Oct 192012

Choice is a luxury and usually a gift.  As a caregiver to a loved one, the absence of choice is a difficult concept to grasp when you are accustomed to the illusion of choice and control in your life. It is earth- shaking to have circumstance thrust upon you, pushing you towards decisions that may go against your grain. – Tania Richard

My mother was diagnosed with dementia in the summer of 2011.  At the time, my youngest kids were three and one. My blended family includes my husband, four kids and a large sheepdog living in a three bedroom townhouse. There was no room for my Mother to live with us comfortably, and no funds to pay for a 24-hour caregiver, which she needed because she could not be left alone.

My parents didn’t plan for their retirement. Their choice determined that I had few options when it came to choosing where my mother would live. The nursing home with a dementia unit I chose would have to be one covered by Medicaid.

She would be fed, clothed and housed with no adornment or extra amenities. My Mother, a private woman, would share a room with two other people.

I could choose to wreck myself over the fact that my Mother was living there, or I could choose to accept it and focus on the fact that she was safe and physically sound.

I had to remind myself that my Mother had not been living a quality life for the past year as her home fell into disrepair and her hygiene declined. The nursing home would be an improvement. I would have to tell myself that every time I visited her.

She was happy in her new environment and made new friends. My Mother before her diagnosis would never have been happy in the nursing home. My Mother with dementia was quite content.

Finally, I felt as if I could make a choice that would empower me and the Serenity Prayer was a guiding force:

            God, grant me the serenity to accept the things I cannot change,
           Courage to change the things I can,
And wisdom to know the difference.

 These are wise words for caregivers to live by as they navigate the world for the person in their charge.

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About the Blog Author Tania Richard
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

  72 Responses to “Choosing to Accept the Changes Dementia Brings”

  1. Being a primary caregiver to my mom forced me to change many of my expectations about life, healing, and family. Dementia taught me to be a more patient and accepting person; financial realities of care taught me to look hard at public policy and question how our society will weather the dementia epidemic. I think we’re a lot like New Orleans, just before Katrina.

  2. Tania, I truly understand what you've been through. I went through the same emotions when I have to put my Dad into a nursing home 3 months ago. I reminded myself repeatedly that he is in good hands, and that he has all the attention that I could not give him. Since his diagnosis with Alzheimer's Disease more than 2 years ago, I have learned to be more patient and learning more about the disease and what other caregivers are going through is so helpful.

  3. My mother was diagnosed this year. They think she is at stage 4. My parents are still living in their home, but for awhile now it has been too much for my dad who has his own health problems. My mother doesn't see that it's too much for him. My dad is thinking of putting her in a nursing home, but she doesn't know. She will fight us on this I know. I know this is probably the right thing to do, but why does it feel like we are taking more of my mom's independence away from her? She hasn't been able to drive for over 12 years and my dad is her primary caregiver. Thank you for your words. That is probably what I needed to hear.

  4. Thank you for this post! We are facing making choices about my mother's next place to live right now as she continues to decline. Your words are a comfort & a reminder to look for the positive.

  5. My sister and I are taking care of my mother who was diagnosed with early onset Alzheimer’s Disease at the age of 53 in late 2005. Medicare and Medicaid help some, but the other things you don’t think of that aren’t covered by either can cost quite a bit. It has been an adventure raking care of her. We never know what’s going to happen from day to day. During the day while I am at work, she goes to adult daycare, a Godsend. Because I work shiftwork, she spends her nights with my sister. I know that there will come a time when she will have to be placed in a nursing home, but I don’t think its time yet. Then again, I don’t think I’m ready yet. Being a caregiver is a strenuous and sometimes its painful to watch her lose herself as this disease progresses. May God bless all of you who have been and are currently caregivers to loved ones!

  6. I understand completely, choice being a luxury. My Mother had this horrid disease, passing away this May. We have cared for both parents for the past four years. It is a burden nom matter how much you love love them. Everyone looses. We were able to keep Mother at home until her death and continue to care for our Dad in his home. I would not wish this on anyone.

