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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

blog index

  • November 29, 2011 8:24 p.m.

    My husband is 25 years older than I and has mild alz. according to the stages that I've read. I still work FT, he is retired and stays home alone. We use the sticky pad system to get him through the day. Ex: brush teeth, drink water, etc. He still manages to drive to the store and is able to accomplish small shopping list using the sticky pad and the help of the store staff. As scary as this sounds, he manages to function ok for now. But, I am so concerned because he repeats questions every 2-3 minutes and can't retain any information given to him. Doc said to let him do what is familiar so that he doesn't lose what function he has. Does anyone have any other suggestions to add to the sticky pad system that might make his day easier. We do keep in touch all day long by phone, so I am able to keep tabs on him. If he gets lost, he calls and I talk him home. Any suggestions would be welcome.

    - Karen

  • September 30, 2011 10:36 p.m.

    My mother is in nursing home (alzheimer unit) she was fine but is now very agitated and mad. She believes that she works there and her boss is mean with her. I don't know what to do. The nurses are so kind and good its not them. My mother is in a time frame years ago. How can I handle this???

    - Dee

  • August 23, 2011 6:53 a.m.

    I have been caring for my mother (she lives with me) for over 8 years. She is 75 and was diagnosed with early onset ALZ about 10 years ago. She is in severe, late stage ALZ (can't walk, talk, in diapers, can't feed/drink by herself)and during the progression to this stage, I have felt many emotions and learned many ways to make caregiving easier. I work FT (I am 48 and single) and I have a paid caregiver stay with her while I work. The best suggestions I can give is to put baby locks on the doors so the person can't wander out. Get a baby video monitor so that you see and hear them at night. I never slept for about 3 years when she was sundowning. The monitor made a HUGE difference. Put matress pads on your furniture and bed because early on they can get confused about where the bathroom is and think the recliner is the potty. Keep small stuffed animals for them to play with and keep them calm (my mother loved to hold and pet them). Tell them you love them often and always hold their hand and hug them. My mother has not been able to speak more than "yes" or "no" for years and one of the last phrases she could say was "love you, love you, love you". I carry that in my heart and it gives me strength to see this through to the end.

    - Danielle

  • August 13, 2011 7:23 p.m.

    I am 55 and am caregiving for my mom who has A.D. AND her husband of 7 years, who also has dementia. They have been living with my husband and me for the last 10 months. Both have multiple physical problems, and mom's husband is currently in a post-surgery rehab facility but due to return home at the end of this month. Mom appears to be at the late stages, but still knows us, is able to carry on a conversation, still eats, and can ambulate some with a walker. I am an only child, and though mom was diagnosed at the beginning of this year, her disease has progressed very fast. She went under anesthesia for surgery in March, and has declined rapidly (which I'm told is due to the anesthesia). I am experiencing anticipatory grief (so I'm told). Because my mom was the only unconditional love that I ever knew, I'm terrified at the prospect of losing her. I already feel so alone. I have no children and no close family other than my husband, and though he does his best to be supportive, I still feel so alone. Friends disappeared,which was so disappointing and shocking, but I did find that finding new friends who have been caregivers in the past made a huge difference for me. I have also hired a caregiver to help me here at home, and she has become my best friend. She cares for my mom AND me (LOL) when I'm an emotional wreck. I just wonder if anyone out there is experiencing as much difficulty as I am with the anticipatory grief? Any suggestions?

    - Donna H.

  • August 5, 2011 4:44 p.m.

    I once read that after a caterpillar spins a cocoon it liquified into a goo, and that goo then contains the DNA of the butterfly. That is how I felt when I transferred care of my mother to full time nursing care. I could no longer make her happy, and no amount of scurrying on my furry legs could make it better. who was I without her? goo. But now I am sensing that wings are forming. Capacity has become my new anthem. I am being transformed, into who I am post caregiver..who I am to her, and who I am to me.

    - Katy

  • July 28, 2011 12:20 p.m.

    I appreciate Sandy's comment. I, too, am caring for myhusband who is in the early stages of Alzheimer's Disease but in extremely poor physical consition due to 55 years of Type 1 diabetes. I work full time and have to hire help to be with him most of the time. Friends and family are out of town so it is a lonely, expensive existence. The support group available to me is not much help. Most caregivers seem to be caring for parents and not to be working full time as I am. I liked this article and found it helpful. It's a day to day struggle but so far God is giving me the strength and patience I need. Thanks for this blog.

    - Jo-Ann

  • July 9, 2011 6:04 p.m.

