I invite you to read today's Blog, which is about focusing on what we and our spouses who are still functional, can accomplish before Alzheimer's Disease takes away our choices completely. It is based on the movie we saw this weekend, The Bucket List. What's on your list? Sid is thinking it over, and is trying to come up with a few ideas.
Joan, I think everyone should have a bucket list. When our kids were small we visited Disneyworld many, many times...I think my husband enjoyed it more than the kids...and he always said that he couldn't wait to have grandkids and take them to Disneyworld. Well, AD intervened even before our first grandson was born, but I wanted to give my husband that experience of seeing a grandchild at The Magic Kingdom. So, in 2001, I took the whole family and we flew to Orlando. Grandpa was doing pretty well and I think he got to enjoy the week but he was sure lost a lot of the time. But, I knew that if we didn't do it then, it wouldn't happen. And I was right, because in 2002 he had to be placed in an AD facility for three years. Now, I get a sitter to come to the house every year and we all go to Disneyworld to carry out a Grandpa's wish to have his grandkids enjoy the "Happiest Place on Earth!"
My wife had to quit work in 1998 due to her dementia. Even though she was not to be diagnosed for many more years, I knew she would continue to get worse. So in 2000, I had used my vacation from work, and took my wife and daughter on a whirlwind tour of the Four Corners in a RV. She always wanted to go out west and she held many memories for a few good years before dementia really set in. I was elated that we could manage the trip on our finances and give my wife at least one of her fondest wishes.
I would be trying to do more if we didn't have 2 kids still in HS, and their schedules. Next year, one left at home. Maybe we'll try to do a few things. It's tough, but I'm really wondering--once our kind of irresponsible 15 year old is competent to leave at home--whether Jeff will even be able to enjoy it.
M liked to visit her childhood farm location and to stroll around the square in Denton, Texas, about an hour's drive from where we live. We last did this in 2005. That was the last trip that she requested.
Nowadays, she sits in her favorite chair and reads or naps. Most of the time she knows who I am and that she is at home.
Our daughter married a Frenchman and lived in the Pyrenees. We went to visit every year but the time came when DH could not remember ever being there, even w/photos showing him in the home. I like to be in new places, I just don't like having to go there and DH never wanted to go to a foreign place or too far from home. I now know it was all part of his fear, knowing he might lose control, get lost, not understand things. But I didn't know that then. When it all became official, I told him, "We can do anything you want to do, go anyplace you care about, just tell me what and we'll do it." He said, "All I care about is you me and the kids." I agreed and thought he had his priorities straight. By then we had pretty much stopped going to France, he was too hard to travel with. He enjoyed the family while we were there, but they always came here so his relationship w/the g'kids was good even tho we didn't go there anymore. The g'sons were about 15 & 17 when he died, so they have good memories of him, & some sad ones, but I am grateful they knew him.
I'm making a bucket list for myself. I've worked my fanny off all of my life. Had my own business which means I worked 50/60 hours each week instead of 40. Kept telling myself that when I retire, I was going to do all of those wonderful things I had set aside, for kids and work. Now all we do is stay home, go for lunch, or an occasional movie. "J" doesn't want to go anywhere, doesn't wish to see anyone, even family. Didn't even before AD. Had a million excuses. What keeps me going, is hope that I won't be too old to enjoy some of those things on my list, when I finally have the opportunity. Keeping myself healthy. Keeping the positive attitude is the hardest.
My husband and I retired in 1992 and 1993...traveled all over the US fpr several years until in 1998 he could not travel anymore. We even went to Montreal and Quebec which was a wonderful experience. I am thankful we were able to do this, we took up golf and played every day. My sweetheart even had a hole-in-one his first year of golf.
I now would like to go to Hawaii before I die...I will never be allowed in this life to do anything with my dear one but would love to see Hawaii if I can get a friend to go.
This is all so new to me. My husband was diagnosed with dementia six months ago and has been continuously going downhill since. I retired a year ago with the expectations of traveling, enjoying retirement with husband (who has been retired for 11 years). But it is not to be. I want to have a "Bucket List". Loved the movie, by the way! He has withdrawn, become obsessed with his illness. I am constantly calling his doctors at his request for new meds. I have tried to get him to do things but all he says is that how can I talk about going out or taking a trip when he is dealing with this. It is frustrating....I feel guilty and selfish. I just want to get as much living out of both of us before this awful disease takes over. I am trying to not be angry, not be depressed and help him in every way that I can. I have taken over everything, finances, driving...everything. He seems to be able to do things but has given up on everything.
