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Last week in a new support group I was facilitating, six care partners — all women, introduced themselves to one another. Each woman spoke at length about her husband. They brought up the struggles their husbands were having with memory and reasoning. Some spoke about the changes in behavior and personality. They mentioned numerous ways in which they were trying to help their husbands. However, when it was Roseanne's turn to speak, she said something more like this:
"When my spouse was first diagnosed, I was not thinking how can I help him, or what can I do for him, how he'll cope or what will this will be like for him. My initial response to my husband's diagnosis was, What about me? How will I get through this? Who will help me through my grief? I know this may sound selfish, but I instinctually knew I needed to take care of myself or I would be headed down a path of emotional and possibly physical decline.
"So, I immediately started seeing a therapist twice a week to work with my grief, I nurtured my relationships with good friends, I began to journal, I made a commitment to physical activity, and I took up a hobby I had relinquished some time ago.
"Now, almost 8 months after my husband's diagnosis, I can appreciate what will be required of me to transition from my role of wife and into one of caregiver. I am in a better place physically and emotionally to meet the inevitable challenges I will face. I can accept the truth as it pertains to our life right now and cope with what is. This does not mean that it will be easy or that I like it. My husband's diagnosis at 63 was, and is, devastating, but by taking care of myself I know I have been strengthened."
"We can't change the loss, but we can transform ourselves."
- Antonio Sausys, yoga therapist
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Thank you for this! I am young with two young children caring for my Grandmother with stage 2 and its hard to remember to even eat when attending to my babies needs and hers. I am working on this as we speak. I just need to b econsistant with it.
How do I begin? My husband and I knew each other since 1956 when he was a Captain and I worked for the Red Cross. He was 13 years my senior and was my protector. He told me what younger officers NOT to date. We were great friends and then we were getting serious and the army transferred him. To make a very long story shorter - he got married - I got married.He told me not to marry a man from a foreign country - Poland.
So after 40 years, my marriage breaks up and I start looking for him to tell him he was right. So when I find him, his wife had died 6 months prior to my call. So I am thinking, finally my life will have a happy ending.
We talked on the phone for 2 and 1/2 years before meeting. Then after 3 months 3 months we married. I found my protector once again. He was right about the man I had married - I was alone most of the 40 plus years of marriage - except for the 3 children I had.
After we married we had a good time - we honeymooned in Hawaii. He is a great swimmer. Still can wear his uniform after all these years. (I can't say the same). I fluffed off signs that I did not want to acknowledge. After all, I didn't really know him.
We lived part of the time in the NW where he had a home and half the year in the south where I lived and then things begin to unravel as the signs were unmistakeable. He is after all 13 years my senior.
When we came to my home I got him neurologist with the dreaded result of Alzheimers. He is on 2 drugs for the last
52 YR. OLD MALE CARING FOR 84 YR. OLD MOTHER. I AM THE BABY. REMEMBER WHEN I COULD NOT WALK, TALK, FEED MYSELF ETC. IF MOTHERS/FATHERS HAVE THE PATIENCE TO NURTURE & LOVE US WHEN WE ARE HELPLESS THEN WHY IS IT SO DIFFICULT FOR ME TO ACCEPT THE REVERSE ROLES? MAYBE CUZ I'VE NEVER BEEN MARRIED OR HAD KIDS. I LOVE HER SO MUCH BUT FEEL SO INADEQUATE CUZ I AM UNABLE TO DO FOR HER AS AN ADULT IN THE WAY SHE DID FOR ME AS A BABY. I AM DISCOVERING THAT HER CHANGE IS OPENING DOORS OF MATURITY BY MY CHOOSING TO RESPOND TO ALL THE STRESS IN A SPIRIT OF LOVE & ACCEPTANCE. EACH DAY BRINGS NEW CHALLENGES. REMEMBER THE SERENITY PRAYER. GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE, THE COURAGE TO CHANGE THE THINGS I CAN & THE WISDOM TO KNOW THE DIFFERENCE.
My husband, four children and I are caring for my 87 year old mother in our home. People ask me all the time how I can handle her with all of my other responsibilities, but in reality I know that I could not live alone with her. She forgets she has eaten and demands food and cookies all day long. She will even get up at night to look for food. It breaks my heart to think of who she used to be compared to who she is now. She says funny things every day that make us laugh and I post them on my facebook page to share with friends and family that aren't close. Reading the words of others going through the same thing really helps me to realize that I am not alone. Thank you for providing us this page, and thank you to everyone that is willing to share.
