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    Angela Lunde

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  • Alzheimer's blog

  • June 14, 2011

    Navigating the stages of Alzheimer's caregiving

    By Angela Lunde

63 comments posted

Alzheimer's Caregiving

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Last week Terry wrote, "These (caregiver's) comments are all over the place — insightful, heartbreaking and complex." Terry was referring to the wide variety of comments that come across this blog as we share our personal stories and reflect on one another's caregiving experience.

So, I'm pondering that perhaps there are stages or phases of caregiving — in much the same way we describe stages of Alzheimer's. In this regard, each of us reacts differently based on what phase in the caregiving journey we are in.

My thoughts are in no way scientific. I did, however, look to see if anyone else had written on the subject and found some similar themes and supporting ideas by Gail Sheehy in her book, "Passages in Caregiving: Turning Chaos into Confidence."

I doubt that these stages are linear — leaving one and moving on to the next. Instead, I believe caregivers experience some stages and not others, may linger in one stage for a while, can be in more than one stage (or phase) at a time, and may move in and out of the same phase several times.

First, I see a subtle and continuous dance between the phases of acceptance and denial. This makes sense because there's comfort in denial; it provides an escape — a way of coping. I don't think it's shameful to have feelings of denial; it's simply human nature. The thing is, when it comes to a disease such as Alzheimer's, we don't have the luxury to remain in denial for long. Reality slaps us in the face at some point. And eventually you recognize that acceptance doesn't mean liking or approving the situation, only seeing it as it is.

For some, there's an "Am I a caregiver?" phase. Maybe it's at the time of diagnosis, or when you begin to take on certain tasks that were previously the job of the affected one. Perhaps it's when someone else labels you a caregiver.

At some point, many caregivers speak of entering a phase or period referred to as "The new normal." I see this as a time when normal refers to living with uncertainty and unpredictably.

For sure, there's the phase of "Redefining (or reframing) our relationship to the person with Alzheimer's," as we discussed recently. This can be a tumultuous time when you're figuring out how to be in a new relationship with the affected one.

How about the "Where have all our friends gone?" phase. Many caregivers (Floyd from a previous blog) experience the all-too-common separation and sense of isolation from friends.

"I feel trapped, I am losing it, I can't do this anymore" phase. Need I say more?

Fortunately, for some there seems to be a "Smooth sailing" phase. This is essentially a time when new skills and new ways of communicating have been acquired. It can be a period when things seem to be running smoothly ... until "The crisis" phase — a shift from the status quo.

Possibly a bit later in the journey there's the "It's really happening" phase. These are times of extraordinary grief and loss — a time when the consequences of accepting the reality of the situation are felt fully.

For most, there's "The long good-bye" phase. Caregivers understand the ambiguous loss of Alzheimer's. Some wonder how long this will go on, sometimes wishing (often in silence) that it would end.

For each of you, I hope there's an ongoing phase of transformation. My teacher, spiritual mentor and friend, Lyn Prashant, writes, "Grief is the most available untapped, emotional resource for personal transformation. We don't just get over our grief. Instead, we change our relationship to it. When we lose something or someone, and that identification must change, we have the opportunity to rebuild ourselves."

Caregivers, no matter what your stage in this journey, be kind to yourselves and always believe that you're doing the best you can at this moment.

63 comments posted

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  • June 18, 2011 8:15 p.m.

    I agree that we go through stages, and then go through them again each time our loved one has a significant decrease in abilities, or needs to have a new level of care. We don't have control over what is happening to him/her, only over our response. It is a physical, psychological and spiritual experience.

    - Doug

  • June 18, 2011 2:07 p.m.

    No Name Given, I too care for a wife of 54 years diagnosed with Alz in 2004. I'm still able to get away for 4 hours of golf and a few beers once a week and 3 hours of poker once a month. Without these breaks I'm not sure I could cope with the day to day chores and caring she needs and the heartbreak of watching someone I adore disappear. When she need constant watching I will contract for a "companion" to stay with her while I'm gone. Where I live the cost of this support is $22/hr or $418/mo which is far cheaper than several days of respite care.