  7. You are incredibly brave to realize what is important. My mother has been an ALZ victim for over 10 years. She also moved into a memory cre facility in 2011. It was the best decision for everyone. She is always happy, engaged and safe. We are all less worried and able to focus on the great times we enjoy her company. I have had to make hard choices regarding my mother during this journey, but I know that she would always be proud that I was brave enough to put my children’s lives first.

  8. I am living with the reality of Alzheimer's, as my dear mother has it. Just a few months ago
    she was walking, and now she is in a wheel chair,…is almost non-responsive and does not
    know me anymore. It is such a shame they are robbed of their golden years, and it is not
    called the long goodbye for nothing. My heart goes out to you and others, and yes " God grant us the serenity
    to accept the things we cannot change, the courage to change the things we can, and the wisdom to
    know the difference " Please don't let this disease be so hard on you, as your loved one that has it
    would not want you to. Please try to stay strong, and try to remember the good times you and your loved one once

  9. I am living with the reality of Alzheimer's, as my dear mother has it. Just a few months ago

  10. My experience is very similar to Tania's. My mother is happy in her environment and I have peace of mind knowing she is safe and has 24 hour care. It was agonizing and placing her somewhere was not something I wanted to do. But it turned out to be the best decision for my mother that I could ever make.

  11. My prayers, thaughts, and hope goes out to all the people who continue to care for our loved ones. I personally have not accepted the fact that my Mother is in an assited living facility. All I can say is that my Mom is taken care of, happy, and around new friends that she met. Her smile keeps me going. I pray everyday that God can help me accept and to focus on whatever positives there is. Love you Mom! 🙂

  12. Thanks for the blog, Tania and for others' comments as well. I had to place my husband in a memory care facility a year and a half ago because my health was suffering greatly trying to work full time as our only source of income and not sleeping at night while he prowled around cooking and drinking. I also have to tell myself every visit that although he is not happy being there and refuses to take part in any activities, at least my health is better and I am able to continue working to pay for taking care of him. One of the hardest aspects has been all the criticism directed my way from people who have not lived it and do not understand, including his own adult children. I have learned I will never put any guilt on my children and have told them repeatedly, they can put me wherever they need to, that it won't really matter to me in spite of what I may say then.

  13. I moved in with mom 4 years ago because she can no longer live alone. I also work full-time. I didn't know if I would be there for weeks or months and just look – I am still there. Life is very difficult. I keep thinking she will progress to the point one day where she won't realize we put her in a nursing home, but I don't know. Til them, we just take it day by day at home. I call her frequently and run home on lunch hours. Don't want to complain, but there is no more "ME" time. I try to tell myself to enjoy whatever time I have left with her, but it is hard.

  14. I am in a similar situation but my mother has been in a nursing home alzheimer's unit for a year and still asks me to take her home every time I visit her. She does not like it at all and stays to herself. She is happy to see me when I arrive but within 10 minutes it turns unpleasant because she starts telling me how she wants to go home. There is no reasoning with her because in her mind she thinks she can take care of herself. She is unable to keep her home clean and her personal hygiene was not good. She is 87 and has fallen twice resulting in a broken hip and a broken neck and 2 surgeries. I'm her only daughter and I live 3 hours away. I don't want to move her closer to me because her brothers and sisters live close to her and can visit her often. I've gotten to the point that I don't want to visit too often because I feel like I make her unhappy and I wonder if it would be better if she forgot who I was. The guilt is so hard to bear.

  15. The care of my mother with dementia has been the biggest challenge I have had to endure. I have lived 5 hours away from
    my mother for 30 years. I knew that some day I would have to put everything on hold and take care of her. My dad died at 61 and left my mother with a few investments but not near enough to pay the rising cost of long term health care. It is so sad to
    see these seniors that have worked so hard there whole life to end up depending on one of their children to take care of them.