Savadele, Welcome to this site. And so sorry you and your LO has to be a part of this journey. But you have come to a good online support group. None of us have 100% correct answers but most have gone thru similar situations and will be here when you need to ask or just plain vent. And we all deal with things in different ways but all your feelings and his are normal to AD. Seems like we are always on opposite teams with AD spouses even though we fight to be a part of the team; the winning team. Don't feel guilty or selfish. Anger I fight daily. Everytime I say I am not going to let AD get to me it kicks me harder.Just take one day at a time and know that all you can do is your best to be supportive but not to be brought down . Sounds easy when you say it fast. I know you are doing the best job on all the tasks. Just know if he didn't have AD, he could and would appreciate all that you are doing and because he has it he probably doesn't even acknowledge it.. Hopefully you can talk him into a trip. Can you twist it into it seems like it's his idea to travel.? I find that works for me at times. It is just figureing how to do it. To have my LO exercise with brain games on computer and play his video games I told him another AD patient told me she improved after playing( which is no lie ) as such and now he is playing as much as he can. HUGS to you. Pat
Savadele, welcome aboard the ship that is working hard to stay afloat! The first few months of this diagnosis are extremely hard as we deal with putting our dreams of a happy retirement on hold or away altogether. I am certainly no expert but it sounds to me as though your husband is suffering from depression which goes with this diagnosis. If you give him some time he may come around to the idea that having some fun such as traveling while you still can may be a good thing. We have gone to Europe twice with a Senior's group and hope to go again this year. It is a lot of work as we have to make all the arrangements and be forever vigilant lest our LO might get lost but I found that was all worthwhile. We have wonderful photos to remind us of the happy times. We are all with you in this.
Welcome to my website. It was designed to provide support and information to those dealing with the unique issues related to living with a spouse who has AD.
Because this is all new to you and your husband, you are both frustrated, frightened, and angry. It is impossible to learn, solve, or work through everything all at once. My advice would be to put aside "The Bucket List" for now, and arm yourself and your husband with as much knowledge and support as you can get. Talk to the neurologist about his behavior - he may be depressed, as Inge said, and medication may help. Call the Alzheimer's Association (1-800-272-3900), and ask about a Support Group in your area; ask about social workers you can talk with; ask about whatever support is available. Although never easy, the more you learn about the disease and its impact on your lives and marriage, the better able you will be to cope with it.
I invite you to click on the "previos blog" section on the left side of the website. I have written over 100 Blogs, all discussing situations and emotions we have all been through. It will help you to read that you are not alone in your feelings. Since there are so many, I would suggest reading #1, 2, 3, and 13 to start.
Also, on the left side of the website, click on The Alzheimer Book Store - I would suggest When The Doctor Says "Alzheimer's": Your Caregiver's Guide to Alzheimer's & Dementia (Paperback) by Betty Weiss or The 36-Hour Day, as good introductions to what is involved in Alzheimer's Disease. You can click the picture and purchase the book right from Amazon if you would like.
And finally, put yourself in your husband's place - imagine how upset and angry he must be. I did not really think about that when Sid was first diagnosed. His behavior was so volatile, I could not understand what was happening to him. Now, over a year later, he has been able to tell me that many of his temper tantrums were in frustration, confusion, and anger at not being able to do what used to come so easily to him. In your husband's case, rather than throwing tantrums, he is withdrawing.
I know it's a lot to absorb. Go slowly. Take one day at a time, and remember - we are all spouses who will understand and support you. E-mail me anytime. joan@thealzheimerspouse.com
Well, my husband has gotten to the point that he has either forgotten that he has AD or that he no longer understands what it means to have AD. He is very willing to make plans for vacations, etc...
We are going to Disney World this summer. We just saw Phantom of the Opera (something he wouldn't have been too into pre-AD, now he thinks is great). And we are trying to come up with some weekend trips for the summer to some places like Mammoth Cave and the like. From my perspective, I'm trying to build as many good memories for the kids as possible before things get too bad. I want them to remember their dad having fun and being full of life. Too often, AD can turn him into a real grouch. I don't want that to be all that they remember.
