The only way to have a friend is to be one....Ralph Waldo Emerson

Thursday, April 7, 2011

Tough Choices - Living with Alzheimer's Disease

First I would like to Thank You, each and everyone of you who offered kind thoughts and prayers for my family yesterday.  You are truely appreciated and so are your prayers.

I have decided to shed a little light on our family situation, for one to be able just talk about it feels good.  I thought maybe there would be some advice to be found as well.

First, I'm going to share a story, a story of a loving, generous, kind-hearted woman that came into my life about four years ago.  She was born in 1925 to an unwed mother, in those days taboo, she found a loving home with "new" parents, who adopted her and loved her as their own.  She grew up in the country, boarded with different families during her teenage years so she could go to high school and get a diploma.  She worked for these families in exchange for room and board, housekeeping, tending to their children, etc.

She graduated, got married, a job and had a child, her only child.  Without details, that marriage didn't work, and she divorced (kind of frowned upon too back then too).   After a while, she remarried, moved back to the country, where she continued to work her job, helped on the farm and became a mother to her new husbands' children.  They had a happy life, finally retired and sold the farm, did some traveling - even got to dip her toes into the Pacific Ocean once.  While on the farm, she lost her one and only biological child to a hunting accident at the age of 12.  Soon after retiring, she lost her husband to a stroke.

Still, she persevered, moved on with her life and made anew eventually.  This time she married my husbands' father who had lost his wife (my husband's Mom) to cancer.  She welcomed even more children into her life, although they were grown, she thought of them as hers. 

Now, my hubby and his father never had a close relationship, not the kind that a Father and Son usually have.  So, there was never much contact.  I didn't get to know this woman until the passing of my hubby's Father just a few years ago. 

Over the past 4 years, she and I have developed a very close relationship.  I take her to all of her doctor's appointments, for groceries, do her yard work, read the papers that confuse her, involve her as much as I can in our lives and listen to her stories of old many times which she can remember as if it happened yesterday.  She still lives alone, not too far from us, but I don't think she will be able to for much longer.  This blessed soul is suffering from the affects of Alzheimer's Disease.  I have watched it progress, seems to be getting much worse over the past few months.  Up until now, she has been able to carry out daily activities with little difficulty, now daily life is getting confusing too.

Her other step-children have really no involvement in her life, yes, they send cards and gifts for holidays.  They call on the phone once in a while, but are not there on a daily basis.  Some live too far away, understood, and others simply don't take the time.  This decision would probably be much easier for them to make, but I don't know.

Now we have come to a point in our lives and hers to make some tough choices.  It is time to make these decisions while she still can.  Does she sell her home and move into an elderly home, that's one choice.  Do we have her move in with us, that is another choice.  While I would love to jump at the chance to offer her a place to live, surrounded by people that love her, we simply don't have the room, we would have to build on.  There are so many things to consider, for our lives and hers.

This is the first time in my life that I have been personally affected by this disease.  I have known many other families that have, but until I became personally involved I really didn't have a true understanding of how difficult it is or can be.  If we were to build on and move her in, eventually we would not be able to leave her alone.  As this disease progresses, she will need 24 hour care and supervision for her safety.  That's where the tough choices come in, we have a family with a young child.  Do we sacrifice being able to go for away for the occasional long weekend or even a day trip with our daughter while she is still young, being able to make spontaneous decisions?  Or, do we sacrifice being able to offer a warm and inviting place for our loved one to live out her days? 

I would be grateful to hear your thoughts and/or advice.  Hubby and I have talked and talked about it, yet still we can not decide what would be best for everyone involved.  If anyone out there has been through this type of situation, is living through this situation or knows someone that is, your advice would be greatly appreciated.

Blessings to All my Friends,


  1. I'm so sorry for your whole family.

    My grandmother suffered from this disease. The best thing the family did was hire a live in care provider. This way, she was able to be in her own surroundings and the caregiver fixed meals, did light housecleaning, and made sure she took her daily meds...for room and board and pay.

    It was an ideal arrangement. As her physical body started failing more, the family was looking at putting her in a nursing home.....but God called her home just in time to avoid that turmoil

    Prayers that all works out.