    - Ed

  • June 18, 2011 12:27 p.m.

    My husband has been diagnosed with Mild Cognitive Disorder. We are in the denial stage. He has been tested but will not be tested again. He still seems ok and maybe he will stay in this stage. We are in the wait and see phase with the doctor for 6 months. I like all your comments. People do get sick of hearing me talk about my problems. My husband likes it when I'm around all the time but I still go to lunch with friends. He sleeps alot. He and I will be 65 this year. I'm thinking about going to a caregiver group but haven't done it yet.

    - Leslie

  • June 17, 2011 9:30 p.m.

    I am a 24/7 caregiver in a situation where there is not much help or relief from someone who is able to step in and take over for me occasionally. We have three sons and two of them are in other states. One is here but about 35 minutes away and is very busy with his job and family. We are in a situation where we have retirement so would have to pay for any nursing home care ourselves without help from Medicaid. We can do that but would not have much left for me to live on so I'm trying to do everything myself. I'm very fortunate that my husband is not violent and still enjoys life as best he can. I still take him out to eat, he's messy but I help clean up if need be. He enjoys it. I still take him to visit relatives occasionally. He enjoys that too but does tire easily. Anyway, I do appreciate reading all these notes and helps from this website. Every encouragement is a blessing!

    - Sue

  • June 17, 2011 7:53 p.m.

    Thank you for the excellent article. I seem to be at the "entry level" stage - my husband has been diagnosed with mild cognitive impairment. It's a toss-up whether he will get worse, or stay the same, however the odds are not entirely in our favor. My care-giving right now is mainly in the area of decision making and financial management. This seems pretty easy when I read some of the other posts. I need to be realistic though, and learn as much as I can before I get to the "slap-in-the-face" stage when I may have to do much more. Thanks for developing this newsletter and blog.

    - Joanne

  • June 17, 2011 3:51 p.m.

    i ASK MY HUSBAND WHAT HE S FEELING AND HE WILL NOT ANSWER ME MOST OF THE TIME. hE DOESN'T WANT ME TO KNOW WHAT HE IS FEELING. i THINK HE IS DEPRESSED AND DOESN'T WANT TO WORRY ME MORE. i TELL HIM i WORRY MORE WHEN HE DOESN'T SHARE.

    - mAUREEN

  • June 17, 2011 3:47 p.m.

    When I first knew something was a miss I found myself dwelling on all the negatves in the relationship. Everything that I had let pass, ignore, or go on with. I was so angry. I know about AD. My mother had the disease. I am wondering if other people who are caregivers such as I have had similar experiences. Somedays, are pretty good. I keep saying to myself Look what you have left - not what you have lost.

    - Maureen

  • June 17, 2011 3:05 p.m.

    I also was a caregiver for my mother who recently passed away at age 92. She died peacefully in her bedroom at home, which was her last desire. However, pain and grief are still with me. Most of my siblings refused to lend a hand in caring for mom at an early stage stating all kinds of reasons. Yet upon her passing they wanted to know exactly how her finances were managed, even though her income was low. It hurts how they have taken and disposed of her things at home since the house will be sold.I cared of her for 10 years and I miss her terribly.

    - Mina

  • June 17, 2011 3:04 p.m.

    I also was a caregiver for my mother who recently passed away at age 92. She died peacefully in her bedroom at home, which was her last desire. However, pain and grief are still with me. Most of my siblings refused to lend a hand in caring for mom at an early stage stating all kinds of reasons. Yet upon her passing they wanted to know exactly how her finances were managed, even though her income was low. It hurts how they have taken and disposed of her things at home since the house will be sold.I cared of her for 10 years and I miss her terribly.

    - Mina

  • June 17, 2011 2:08 p.m.

