monthly payment is just my wife's Soc. Sec check. Everything is covered.
I will be married until her end of days. Yet, I struggle w/how, as a married man, to build social relationships w/people near my age. Just sharing a meal, a phone call at times would be of value. My new journey is beginning today and i look forward to the future.
Patience is my downfall too, by the end of the day, I'm tired, he's sundowning..I've had enough and tend to get short and cranky with Dh...I hate myself for doing that. I will try better. Day care today, this will help me go on another day.
My only regret is that I should have loved her more..I should have never sound condescending, never got angry, and should have spent more time with her.
Don't beat yourself up...You probably did the best you could and the best you knew how. No one can give their spouse the "All", it just isn't in the cards. We all are human and have a life to live too and life is good some days and bad other days and as humans we react. Maybe one of the good things about Alz. regardless of what you did or didn't do chances are she didn't remember for 5 mins. Remember regrets are part of griefing....take care of yourself....Hugs, hugs.
Please, take off the sack cloth and wipe off the ashes...We travelled the journey with you and your children and you did a wonderful wonderful job all the way down this tragic path. You were and are an inspiration to the rest of us still trying to find out way. You provided humor so as to not go completely mad yourself. Your effort to find the funny side of things now and again was not condescending, it was stress relief. We know how very much you loved your dear sweet wife..and we know how hard the last months and weeks were for you. Your wife knew how much you loved her and so do we...and we know you still love her and always will. We also know your grief and loss is very very deep. When your beloved wife died, we all felt a member of our own family died too because you opened your heart and your home to us and shared with us your deepest thoughts, feelings, humor, sadness, and showed us how to contend with our own impending disasters with grace.
We are human. I know we all regret the times we are short tempered and are so busy trying to hold things together that we know up front we don't spend as much time with our LOs as we would like to do. It is a sadness we carry now even before the final breath is taken...I know I do.. And every day I feel the loss of more of my DH..today was not a good day in that he was just sort of here but not involved..I would ask a question or try to talk to him and I may as well be talking to the walls..other days are better...but in the end it will not ever be the same again....
We miss you and your sense of humor but we also understand you are now in a new phase of recovery or adjustment. I think the more we were loved by our LO, the harder it is.....WE know your wife loved you dearly and we know you loved her more than life itself..Please take care of yourself and know you did more than anyone can imagine...if our friends and families could see what really happens in our day to day lives, it would be more revealing than they could absorb.
I really am not in a position to welcome you as I am new here too and there are many here who precede me with experience and wisdom.
I have spent a lot of time thinking, when did this start? Was it in 1999 when H made a bad career choice? Was it 2004 when he did something so demonstrative of lack of executive functioning and I was not able to appreciate it due to my depression about something else that happend (just to me, not to him)?, was it 2006 with the initial dx of MCI (still in his 40's)?, was it 2009 with the dx of FTD?, or... on and on... while medical professionals sought to label this "unique and interesting case"?
I send you so much support on the decisions you have made. Generalist and specialist neurologists say H is ready for ALF now, but: 1. he won't consent to go and 2. I don't know how I can afford it, make that how long I can afford it, at what I have estimated at $5000. per month.
Wolf, I know you have much to deal with this week. I just want you to know I am thinking of you and wishing you the best.
Abby, I completely understand where you are coming from. I was going through the great Pause and I thought all these odd changes, my inability not to get a project completed, for example, the seemingly fractured ways my days were going was me. Then when the DX came in all of these changes I now realize were a huge part of the beginning of this disease and my DHs changes that I didn't recognize for what it was. It was not until his heart surgery and the memory hiccups attached to that did I begin to see what was going on but by then it was at least 5 years in the making. There was so much he was doing that was normal and natural and everyday competent..I think looking back now it started with my saying to him " Listen to me..." I would be telling him something important for his day like reminding him of an appt he had or something and he clearly was not listening.....I wrote that off as he is engrossed in the papers or something...but no....now I think it was the earliest signals of where we are today.
Pharanque, Don't be so hard on yourself.. No matter what we do...we will always have regrets about something, something we could have done better. Caring for her as you did, shows how much you loved her..and did the best you knew how.