Mom is declining and now she has Hospice Care. I am trying to prepare myself for the iinevitable. I have had her now ninety years. She is a strong and courageous woman. To see her decline really hurts emotionally; but, I have a grief support group which understands and for that I am grateful.
When flying we hear: 'first put on your oxigen mask, then help those around you'... It feels right, yet, in regular life, we easily think that we must first be there for our beloved or our clients rather than for ourselves. The need for self care is crucial if we really want to be there for others, and perhaps that is the first and foremost transformation needed: to be able to be there for us first. Thanks Angela!
My husband was diagnosed 8 1/2 years ago. He is now 80 years old.
With the help of Razadyne and Namenda he has done quite well. He no longer drives, tho he thinks he can. He takes care of himself as to dressing, eating. I have to encourage him to change clothes and bathe. We are now almost to the point of not going out to eat, he brings it almost all home so he can eat it his way. My big problem is with the Christmas season I normally decorate with lights, a Nativity scene, etc outside. And I decorate heavily in the living room, family room and entry. This year he has started with: Jesus never had lights all around where he was born, their was no Christmas tree, no pretty packages under the tree and he goes on and on. I normally put up decor right after Thanksgiving, it is now almost a week and I have nothing up. What should I do? Go ahead with some or all or just forget it. But he does talk about my Christmas list. Someone else is doing shopping for him and has told him so. But there is no mention of our decor. He does mention every night about neighbors having lights up so early. I told him it's just 3 more week to Christmas.
I am writting because my heart goes out to every single caregiver. I lived with my mother for 15 years. she was my best friend till the end. she did not have Alzheimer but she was diagnosed with CLL (Leukemia) when she was just turning 71. Other wise a very healthy woman all her life. We still had a lot of fun and was able to make a couple trips to the beach but as time went on she was in and out of the hospital and out patient chemo. I tried to take good care of myself but found it very difficult. I lost my job at a hospital i worked at for 11 years due to thinking my back was hurt and huge companies don't care so they put me on a leave and let it run out. meanwhile I was home with my mother for 5 months and I wouldn't change a thing. However; I still can't find a job and that is horrible but I had that special few months with my mother. Please try the best you can to take care of your health as well as your loved one and tie a knot in the rope and hang on. I so understand the stress that comes with caregiving. God be with each of you. sincerely, sharon
Hi, mem, this is such a wonderful article. I love it!Savings Accounts
My 73 year old husband was diagnosed with Alzheimer's 4 years ago. I felt that I was prepared to care for him since he had been sick for many years and had had to take early retirement at age 50. I did my best for these four years but I got very tired emotionally and physically.Early in the disease we discussed what I should do in the future and he agreed and signed a paper saying that I was to put him in a Christian home near us.That time arrived this Fall. It was with a heavy heart that I spoke to the director of the home to say that I was ready.(We had put our names in several years before). In five weeks he was in the home and we began the very sad job of adjusting to our new life. At first he was very unhappy and didn't want to stay. Leaving him there was very painful! Now, 5 weeks later he is quite happy to be there . I spend a few hours with him almost every day and he is so happy to see me. He tells me he loves me and wants to kiss me a lot (even when we are out walking----like a couple of teenagers!) I am feeling much better and actually enjoy being with him now that it is not constant frustration. There was some feeling of guilt and it was hard to give the care giving over to others. I realize it will be different from what I would do but they are kind to him and tell me what a nice man he is. I miss him a lot but I think that we will have better quality time together this way. I know this was the right thing to do for both of us.
I have found it hard to face the reality of my husband's condition. The worst is I have always hated to cook and now he sits at the table waiting to have his meal put in front of him every night. He doesn't do well if we go out to eat, so, it's slowly coming to a halt. The only lifesaver is the dog. He will talk to him and the dog gives him the affection, I can't. He walks him often so it gets him out. Neighbors are aware and keep an eye on him. Adding to the problem is he refuses to wear his hearing aids and can't hear anything. my patience is limited
Hi Angela, I am glad that someone else is laughing too when your loved on talks ;many times I have no idea what my husbans says but I laugh because it makes him happy and he laughs too. However I am crying inside,silently because it gets more and more frequent. It is good to take time off for "ME" I did not and I lost a lot emotionally and physically..