    I am one of the lucky ones. My mother, for whom I have been caring for six years, is now non-verbal, but smily and affectionate. if anyone had said six years ago that I would be changing poopy panties I would have said they were nuts! But I have learned to adapt to almost any situation and find the joy in just being with my mother, who is far from the person she once was. And when my siblings say they want to decide what's next, I tell them that what is next is a nursing home when I've had enough. I won't view it as failure. I will view it as having given my Mom many quality years. Some of you sound so overwhelmed. I think you need someone to say to you that you gave your loved one love and quality care and you are entitled to decide you can no longer do it. I have an uncle with Alzheimers and he is not as progressed as my Mom, but more difficult. I have told his partner that when he has had enough, I will support his decision to put him in a nursing home. It is not failure as a caregiver!

    - Linda

  • June 17, 2011 10:47 a.m.

    A note about respite. I too was unable to call upon respite care for my grandmother in mid stage Alzheimers due to guilt about her unhappiness. After a trip to the hospital with my Gram after she fell, the social workers sat me down and said that I was on a collision course of disaster - with ME falling apart due to the high stress. They reminded me that if I fell apart I would be unable to take care of my both my young daughter 9yrs and grandmother. My grandmother was very angry for a few visits, but it took a few months of anger for her to get over it. Now she does not so begrudgingly go for a weekend away. I know those feelings of I can't make her go into respite because she will be miserable (or I can't afford it), but you can do it, and must do it to keep yourself strong so you can be the best caregiver you can be.

    - Kim

  • June 17, 2011 10:21 a.m.

    I think the most important 'stage' a caregiver needs to go through is the "make-your-decision-without-feeling-guilty stage. Whatever decisions caregivers make, as long as they are made in the best interests of the person being cared for AND the caregiver ... are, by definition, the correct decisions. There is absolutely no need to feel guilty about those decisions. Too many caregivers feel guilty about this or that when they shouldn't. There are rarely any totally right/wrong, black/white decisions. Most decisions are simply choices made in specific situations ... situations that are not the same for anyone else. The 'right' decision for one caregiver may be the 'wrong' decision for another. Alzheimer's is a horrible journey with much more gray than black and white. Caregivers already have enough daily stress. Make your decisons, move on, and don't let guilt make your life even more difficult!

    - Allan

  • June 17, 2011 6:15 a.m.

    Dear Millie & Judy who get no respite care.You must even though your patient does not want to you to leave them otherwise you will collapse physically or mentally. I felt the same but when I get "ratty " & start to lose patience I know it is time to send my husband for overnight care.God bless you both

    - ann

  • June 17, 2011 5:37 a.m.

    I would appreciate learning from others the feelings of their loved one with Alzheimers - are you able/have you discussed with them what is happening?

    - Helen

  • June 17, 2011 12:21 a.m.

    I am glad my sister-in-law sent me this article and I signed up for the newsletter. This is quite helpful and I know I am not alone with my feelings. I am at wits end being my 92 yr old Aunt with dementia caregiver. I sold everything I had and moved in with her so she wouldn't be put in a nursing home. Now in what ever stage she is in I feel like a prisoner in her control. I am 62 yrs old and unable to go or do anything unless she is with me. She doesn't want me here so getting someone to come and stay a few hours is out of the question. I am her only family and have often thought when she gets angry when will this end. But then tell myself this is not my Aunt it is the disease but the verbal abuse is often hard to let roll off my back or laugh about it. Thank you everyone for sharing your experience. I now know I am not alone.

    - Millie

  • June 16, 2011 9:03 p.m.

    Thank you Terry! I have to find humor everyday to get through this.My husband and I are in our third year of care giving for my 78 year old mother who is at the precipace of late stage AD. Some days when I'm so tired from work then have to deal with her or her hired day care gives and I want to pull my hair out we look over and she is putting a glove on her foot or wearing two different shoes both on the wrong feet we just start belly laughing and somehow it makes us feel better!! Hey is there a guidebook out there for caregiving for the caregivers, the mojority of my family ie my siblings could use some tips. Except for one sister the others have turned out to be total jerks. I just hope when there time comes there kids treat them just like they have there mother.