I would not have stayed to help my sister. We lost our jobs in 2/04 and home in 12/2004 and moved to her place where we put an RV pad in. By then her husband was showing the long term effects of his stroke. I did not want to see her 'kill herself caring for him' by herself, so we staying to help with the outside work. In 10/05 we took our first workamper job - her son was here so she had help; and summer of 06 went from NH to FL for a winter job. When that job fell through and we couldn't find another one I decided to come back to Vanc and help her since her son had bailed on her. (she put a $150,000 addition on for him which he was suppose to make the payments on the loan since she could not afford it - ended up doing a reverse mortgage). Her husband died 1/08 so felt it was OK to leave since our youngest brother was now living her. We came back in the fall of 08. March 08 was when HB was diagnosed with aMCI but we took the job anyway. But, found he had too much trouble remembering what he had to do in the maintenance part of the job, so came back. Diagnosed with dementia of the Alzheimer type 10/08. 1/2010 Art found her on the bedroom floor unconscious from a stroke. There was a definite personality change from the stroke but she was not bad to me. In fact I spent all day and evening at the hospital with her cause she couldn't remember what the doctors said. I went to the surgeon with her to be her memory. I sat in the hospital after surgery and brought her home cause he son who lives nearby didn't have the time.
I decided in June 10 that we didn't have much time left to travel so needed to while we could. We always dreamed of being snowbirds so went south for the winter of 10, got the workamper job summer 2011.
Now, as many know, my sister can't stand to see me. If I speak to her she yells to get out of her sight. She is nice to hb thankfully.
If I had know the diagnosis was coming I would have hit the road in 2004. I would not have stayed to help her. I should have known this would happen though. In 1975 when she divorced her first husband we helped her through her surgery and got her house ready to sell. Every thing was great until she moved from Seattle to Oregon with her new boyfriend. She kept him secret until time to move. I idolized her and took it hard (as did her oldest son who is 3 years younger than me) that she left a great guy for this other guy (who turned out to have mental problems). She would not talk to me. We stopped by their place in CA in 1979 but she had not contact with me. I did hear from her in the late 90s when she needed someone to watch our mother for 2 weeks. I did but then never heard from her again. When I heard she was getting married again via an aunt, she had to call for permission to tell me where she was. We rebuilt our relationship or so I thought. Now I think it was just cause she needed help. I always had to watch what I said around her but I was willing to since I had around all my siblings.
So what would I have done different? I would not have taken the 5 years of the last 8 out of hb's life to help out my sister. I should have known better - should have known better.
It is nice to see you posting, Frank. I thought of you the other day when I read about the wonderful things these researchers are doing for their mice :) http://www.vancouversun.com/health/Discovery+could+lead+memory+enhancing+pill+realm+science+fiction/5873583/story.html
I'm not sure I would have had DH go on Aricept and Namenda.I'm thinking the gradual decline would have been better than the sudden decline when they stop helping. The decline is so drastic and very frustrating for both of us. DH didn't know what was happening to him.Friends were shocked by the sudden change. Has anyone else had this experience?
My wife was on both for a period and I requested she be taken off of both drugs. She is likely still on too many meds and no one knows if there could be contraindicators. Managing health and managing behaviors through pharmacology is a very slipery slope. These two meds were not helping and no change was evidenced when she went off of them. But, as we all know, no two patients are the same. Clinical evidence now indicates these drugs may only help a few if given very early and then, maybe help for only a year. The risk has also been noted that some patients will change rapidly when taken off these two drugs. In fact, many clinicians are now advising to not start these meds.
As we all know, there are very limited methods to test for frontal lobe dimentia and, as I learned, not all patients with dementia have alzheimers. I have one clinician that believes my wife has Picks disease. Very similar behaviors, no treatment available and the same outcome. It seems the more we know, the less we know.
There is a news article today about a group developing a plan help those needing care and to find a treatment/cure for alzehiemes by 2025. If not for us, for our children and those that will have to come to grips w/this in the future.
yhouniey - even people that are not on the AD drugs can sail along then nose dive. Actually, I would prefer a slow minor decline but when the time comes to go down fast. In my thinking there would then be less time living in limbo unable to do much but eat, sleep and poop.
I don't know which is better or should I say, which is worse. I hate the unknown. What I do know, is my dh has gone through all the things I can read about in stage 5...how long he will be in this stage...who knows, but I know that after this it is really down hill.
Many do not get much out of the stages or it gives them little comfort. Personally, it has been a big help to me. I have been able to follow my dh's decline almost like a text book case knowing what I have learned from the stages. I am amazed that my dh has been as good as he is considering he has a bad heart and COPD.