    I am caring, full-time. for my 84 year old mom who is in the middle to late stages of Alz. This month in the two year mark since i had to quit my f-t job and move in with her. We were lucky in the fact that 5 years ago right after my dad passed suddenly of a Heart Attack, our Atty. recommended that we set up a Power of Atty (both Medical and Durable) & it was early & she was clear enough, at that point, that she agreed. I am an only child so full responsibilty falls on me. Some events and a bunch emotions on both of our parts have gotten us to the point we are at today... She also has Dementia which makes the disease even more interesting. One thing through it all is that she denies that she has any problems. She doesn't know i am her daughter and threatens me almost daily that she is going to fire me if i don't do what she says. She hides every thing, so every day is a treasure hunt for us. Her dresser tops and walls of her bedroom are completely bare (most photos get hidden in the linen closset between the extra bedding), as she doesn't want the people who come through her ceiling at night to steal anything! i cry at night and just pray that the next day will be a good one! i have 14 and 18 yr old daughters who live here with me as well, so they can give me breaks to run errands, yard work & just so i can regroup. Everyone tells me that it is only going to get harder, but i think if i keep the focus on LOVE we will all get through every stage as they come.

    - Darla

  • July 7, 2011 7:13 p.m.

    I want to share my list of things to make life easier. 1. Secure your kitchen. We never knew what we would find or find missing and really got grossed out a couple of times so either get a gate(we had to add a wooden piece shaped like this TT connected to the bars of a purchased gate and secured it to the bars with electrical clamps because she was going over the top) or if you can't install a gate get child latches for cabinets and a lock for the fridge .Knowing my food supply is safe helps. 2.Keep all necessary clothing in a closet in another bedroom lock that bedroom door when you leave and leave the clothes they want to rip buttons off or zippers out or tags off in there room they will become the "play clothes" and has kept my mom occupied for hours. 3.Keep all tissue in a cabinet I would rather change a pull-up then find dirty tissue disposed of in the most unusual places. 4.If your loved one is resistant to wearing pull-ups put regular underwear over the top. 5.Keep baby wipes handy and clean up bottoms while still on the toilet just like you did for your kids. 6.Keep a protective cover on mattress and a disposable pad between sheet and mattress pad so you don't have to wash pad after an accident. 7. Install a hand held shower and use liquid soap or inexpensive shampoo for washing. It goes on and off easier for quick showers. Thanks so much for the tip about melatonin I'm going to try it this weekend.

    - Melanie

  • July 7, 2011 6:08 p.m.

    Barbara, you need to check with some of the local churches and the respite care they are offering for a very small charge and for all day. I found one that if you can,t afford there $50.00 for 8 hours lunch included charge they will sign you up for there assistance plan. My mom can afford it because she lives with my husband and myself and actually is learning to enjoy it especially when they bring the children in from the nursery to visit. Check your local churches and see what they offer.

    - Melanie

  • July 1, 2011 12:42 p.m.

    After reading the various blogs, I can totally relate to so much. My hushand has Alz. and he is only 65 years old. We are married 42 years and are both retired. This is not what retirement is supposed to be about. I have joined a support group and it has helped me tremendously. The feelings of isolation, depression, anger, frustration, anxiety, etc., etc., were just overwhelming. He is also now going to a day care center twice a week which really gives me a break. I get so sad and lonely with no one to talk with all day. He was never a talker but now there is no conversation. I just pray all the time that God will give me the strength to care for him. God bless all of you. Sandy

    - Sandy

  • June 30, 2011 9:04 p.m.

    I am having a challenge just to get my 87 year old mother in for an evaluation. She doesn't see, or perhaps not admit, that there are changes in her memory and in her ability to take care of herself physically. My sister and I wrote a letter to her physician, her set up an appointment for all of us to geo in, but my mother canceled the appointment, "because nothing is wrong". How does one get beyond this, especially before something harmful happens?

    - Clarra

  • June 29, 2011 10:09 p.m.

    I found this interesting, as we do also go through changes. In my late 30's I cared for my step-father who had ALZ and within 5 years he was gone. (I was working full time, trying to care for him and my mother). Now after 13 long years, my husband is in the middle of the 6th stage. But from what I read it could go another 6-7 years. Of course, by the time I realized he had it, he had lost everything ... if only ALZ sites would warn people to watch for this, I had no warning (the slow kind of ALZ moves SLOW and by the time you realize it, the person can destroy everything you've worked for). Perhaps by word of mouth, articles, people will become more aware, to watch you loved ones closer, it creeps on the person and then wraps it's ugly arms around them. Wishing the ones with ALZ, love... and the Caregivers peace.

    - AC

  • June 25, 2011 9:50 p.m.