    - Melanie

  • June 16, 2011 8:14 p.m.

    This little analysis was very helpful. Actually, I benefit from reading most things I find on this site. I am sort of at the "where have my friends gone?" stage--in one respect. I have friends and do a lot with them, but they don't want to listen longer than 30 seconds to my recitals of Alzheimer caregiver problems. And I think they shouldn't have to. Getting my mind off the subject when I am with them is very healthy.

    - Joan

  • June 16, 2011 6:23 p.m.

    Thanksyou for your insightful blog. As a caregiver I really needed to hear that. My mom is in late stage Alzheimer's. Looking back at our (my dad & I) journey of caregiving I see that one thing remains constant and that is constant change, adjustment and adapting. It seems that each day brings another challenge that we have to be figuring out to deal with. With laughter, and above all the help from God, we continue to get through each day. Thanks for your web sight.

    - Sharlene

  • June 16, 2011 3:28 p.m.

    I must admit sometimes I make myself laugh, I am reading the post and I see a comment sign by Terry and I say I didn't write anything ....news flash to me someone else could have a spouse with Alz and the caregivers name is Terry. That is my Ha Ha moment today :)

    - Terry now Terry C

  • June 16, 2011 3:27 p.m.

    I am caring for my husband Edmond who is still in the early stages of Alzheimer's. I empathize with all the comments I read here and would offer just one additional source of help. We are blessed to live hear the local chapter of our Alzheimer's Association and both get much strength and comfort from attending their regular support groups--one for caregivers and the other for the person with the disease. The local Alzheimer's Association is also a central resource for finding local assistance with most of the issues this disease brings into play. Edmond and I both rely on the fellow travelers we've met in our groups and on the staff that always will lend an ear and a timely, helpful suggestion. Ann

    - Elizabeth

  • June 16, 2011 2:40 p.m.

    My Father was the primary caregiver for my Mother for 15 years. The last 4 years, she was totally bedridden. Our entire family learned what complete love is by watching my Father take care of his most precious love day in and day out with never once a complaint. Caregivers are the forgotten ones many times and yet they need caregivers themselves. I will never forget Hospice of St. Joseph County in South Bend Indiana for standing by my Father during his long goodbye to the love of his life.

    - Pam

  • June 16, 2011 2:40 p.m.

    its good and bad to read these posts. i am envious of those caretakers who use respite care. my husband is very defiant about that. we are both 66. i am trying to take care of so much. my husband wanders around the house at night often going on the porch leaving the door open. its difficult to get enough sleep. sometimes he uses trash containers instead of the toilet. i have since hidden them. he follows me around all day. at least that way i can see that he is not getting into trouble. when he first discovered at duke that this was happening, he asked me to help him die. i told him we would make it together. i am now fearful. my attitude has turned to resentment even though i know he cannot help himself. i pray for relief from the nightmare in which we find ourselves.

    - judy

  • June 16, 2011 2:35 p.m.

    my mother lives with me. Sometimes I want to just throw my hands up and quit. I had to put my life on hold, but I would not change a thing. She is my mother and I love her.

    - ruth reece

  • June 16, 2011 2:20 p.m.

    I am struggling but your comments have helped me immensly. Caregiving is so hard but love & faithis stronger. I will give to my wife until I have gone to eternal peace. God bless Mayo and its staff writers.

    - Nick

  • June 16, 2011 2:03 p.m.

    I am 56 and have been a caregiver for my 63 year old husband. He was diagnosed with dementia several years ago. He has been going to adult day care, 5 hours a day, 5 days a week. That has been a big help for me and he enjoys the activities. He is almost totally dependent on me for most everything. I try to keep positive as difficult as that is sometimes. My husband has lost the abiity to communicate however, he responds to emotions. he still has the ability to laugh, that alone can makes this journey worthwhile. There are definate phases of caretaking and I am grateful that I am able to keep my husband home and hope to do that for as long as possible.

    - Wendy

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