So, right now, we're having fun.
Leighanne
ps we found our old home movies. I am trying to convert them to dvd. I think it has meant alot to the kids to see how their dad used to interact with them when they were little. To see how excited he was when I was in labor with them. Or to watch him playing basketball/swimming with them. I'm glad we have those tapes!!
I agree we need a bucket list and not put off doing today what we may not be able to do tomorrow, last may we sold our home, bought a motor home and I drove my husband and our small dog from the west coast of Canada across to the east coast and spend 3 wonderful months together on the road, we often talk about the trip and I am so glad we went when we did as his AD has progressed very rapidly. He now can no longer sit, stand or walk and is fully incontinant as well as has a difficult time finding words for conversation. He has been in a nursing home for 2 weeks now and it is clear to see that he will never be able to live at home again. So please go out and make your memories now if you can. Kathy
Thank you all for your kind words of support. In doing my endless hours of internet research on AD I stumbled onto this site. It has been a revelation and welcome source of info for me. I have two friends that I play golf with (I took up the sport several years ago to play with my LO) who have just lost their husbands to this disease and they are a great source of comfort but as you all know every one's experience is not the same. My husband is still in the very early stages (MCI, I believe is what the doctors say he has at the moment). The independent man who played golf on the weekends and watched endless sports on TV and occasionally paid attention to his "sports widow" is now very loving and needy and doesn't want me to leave his side. That part I am happy with, although it comes at a very great price. I jokingly said to his doctor, " Can we cure just some part of this disease and leave the sweet part of him intact?" So I am familiar with the dilemna of accepting the man I know now and the man I once knew. We are going to 2 doctors right now. A neurologist recommended by our family doctor and a doctor who is doing research at the UCLA Alzheimer's Research Center. Humor??? Well, last night, my husband was calling his daughter in Michigan and couldn't get a dial tone...He was getting frustrated until I came over and offered to help him when I realized he was trying to call on the TV remote. In all fairness, our portable phone sort of looks like the remote. We both laughed about it. I told him the only person he would be able to contact on that device would be Oprah. You gotta laugh or you'll cry.
Hold on a minute! I've tried to dial the remote, too, and I don't have AD. But sitting next to each other on the end table, it's easy to confuse the two. Sometimes things are just so funny. Years ago I also went w/DH to UCLA.
I had written this earlier under another topic-- These ten years taking care of my husband with AD were made even worse 5 years ago when he was diagnosed and treated for prostate cancer, then the next year he was diagnosed with multiple myeloma (incurable cancer of plasma cells and bone marrow). He was given 2-5 years. At first, because the AD wasn't so bad, we made our bucket list. Since we are living on the edge financially, I figured we could charge everything and pay it off with his life insurance. We went snorkeling in Key West, we went snow shoeing in the Rockies, we spent a snowy Christmas in NYC, we spent some time on the Maine coast. Then after he no longer wanted to travel, I began to buy clothes for us, things for the house, etc. He loves nice clothes (doesn't everyone?). I wanted him to be proud of how we looked. And now it's completely out of control. He was recently diagnosed with a very malignant melanoma. We no longer need clothes or things for the house. We can no longer travel. Here we are near the worst part and I don't have a way to fill the hole.
Ah Bebe,Your sadness is palpable and full of despair....I don't have any sniippets of condescending utterances, only know that I understand your pain. I do know that you have some delightful memories to hold in your secret place to reflect upon that you gave your husband . You gave him a gift of adventures that many people who are supposedly going to live a long, healthy life never experience. Right now you have been given another blow and there is no apparent redeeming aspect to your new burden but you have come this far on your shared Alzheimer journey and have persevered so I know you will handle this. our lives are full of holes but with God's help we will endure to the end.
Last night we watched The Bucket List and we both enjoyed it. My husband has always been a Jack Nicholson fan, and Morgan Freeman was excellent. Of course, the movie had a good message. I didn't realize Sean Hayes was in it (we were both big Will and Grace fans--he was our favorite) and when he came on the screen, I said "I didn't know Sean Hayes was in this" but couldn't remember the name of the character he played on Will and Grace. S. immediately said "Jack" --what a shock--he has been really bad with names for a while, and now, even many nouns aren't there anymore. How funny that I couldn't remember Jack, and he could.