I am having a severe problems now with spouses personality and anger.
I slowly came to the realization that if I don't take of myself (physically and emotionally) I will not be able to take care of my husband as his dementia progresses. He is not mobile and needs my help. I made the decision to spend the money we were saving for future niceties such as travel and use it to have a professional caregiver come in three days a week to give me respite time. My only problem is that he is not happy with this arrangement and he is beginning to object quite adamantly. There are times that it is very difficult for me to get out the door. The frustration is beyond tolerable and I need that "me" time.
I've been coping for 10 years with my husband's Alzheimer's and this past week as been the hardest time ever, because I have the flu! Oh to have fever, chills, hacking nonstop with itchy throat, no voice, weak, for a whole week, losing weight, no energy, and instead of someone taking care of you, you have this helpless, hungry person looking at you like you're their mom and you've forgotten them. I know it should wrench my heart but I really feel like slapping him!
Thanks for the inspiring thoughts and actions about taking care of yourself in order to be able to take care of your husband when learning of his diagnosis. I tried being the caregiver for my wife for about a year and it almost took me down, too. Fortunately she is physically healthy, mobile, etc. I now have caregivers and I can go to my office and visit with friends from time to time. I have been trying to get myself back into an exercise program at my 80 years of age, which I recognize I need very much. You have helped me along that road. I work to handle the grief and guilt but recognize it for what it is and get relief from knowing she is well cared for. I stay out of the routines of the caregivers for I would only be an obstacle to them and I know that I cannot take care of her.
I worry about my parents. I do not live close to them and my mother has been diagnosed with dementia. My father is not exercising or taking care of himself. Unless they move closer to us, we are dependent on him to take care of her. We need him to be in a good place physically, emotionally and spiritually for what lies ahead of us. Please let your children and friends help you if they offer. Caregivers deserve a break!
You have inspired me to follow your example. The only thing I've done is to journal. Lately, I've realized I need outside stimulation; I tend to withdraw into the small world my husband inhabits and I know that's not healthy! Thanks for shaking up my thinking. Mary
Correction. I have my husbands age as 73,this is a mistake. He is 78. Also when I said we laugh when he says a wrong words, this is because I feel, when he can laugh about it that's a good sign, also laughing keeps us from crying, and calms the frustration of this
new change in our lives.
I noticed that in todays comments only 2 were men.My wife was diagnosed a year ago with "Frontol Lobal Dementia" She exibits a variarty of behavior and is a challange for me to keep her "cool" or under control in public. Yes , I need some support but that requires me to leave home for a period of time . I feel that I am imposing on ladies who have said they would come over for a while. Another thing ,it is doubly difficult for a man to take care of his wife. It comes natural for women to nurture but even simple things like selecting clothes and jewerly is hard for a man to do much less doing make-up. How does a caregiver prevent or control a "breakdown" in public ? ? I feel like I am dealing with a 5-6 yr old
I would agree with Allan, that site Alzhiemerspouse is a great web page and I would urge all spouses to read it - lots of valuable information on it.
Congratulations! Keep it up! God's energy!
Sharing this story from Roseanne is very helpful. These pointers about how to maintain balance as a caregiver are very useful. In my case, I share the care giving of a parent with dementia with two siblings and some professional help. Despite the sadness and grief that goes with this, my siblings and I have become closer to each other than has been the case for years.
My husband is also in the beginning stage of what is thought to be vascular dementia, similar to Alzheimers.
He has had heart disease and diabetes for many years and his kidneys are failing. He is 89 and I am 79. I noticed he was getting things mixed up, losing weight, misplacing things, and doing things that were out of character for him. Then suddenly he could not believe that the condo we are living in is our home (we moved here almost 7 years ago) and he has become fixated on going 'home". I've had to come to grips with the reality that he has some dementia. I would like to keep him at home as long as possible but have no one else to depend on to help me. Considering his age and declining physical health, our family doctor suggested we consider hospice. It is wonderful for both of us. I recommend it highly. I also love this Mayo Clinic E-newsletter on the topic of Alzheimer's. Marilyn
My husband of age 73 was diagnosed about one year ago, but now I know he has had it for several years,
but it was just brought to my attention. I thought he was acting this way, of memory loss, because he had a heart bypass, and a small stroke, several years ago.
