My husband was diagnosed with Alzheimer's a year ago. I knew something was wrong much before that. My world has been shrinking. My husband gets very upset at my friends when they talk to me in person, or when I talk to them on the phone. I never have any privacy to talk to anyone, i.e. at church activities. He follows me everywhere. I work at a respite center and take him there and that has become a problem, because he always watches me and doesn't like me talking to my supervisor or co-workers. How does one handle these kinds of behavior? Thank you so much
First, let me welcome you to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". You did not mention your husband's age, but if Early Onset applies ( diagnosed before age 65), there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. It now has a great "search" feature, so all you need to do is type in what you are looking for, such as "stress", "loneliness", or anything else, and those blogs will come up. Log onto the home page daily for new blogs; news updates; important information.
What you have described concerning your husband is called "shadowing" with some paranoia added. It is extremely common with AD. Many of our members have been through it with their spouses. I am bringing to the top some of the previous discussions on "shadowing" for you to read until our members come along and answer you.
Monika, welcome to the site, glad you have found us. It's the right place to come for information and support. I recognize your problem but have not had to deal with the same problem myself -- our social interaction is usually with other couples, and I can get one of them -- usually the guy -- to stay and talk to dh while I invite my friend into the kitchen to keep me company. Is that an option for you? Or is it possible to find someone at the respite center who would pay attention to him to get the pressure off you? I'm also still finding it possible at something through mid-stage to leave dh alone one morning a week for an hour or two while I swim and chat with my best friends. this was becoming almost impossible before he was put on Risperdal (relieves anxiety) and I don't know how long I'll be able to continue doing it. I hope others will be along soon with help for you.
Thank-you for your kind comments and warm welcome. My husband is 68, I am 61. my husband's brother also has Alzheimer's. He is 5 years older than my husband and was diagnosed 5 years ago. His brother was still travelling 2 years ago, now he is in a nursing home. He can't walk, needs help feeding and can't speak much at all. I have to get ready for work, and I am thankful for this organization. So many lovely people. Thank you again.
Welcome to this site...it is wonderful. My DH did the same thing. He did not want me to talk to ANYONE! Would be rude to the person I was talking to...even our children. And the shadowing, went on and on. I led a prarde every where I went...DH and three dogs behind him. When cooking he would get between me and the stove, wait outside the bathroom for me etc. It is a stage that does pass, even if it seems to last forever. All we can do is pull up our big girl panties and deal with it until it does pass.
Monika, the behaviors you have described are called "Shadowing" in the AD world. Ithink it is one of the most difficult things for we caregivers to get used to, because it invades our privacy and takes away even the small moments of freedom we may have. As far as I know, there is no way to stop them from doing it. The only thing I've had success with is to hire an aide to keep him company, and this distraction allows me to go out or stay in another part of the house without my husband constantly being at my heels. I use this time to do personal business, talk on the phone, etc. Since he's used to me going out most days, I think he forgets I'm there if I do stay home. Having the aide with him provides comfort and reassurance to him that he's not being left alone. I know he is afraid to be on his own, he has pretty much told me that and is always reminding me not to forget him. Some caregivers also hire college or grad students to do the same thing, also people hire drivers to take their LO's out. The latter suggestions may work better if the person with dementia is in the early stage and wouldn't tolerate a traditional aide.
My DH had no problem with me talking to other women but let another male, be it adult or older teenager, even our 15 yo. grandson who is over 6 ft. If we went to a gathering and another male stood next to me or heaven forbid gave me a hug, it didn't matter where in the room he was, within minutes he was right there. When we visited my sister and my nephew hugged me, DH got between us and told him in no uncertain terms that "That is MY wife". It actually be sort of a little joke about where is "B" don't worry he'll be here in a minute.
As for the shadowing, I would get so frustrated when trying to cook and feel someone watching me. Even going to the bathroom was a problem because he would stand outside the door and ask if I was going to stay in there all day.
Now I wish I could feel those eyes watching me or hear him ask when I was going to come out of the bathroom.
Joyce, did your husband pass away or is he in a home? I can imagine that once this is over I will have regrets and wishes that I'd done things differently. So many of you have been ahead of what I am facing now and you have grown and learned.
My husband's dad also had the AD, (he was in his early 80's)--that's what got me started in Alzheimer's. I have an M.A. in Gerontology, I worked as a Program Coordinator in an Alzheimer's unit, I was a Nursing Home Administrator, and a teacher for older adult programs in various settings (including Alzheimer's Facilities). It is so much easier to do these things, interact patiently with clients, if it is not your spouse. I think I used to romantize AD a bit, "Living in the Moment" , etc. this was because I wasn't living with it 24/7.I'm learning to understand the "other side" of this disease. I used to think that my mother-in-law should do "this" or "that", "why isn't she doing xyz".
I hope that at some point I will be able to help others through what I am learning and living right now.
What is painful is that I KNOW I'll have regrets, I can imagine myself thinking back at this and saying "I wish I could have..." Yet, one is limited as a person. One gets tired, depressed, one has needs, habits, selfishness, etc. that limits what one could really do. I am giving up my last job working in a respite unit 2 x a week, because my husband always goes there with me to and I can't work there with him constantly watching me and getting upset at me. This will give me some more mornings to myself.
I've also joined a support group, made contact to some volunteer agencies, and will set up some more respite through a paid caregiver agency.
Over the holidays when we were together 24/7 I came to realize what is was to have caregiver burnout. I felt like exploding, so much tension building up in me. I had to leave the house and drove somewhere with my care to vent and call some friends.
The emotional roller coaster once is on is amazing. Perhaps its like the weather, passing storms, sunshine, rain, earthquakes (I'm in California).
Monika, My husband passed away feb '09. He had struggled through AD for over 12 years. I was lucky in that I was able to care for him at home, with the help of hospice for the last year he lived.
I look back now and think what if? I did make use of the monthly respite that hospice provided and now I think back and feel guilty for ever placing him somewhere even for one week a month.
Monika, I wish you were in my small town setting up a program for day care or respite at the Senior Center or nursing home here. We need it; if I were qualified and knew what I was doing, I'd bite the bullet and get something organized.
I don't think I have welcomed you. So welcome to this wonderful site where you can vent and ask any questions. My husband is 60 and was diagnosed with FTD at the age of 58. I'm 51.
Just for your information, if you see someone's name with an * next to it, that means they have lost their loved one.
Joyce, another way to look at it: if you had not used the respite, you may not have been around to care for him that last year. Stop with the 'what if' because that will do nothing but drive you bonkers. You did what you did and did a good job. You had a long journey and gave him your best.
My MIL refused respite or any help at all. She killed herself caring for him in 2001. It is now over 8 years later and he still is alive (so to speak). I am sure if my FIL were able, he would wish for her to still be here.
Monika,I too was going crazy with my husband not letting me out of his sight and getting upset when I talked on the phone,but after reading all these discussions,I realized it is a stage of this horrible disease.I pray every morning for the patience to get thru the day and be thankful my husband is not worse.You canonlytake one day at a time.This group has helped me immensely,I am so glad I found all of you.
Hi Monika. I am so glad that you found us! This is a great place to come to when you need a cyber shoulder whenever you need or want to talk, vent, or ask questions.
This website has given me an outlet for my fears, my questions. It has given me answers to some of my questions. I feel very lucky to have found it. I actually feel calmer than I did before. Some days I just read and don't write, and even that helps. It makes me smile some days and even makes me laugh out loud at some of the stories that are told. Now, you are lucky to have found it, too.