    I moved my mother closer to me…8 minutes away instead of 5 hours. It was a big adjustment for her…having to leave her friends. She was in assisted living for 6 months but that took out all her savings. I loved having her here closer to me. We spend a lot of time together, laughing, baking and shopping. I have learned a great deal of patients taking care of her.
    After her stroke in June, I have taken care of her 24/7. I never thought that this care giving would be so hard…especially when she doesn't know what is going on around her. my situation is much like Dana's, doing fine one day and bed
    bound the next.

    I thank God for giving me the strength to take care of my mother. And, many thanks to all the post…It is a relief to know that
    I can find inspiration in all the comments.
    Blessings to All!

  16. Thank you for your words of wisdom, Tania. My mother too has Alz. and is entering the final stage. Such a devastating disease for all involved!
    Deneise, in response to your post, there was a high profile politician w/Alzheimer's…Ronald Regan suffered from it for years and years. Tho my guess is that he wasn't on medicare! Maria Shriver's dad had Alz. and she wrote a lovely book to help children understand Alz. She's also a strong advocate. I like to see that the Alz. Assn. is using 'famous people' more and more as spokespeople for this disease.
    My family and I just attended the Walk to End Alzheimer's in D.C. this past weekend. That is one way in which I feel that I can help in some small way, find a cure for Alz. That is my hope and dream so that me, my siblings or my children, won't have to suffer this wretched disease. More folks need to do the Walk, raise funds, contact their local politicians and demand that more dollars be allocated to Alz. research.
    You are right; until one has been directly affected by Alz. one cannot even fathom how devastating it is, and how important it is to find a cure soon.

  17. I was in research for dementia and diagnosed my sweet, loving husband and father of 5 with dementia when he was 50. He is still "alive" 20 years later- but in a nursing home for the past 8 years without knowledge of anyone or anything. His care has taken all my savings, takes his social security and pension and has left me with the loss of my home- I'm now in a rental. I'm 68. For those of you who see the decline quickly- count your blessings. 20 years of care is a lifetime!
    My children either live too far or "can't bear to see their father this way" so they are not involved. That is an additional pain!
    This disease is a disease of the loved ones more than the victim.

  18. My Mom, 94 has had vascular dementia for a number of years but we coped until in March when she fell getting back in bed and broke her hip. After surgery, her dementia skyrocketed to the point that she forgot how to swallow. After surgery she went to rehab but did not do well. I moved her into a Memory Center across from where we lived, it was small, only 17 resident and PT on site. Unfortunately, there was only 2 staff members for 17 needy seniors. My Mom was getting minimal care and I had to bring in my own aids. After 5 months, I choose to bring her back to her own home with aids from 7:00a.m. to 10:00p.m. and I sleep in the extra bedroom. The upside has been that she is more engaging and eating much better. She is wheel chair bound but we get her on & off the toilet and in & out of bed. Not easy, a toll on our backs but good to see her smile. On the other side, she still has anxiety issues and kicks, hits & bites. This does not make for good relations but bless my caregivers they love her too. This has been the hardest journey yet and I pray that my Mom can stay at home til the end. .

  19. Thank you for your story. It provided new insights for me regarding when I made the choice to have my mother live in a nursing home. It was just a difficult and heart-wrenching decision. I could no longer keep her safe in my home. She was safe in the nursing home and although I was filled with guilt in the beginning, overtime I began to realize that I did the best I could, at the time, with the tools I had (at that time).