    Oh, Barbara, I'm so glad you can share on this blog. It really helps. I'm not sure how your day begins, but if you are tired, anxious, angry and exhausted (all of the above) your husband can sense that! What has worked for me is to greet my husband with a big kiss and a happy cheerful voice in the morning. Some days it takes a little more effort but I believe (and many agree) that our personalities can set the tone for the day. When my husband asks questions that don't make sense, I try to answer him with "oh, that's already taken care of and you don't have to worry about it". It gives him peace (me too). You need to step out of your real world and step into his, It takes a little practice but it actually can be an escape for you and puts you more in control. I agree about calling the ALZ emergency number. There is help....you just need to find it. Extra prayers are coming your way....

    - Pat

  • June 25, 2011 4:15 p.m.

    I ache for Barbara also. If it wasn't for a small dose of Haliperidol daily, and 50mg. of Sertraline that I give to my husband, plus a small dose of Busparone for myself for general anxiety, I'd be feeling the same way as Barbara. I, too, feel grabbing someone to just stop by and listen and talk to my husband - but everyone is too busy, even our children who try to avoid the change in "Daddy". I pray a lot and realize how much I have changed - After months of misery for both of us, I am the one who has changed and for the better! I do not argue, explain, or repeat my answers anymore! I have learned not to take anything personally. This is a wonderful chat room for us who are transitioning to caregivers. If we try so hard to bring back the past, we'll go crazy. This is the new normal now and we can and we must - adjust. Reach out for positive feedback, and pray for wisdom and patience. God bless you, Barbara.

    - Ginny

  • June 25, 2011 8:57 a.m.

    Barbara your story is heartbreaking, you need some help and your going to have to be resourceful and get some much needed and required to survive help. Call Alz hotline and talk with someone....find support group...within that group maybe some much need outlet for your well being plus who know who know who that could offer some help. No family or friends (common for us all) time for new ones....via a support group. Make sure your getting sleep and eating well, also check out any senior center in your area. If your husband wants to argue let him argue without you don't argue back you can't or wont ever win, isn't going to happen. Did your husband have anything that he enjoyed, movies music etc. if so find them to watch or listen sorry this is rush but my heart breaks for you and I can here my husband stirring got to run

    - No name given

  • June 24, 2011 11:01 p.m.

    my husband has alzheimers.he can still do some things but mostly does not understand even if i explain in detail.i have noone to help me,if i do not agree on everything he says or do things the way he wants he gets nasty.he is with me 24 hours a day and is always asking questions or complaining all day.i hate to say it but i am glad when he goes to bed.i am trying my best to help him but i find myself getting angry and losing patience.i pray every night for GOD to grant me them.i am 77 and recently had a modified radical mastectomy with 8 lymph nodes taken out ad am not supposed to do a lot of things but i have no choice therefore i am having a hard recovery time,we don't have the money to pay someone to come and help out and nowhere to take hime for a few hours.we have 1 place it costs $60.00 a day and they do not take anyone with alzheimers.i want to attend an alzheimers group but am so exhausted i don't have the energy to go.he has no friends anymore..sometimes when i see an older man i feel like running after him and asking him to come in and be a friend to him.it is an awful thing this alzheimers.we will be married 53 years this year.i sometimes look at an old picture of him and say to it "where did you go?"i have so much anger in me now and i hate feeling that way as he was always a gentle,caring person,he still likes to make people laugh(i wish i could)any advice would really be appreciated.thanks

    - barbara

  • June 23, 2011 8:08 a.m.

    I mentioned in an earlier post that if I live to see the otherside of this disease I will work for changes in aid to families for respite and day care. If we as a nation understand a tax deduction for working parents and day care where are we any different. Anyway I received this email from The Alzheimers Organization about the National Alz Project Act. Many of you may already have received it. I did respond and hope many of you will as well with your concerns and needs. http://napa.alz.org/ We are a forgotten group to our nation.....let them hear your voice

    - Terry C

  • June 22, 2011 12:36 p.m.

    Circumstances and situations make or break us as individuals. Reading beautiful post like NancyAnn and heartbreaking ones like Millie reminds me in this journey that changes daily you just never know.....this disease is hopeless, terrifing and unfair to our loved ones and ourselves. Time and passages, roads traveled that are bumpy and full of pot holes. I read an article that help it said (paraphrase) Learn to speak Alzheimer to your loved one, don't try to bring them into your world .....their brains won't let them come. Trying to make them reason in our world just doesn't work anymore, relate and communicate in their world. And the hand held timer....brilliant. No more fights on you've been gone to long..... :) And smiles and humor will always help.

    - Terry C

  • June 22, 2011 11:48 a.m.

    I so wish that I had this newsletter while I was caring for my mother the last 3 years. It would have helped me realize that decisions need to be made and sometimes, they need to be made by one's self. You see, I, too, have siblings who for one reason or another weren't around. Although I gave them significant and numerous signs in emails, etc. all they could talk abut was themselves. No one cared for our Mother. I feel so thankful that she called on me to help her when she needed care. In the end when she was taken from me not by choice, she thanked me and said she owed me. I never felt that way at all. I owed her for giving birth to me and for giving me the only kind of love she could. By her example, good and sometimes bad, I learned how to be a better mother to my own children and see the results now in my two caring, selfless, successful young adults. I see in these blogs that we all learn life's lessons. Although Mother passed away, I still read the newsletters and the blogs. They are a reminder of the days mom and I had together. Thank you, Mom. I'll see you soon!