Hearing it was the worse part of Alzheimer's.
He was in denial, still is, but I was almost physically sick. I had to pull myself together, and start planing
both of our futures. His, so I would be sure he will have a place to go if and when the time comes,me,
what will I do if and when I'm left alone.
The hardest part for him was his having to give up driving his beloved car.
The car meant so much to him.He still blames his doctor
for this. We went through a really bad time when he refused his medications. A trip to the hospital by paramedics, proved to him how sick he was. I now know my options, and his, with the help of my computer, I found all kinds of help.
We both can use the Senior Citizen buses. Home delivery of food from grocery stores, medication delivered. By getting rid of the car we do not have the expense, and up keep of a car.
I still feel like I am on a roller coster with his moods.
But I have to remember how confused he feels. It's worse for him than it is for me.
It's when he is childlike, it hurts my heart.
When he forgets words we both have learned to laugh.
This is life, we have to deal with it.
My spouse was demanding and quick tempered at first. The long path has led us to where I do take care of myself and at the same time treat my spouse as someone special. Faith and yoga are my strength.
I appreciate that one must take care of themselves in order to be a beneficial caregiver but don't how one finds the time . My husband is 60 & diagnosed 2 years ago. He is quickly declining & resents time I spend sewing or anything else that doesn't include him . This is a long & difficult journey only made bearable by love.
we are just starting on this path. My husband is 82, fit and healthy. He is now on the cusp of 2nd stage of Dementia, most likely Alzheimers. I am feeling also that I need to get myself prepared. Feel discouraged, sad and wonder how our lives will proceed. He is quite in denial about all this and wont do anything to help the matter by using his brain, reading etc. So I find your comments very helpful. Thanks and good luck to you all!
It has been said many times that in order to give of oneself, one MUST take of "self" first. I have "cared for" a mom with vascular dementia for five years now (currently in stage 5 of the disease) the final two stages will be even more difficult. I cannot imagine keeping my own sanity without gentle yoga and meditation twice a week. It has been my savior. It gives me a "calm and presence" to work within a most difficult situation. My thoughts, prayers and love go out to anyone who is a caretaker.
My husband passed away on 11/1/2010 from Lewy Bodies disease, another form of dementia. Jim accepted this "death sentence" better than I did, but as the role of his caregiver, right to the end where he died in our house, he was always up and positive. It was me for a while that was in denial. However, over the course of 2 years, I saw him lose his ability to put on his own underwear or pants....he didn't understand that you put your leg in each opening. I could go on and on the basic things that he forgot, but I am blessed to say he didn't forget our friends, both short-term and long term. One hour before he died, even though he couldn't speak any longer, I squeezed his hand and told him I loved him and he squeezed me back. They say that even though they may not see or talk, they are very aware of voices around them and touch. I miss my wonderful husband; we had 15 years together last month (October), and my life is changed forever. He was my entire world.
Well said, Roseanne. My wife was also officially diagnosed at the age of 63 (although I had been seeing the signs for at least 3 years). I do not think you reacted selfishly at all, and I know that all in my weekly and online support group would also agree. It is SO important for the caregiver to care for him/herself just as much as for his/her spouse. To all that you did (I did all that you did except for the therapist) I'd add just one more thing that all caregivers should do, asap, and that is to seek out a helpful support group. In my particular area, I sampled one group that meets monthly at night with the local branch of the Alzheimer's Association and found it wanting ... and there was no group for my wife to join. However, I lucked out by finding an outstanding group with the local branch of the Alzheimer's Foundation ... it meets weekly, during the afternoon, and is only for spouses of those with AD. My wife attends a group for those with AD at the same time in a different room. Caregivers should seek out whatever groups are available to them and join one as soon as possible. As one 'newbie' said to our group today, just hearing others talking about some of the very same things they are going through each day is so validating!
An excellent online support group for spouses can be found at www.thealzheimerspouse.com. This site is meant solely for spouses of those with AD and has lots of helpful information. Spouses should check it out!
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