  20. Tania
    Thanks for your words and a reminder ofthe serenity prayer. I put my wife of 52 years in a nursingnhome 7 months ago and I am still anguishing over her being there. Yet like your mom she at most times is content and happy there. She had suffered from a severe stroke 20 yrs ago. And when dementia started a year ago it just got too much caring for her at home.
    Tom S

  21. Your words are so true and I now can see why it is so hard to get ANY help for me and my husband. He has early ALZ and on Aricept. He is obese and cant walk or move with out a lift ( that I cannot use alone) Only those of us who are caregivers for our loved one can feel the pain and heartache we have to endure with this illness.It is so sad to see such a pridefull man lose himself as this disease progresses. Seems like his friends are afraid of him or think it is contagious , so they dont visit him anymore. I even think his doctor is only keeping him on drugs to keep him comfortable until the end. The words about Medicare/Medical answers for me, why I cant get help, " they are hemorrhaging money on this illness alone" . If you dont have any money your ok, but if you have some money, insurance thats a different story. Yes the out of pocket expenses for his medications and supplies is overwhelming. I thank God for a special gift each month from a special person in our life. I truly thank each of these comments for your input and I pray all will be well for you and yours This IS the biggest challenge we will ever have to endure. God is with us and he is ever present help in time of trouble Amen

  22. I have read each of your posts and I can only tell you all that even after the flame goes out and you are no longer a caregiver nothing fills that empty hole in your heart. I was a care giver to both of my parents with Alzheimers. Both had to be placed in care facilities. There are questions with no answers and memories with no endings. I pray for each and everyone of you no matter the involvement. This ilness robs us all and then leaves us questioning. I would walk the walk again and yet I wish I could have refused. It is very complex.

  23. A lot of people talk about how no one understands because they haven't been there, but I HAVE been (and still am) there. My mom AND her husband were diagnosed in 2010, and I moved them both in with my husband and me. I made as many modifications and I could at home. Sometimes a main floor study or a master on main has to be turned into your loved one's bedroom. You just DO it. We all had adjustments and concessions to make. If you work, there are agencies that will assist with providing respite care for you. Recruit friends to fill in for you. Allow your church to help you. There are professional caregivers clamoring for jobs. I've done all of the aforementioned. Mom's husband passed away last year, but before he died, he'd had to spend 90 days in a rehab facility/nursing home. I vowed that my mom would never have to stay in a place like that. I don't care how nice they seem to be when you walk in the front door, spend about 12 hours in one and pay close attention. They are understaffed, and many of the lower echelon staff are there because it's a job, not because they are committed to keeping the residents comfortable and healthy.

  24. But you do what you have to do. My mom raised me and cared for me, and I am committed to doing the same for her. And once she's gone, I know that I will have no regrets about the life that I was able to give her in her final years.

  25. My Mother also has Alz. My family has been taking care of her at home for the past 4 years. It is quite devastating to see your Mother not even know your name anymore. We collaboratively (Mom included) have decided that Mom would have a much better life around people her own age. To be able to see and interact with more people on a daily basis. So it is to be, in a few short weeks, that she will begin living in a nursing home. I learned to live by the Serenity Prayer many years ago. It hangs in my living room and I read it every day.You see, I have also been a caregiver for the past 35 years of my life to my totally disabled daughter.

  26. I was blessed with the fact that my Mother had money she had saved and we were able to place her in a nice assisted living faclility close to my work. I had tried to get mother to think about what she wanted to do when she could not live alone. She would not face this. She was found wondering around in a parking lot and I had no choice but do something. After a hospital stay my brother and I had to make the decsion to place her in a safe place. I could have quit work as a nurse and stay at home with her. I realized that would have been miserable for both of us. She would argue with me because she did not realize her deficent. Now I can visit her and we can have a plesent time together. The place she lives has activities that she can handle, she is safe and cared for.As you said we have to focus on the good part. We have to realize that the alternative would be worse.

  27. I sympathize wtih the writer of this article. Indeed, when I calculated the expense potential of having help caring for my husband with his dementia, I knew that we could not afford it. It actually would cost More than having him in a nursing home! Home health aides did not want to care for him even part time — and that was a potential lesser cost than nursing care —- they said that he would require more care than they would be authorized to provide. It was a blessing that my husband passed 30 days after being placed in care, first in the hospital, second in a nursing home. With all the hazards for someone with dementia living in a house that really isn't generally designed for people with any difficulties such as coordination or handling the activities of daily living, life in a facility designed to handle care requirements is essential — and especially a place that accepts Medicaid!