    - NancyAnn

  • June 21, 2011 12:53 p.m.

    I'm sitting here with tears in my eyes because my dear mother has the "memory loss". That's how my dad refers to it. He has become a hero in our family because he has learned to do the laundry, the grocery shopping, the planning of meals,everything my mom used to do. This is the man who used to buy new underwear when my mom was in Hawaii with a friend because he didn't know how to use the washing machine. He keeps saying "The Golden Years aren't cracked up to what they're supposed to be", and I'm so happy they did so much traveling in their 50s and 60s. I know it's morally wrong, but I pray that she will get pheumonia so she's doesn't have to go to an alzheimers unit. I want my mom to be the way she used to be: happy, so loving, doing for everybody, taking care of herself. But it's not to be. I think I've come to acceptance, but then I realize I really haven't. Thank you for this space to say my deepest feelings.

    - daughter

  • June 21, 2011 9:36 a.m.

    I am caring for my husband--both of us are 69. Although I have this job by myself, I am able to laugh about things most of the time. It is very wearing though, not just physically, but on the soul. He has had symptoms since the late nineties and was diagnosed in 2005. One group of physicins in another state called it vascular dementia due to white spots deep in his brain. Another group of physicians in VA, where we live now, call it Alzheimers. Who cares what it is called? It is dementia, plain and not simple. My husband is very O/C wanting to take the trash out piece by piece, feeling that he should shave more than once a day, wanting everything put away and perfect, etc, etc. He is also restless, up and down all the time. But the amazing thing is that he has taken up reading--simple books, mostly religious.

    - Della

  • June 20, 2011 3:57 p.m.

    I'm a paid caregiver. For $10 an hr. I anwer the same question 100 times.,change diapers,,make 3 interesting meals a day. Try to find something on Tv that is funny or get catches there eye( I have a couple, both AZ), I break up fights do laundry,remind them who I am,put food in my mouth at lunch time to remind them how to chew., follow them around,because they have never seen there own bedroom before,I repeat and repeat and explain...Funny you really get attached to these people.

    - rita

  • June 20, 2011 1:28 p.m.

    to anyone that has been diagnosed with Alzheimer's please look into lyme disease. 200,000 people go undiagnosed every year and it can mimic many diseases alhheimers, ALS, MS, bells palsy and many more. My Aunt was mis-diagnosed for so long now there is no chance for her. the labs that insurance companies use are only 40% accurate at best. i should now i was diagnosed with MS and it wasnt. Itwas Lyme. And i do have plenty cognitive problems too. It went undiagnosed for six years. Now it is incurable. But there is treament to help with symptoms.

    - julez

  • June 19, 2011 8:05 a.m.

    Pat your amazing :) Doug, Melanie, Sue parts of your stories are mine. Everyone travels through passages in their lives. .....Angela has been kind enough to give us our road map. Some of these stories show amazing awareness and such over mounting difficulties. I to believe in respite care at all costs. I have to work full time, I bring someone in 2-3 hours a day while I work. I pay him more than I make an hour but I have no choice. If I survive this disease to the other side I am going to work on getting tax relief for home day care for this disease.

    - Terry C

  • June 18, 2011 10:07 p.m.

    Ms. Lunde is "right on the money" with her insightful comments. At this junction of my husband's dementia, he is 95% bladder incontinent and is also totally blind as of a year and 1/2 ago. Every day presents its own set of challenges and I have solved them satisfactorily and now I want to share them with you. The first is that I give John 6mg of extended release melatonin (which is a natural sleep aid). I give it to him with his "night" pills at dinner time. He has and continues to sleep from 6pm until 9am the following morning. AMEN! I prefer natural supplements in lieu of prescription meds. Also, because he needs assistance in everything he does, it was becoming more difficult to get him to sit in the dining room chair and push him into the table. I had a small rug under the table but them he was starting to get his feet caught. I bought a plastic floor mat at Staples which is used under desks and my daughter found online an "executive desk chair" with wheels which is incredibly comfortable for him (he looks like the former bank executive that he was). If needed, I can wheel him into the bedroom in the chair. Also the 3rd thing to mention is that at night I use the large pad (that folds like a giant diaper) and I place a "Poise" liner inside it. When I check him during the night, I remove the soaking wet pad and replace it. I use the liners during the day in his pullups and it saves having to inconvenience him to completely

    - Pat

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