  28. Thanks to all of you which has been so helpful to me. My mom has been diagnosed with early stage of dementia. Since my father's death her health has been declining. I am a long distance care giver and it has not been easy. She lives 5 hours away. I know that I have to make a decision very soon either to move her here with me and my husband, daughter and her two children. When I am there with her for an extended period 4-6 wks my nerves are shot and it takes me a while to recover. To place her in a facility would be difficult because that is just something we don't do. It is just me and my brother and I am the oldest and retired. Family members put you on a guilt trip but challenges with my health will cause me no other choice but finance is also a problem. I truly understand what caregivers go through.

  29. My very brilliant and darling Mother (83) had a surgery over 1 year ago. Following the surgery I noticed, at first, very subtle changes in her personality but the speed of her mental decline is shattering. I've just taken a leave of absence from my Job to care for my Mother as my Father 87 is not coping. I feel so totally lost and panicked right now. Every time I get into my car I cry as I'm trying to keep a positive front up around them. Can anyone help me with how to have an honest and consoling conversation with Mum that won't add to her awful anxiety because she has said to me privately that she knows. This is the first time I have ever been so lost for words with this amazing woman who has always enabled and encouraged every aspect of my life, career and family. I can't bare to think of her being afraid and must try to help her.

  30. Seems most comments are about mothers. My husband was diagnosed with alzheimer at 65. He was in a daycare for alzheimer patients for a year and a half. However, a month ago I was told they could no longer let him go because he got so bad. I have him home and can't begin to tell you all the problems I am faced with: losing everything, breaking things, eating anything he can put his hands on, not knowing anyone including family, etc, etc, etc. I will start using sitters one day a week for now to see how that works, but don't know what the future holds. I take one ay at a time and pray the Lord will be with me and guide me. God bless all who are going through difficult times in dealing with this horrible illness.

  31. Thank you! My mother will be moving into a nursing home soon – just waiting for the next available bed – and I am feeling consumed by guilt, angst, etc. You're right, this is a 'choiceless choice'. But I can choose my response to it.

  32. Thankfully, I am not at this point. However, I have had to change the way I think and feel about the changes that are taking place with my mother. It is hard to accept that this person you are caring for is not the mother you grew up with or enjoyed talking to and traveling with as an adult. Now, I see glimpses of my mother but for the most part she is not there. She is still functional and active, but she is just not the same person. It is hard to explain to people that aren't going through this. But I have a hard time with the fact that this woman who taught me how to cook, cannot be trusted to cook because she will forget that something is on the stove and burn up the food and the pan. Thank you for this post, it does help to know I'm not alone.

  33. is there anyone out there who had to put their husband with Al’s the in a nursing home I’ve only been reading about mothers ….. especially the financial aspects on a wife.

  34. My husband has Dementia and this has been devastating to our 4 children and myself. He was always such a “Go-getter” doing things in such a fast manner that we often told him to SLOW DOWN. Then 6 yrs ago, he got very feisty and tried to kill me as I was getting ready for work. We had no idea what was wrong. The ER doctor told me right away what he had and that I had a hard road ahead of me. And believe me it has been just that. We all have to be so careful in what we say or do around him. I retired early to take care of him so that naturally has put a damper on our income. He always received cash for his work jobs so his SS check is not adequate to cover his medical expenses. His dementia medicine is outrageous. But if I have to starve he will have it or be locked up. I know he will be in a home soon. If it wasn’t for my Heavenly Father, I would be in a terrible shape but by His grace I will survive. I pray for all the people effected by this terrible disease that a cure is found to detect it early in the onset.

  35. Very enlighting and thoughtful words. I am an Alzheimer patient and looking at the future with some concerns. Tania's words were useful and actually comforting for me. I am a disabled combat veteran, former University Professor and State Official, now on an entirely different life path that I would have ever imagined. My creator has plans for me that I could have never anticipated. Thank you Alzheimers Association for keeping me informed and in-touch with current research.

    Dr. James P. Hawke, Ph.D.

  36. I hope that as caregivers we understand the necessity of making provisions for ourselves while we still can and not have our children or future caregivers in the same bind that many of us presently face. I took out an insurance policy that will be used for my care if I am unable to care for myself in any way. I was forced to put my mother in a nursing home and it is a heart-wrenching experience. I still visit her every day. I do not have children, and even if I did, I wouldn't want them to have to worry about how they were going to care for me. Please check into getting something in place for yourself. This way, you know you can go to a facility that you choose.

  37. My mother was diagnosed with dementia five years ago. For the first two years, I worked four 10 hour days and spent three days with her at her home. Then I left my job three years ago to care for her full time. These years have been incredibly hard. Watching a loved one fall into the darkness of dementia is a horrible experience. One day I know I will have to place her in an assisted living facility with memory care. It tears me apart to think about it. For now she is content at home and I send her to an adult day care facility during the week so I can catchy breath.

  38. My husband had dimentia, and I kept him at home, as I was able to care for him. My main challenge was caring for his incontinence – both with his bowels and bladder. But I learned to cope with it — it was like caring for a child that has not learned how to detect this body operation. I was blessed that he was very docile, and always did as I asked, told or directed with hand signs. My first inclination that his brain was working incorrectly was when he completely forgot who a friend from high school day was, as he told many stories of this particular friend. As time went on, he gradually had problems remembering his own children's names, and would write them down and keep them in his billfold. Long story short his heart surgery, hip surgery, and bilateral hernia operation also took a big toll on him. The last year and half he barely communicated orally. I do feel though that I did not show enough affection to him daily, like hugging and kissing him – as he passed away in September and I miss him so much. He either had a small stroke where he couldn't walk, or the dimentia just finally took that ability away from him. Doctors didn't seem to really know. All in all he lived 7 years after I first noticed the symptoms. An Alzheimer/dimentia home would have been way to expensive. We would have been married 62 years this coming November. Our family all have lived close, so I had their support. I had home health care for awhile, but they don't really have the authority by Medicare to help in all aspects. I made arrangements for someone to come to the house to shave him, cut his hair and clip his toenails. I was able to take him with me to grocery shop, and eat out until the last three months, when I realized he really was not enjoying the car rides or having to get in and out of the car. So started to have one of our daughters come to be with him while I got out. And started to just go through the drive thru's at restaurants. I was getting so I really did not want to prepare all the meals. It is hard for Alzheimer/dimentia patients to have change – so I tried to keep a definite routine and I think that helped him a lot. Like I said, I have been very fortunate that my family was close.
    However, I do think it is less expensive to keep them at home, and hire help if at all possible, and it is familiar territory for them. There is no golden rule set of answers though – as each patient is different.

  39. My mom who suffers from Alzheimer’s has been wanting to “go home.” My dad is her primary caregiver and they have lived in their home for the past 34 years. I know this is common but any suggestions on how to handle this. She gets very angry with him.

  40. i have recently moved my dad into my house as he has been diagnosed with dementia. and i find my self getting stressed out with him here is there anyone out there that can give me some suggestions on helping my dad he acts like a 2 yr old in public and it just breaks my heart to put him in a assisted living facility he is 68 yrs old please help me…..

  41. My mom has dementia and it tears me up every time I visit her. Today she tried to bite me. I left in tears. She was once such a loving,sweet person. I wondered if you have found any blogs or books that can bring even a little comfort.

  42. Please help me!! My 85 yr old mom has dementia. She is in a hospital right now which medicare is not paying for her stay as they say dementia is not a medical. She has not only Medicare but blue cross / blue shield. She cannot afford private pay and does not qualify for medicaid. What do we do.

  43. I Havel had my mom in a home for about a year now she seems to be adjusting I see her once a month but she is fading fast so I call her every day I don't know what else I can do I really love her it breaks my heart to see her this way

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