  2. Traci,

    My husband cared for his mother when she was diagnosed with brain cancer. He was able to go back and forth between her house and ours for awhile. She was in hospice care and we were able to get 5 days a month respite care for her and us. We did, but the second respite care, the nursing home didn't give her the meds she needed for her seizures and she wound up in the hospital. We then had to make the tough choice. The hospice center agreed to keep her, if we would pay the portion that medicare wouldn't. We decided that was the best course to follow. My mil lived for 7 more weeks and then passed on due to her cancer. It's a tough decision. My hubby sometimes had to choose between being at our sons baseball games and taking care of his mom. I know you will make the decision that is best for you and your family. If you decide to take the member into your home, look to see what kind of supplemental services may be available to the patient and the caregiver.


  3. Traci~

    My heart breaks for you & the tough decision you'll have to make. You are a wonderful & loving soul to be considering taking her into your home. You have already taken her into your hearts. I'm thinking you could find a home for her that is very close to you so that you could visit her & give her lots of love & companionship. I think the majority of us would take in a loved one in a heartbeat, but imagine the guilt you would feel if anything happened to her in your home. It would be devastating~even though it would not be your fault in any way. She needs someone who is used to taking care of people in her situation. There are a lot of loving & caring people out there that would be able to give her the care she needs. This is just my humble opinion. You need to do what you feel is right for your family.

    Sending my thoughts & prayers out to you my friend~Becky

  4. Traci-I lost my father to this horrible disease last July. Mom took care of him for as long as she could then I had to step in and have him put in a personal care home. He was in the home for 4 years but it was not an easy decision and the guilt I lived/live with still eats at me. But I know Mom did all she could and she could not handle him and his needs anymore. You need to think of your family and how it will affect your daughter. Pray about it and God will lead you in the right direction. No one can tell you what to do you will just know when the time is right. This disease affects everyone differently so read as much as you can about it, maybe that will help with your decision too.
    Praying for you and the family
    Hugs Theresa

  5. Traci, I am living with this right now with my own Mother.My sisters and I take care of her each day. We are lucky that she can still stay home at night alone but I don't know how much longer. We know that keeping her home is the best thing, because she knows her home yet. When she has to move , then she will be lost. I know all the hard decisions that you have to make. There is no right or wrong one. You need to do what is in your heart, think of your family. Pray to God. It is hard, I will be praying for you and your family

  6. Traci, Five years ago my mom died of cancer and for the six months prior to her passing she begged me to come live with me. I lived 3 hours from her at that time. I spoke to many people about bringing her into my home- don't get me wrong I loved my mom with all my heart but after considering my well being and my families well being I had to let her go to a nursing home. It was a hard time for me and I visited her everyday but I knew I could not provide the care she needed. Talk to the doctor and anyone in your area that can give you good advice, but please consider your families needs too. It is a hard decission and my heart goes out to you. I can say at first I felt so guilty for not bringing her home with me, but after talking to hospice and friends I can say I am sure the decission I made was the right one for my situation. Pray to God, he will help you in your decission.

  7. Traci,
    My heart breaks for you, I just don't know how I would be able to make these decisions. So far in my life I've not had to deal with any such circumstances like an ill child or parent or grandparent or anyone who I was really close with. I believe you just all have to be open-minded and open-hearted and your faith and love will guide you in the right direction, remember, you will get all kinds of advice and personal experience stories, which will lend to the open-mindedness, everyone involved needs to be heard, their fears and concerns matter. It is not something set in stone either, if you make a decision and it turns out to be the wrong one, go in another direction. You can only decide what is right at this time, that may change.

    Big hugs and listen to your heart...your soul is never any more apparent than when your heart is breaking.


  8. Oh Traci, my heart breaks for you and the choices that need to be made. This disease is such a cruel one. I lost my mom to cancer just 5 monthes ago, that is awful disease, but Alzheimer's is so much worse....
    My only advice, it is hard to say... when I was in HS, my parents brought my Grandmother in to live with us, it was so hard, because of that experience for me, I would or could never be able to care for some in my home. You need such a large support system and don't always get it.
    I know it might sound cold.. I ran my mom to all her appts. sat with her during treatments. I was a walking notebook on her care, but I don't think I could of had her live with me if it came to is very hard on the family.
    There is no wrong decision in what ever you decide to do. Thinking of you! OLM

  9. This is a difficult post to read. I feel the tears coming up as I write this. My Father died of Alzheimer's three years ago. My Mother was primary care giver and he was able to live at home until two months before his death. It was very difficult for my Mother, as she had no help from others. All of us kids live in Alaska, 2,000 miles away from where my parents lived at the time. When the time came for him to move into a care facility, it was evident, as my Mom could no longer care for him. You will do what your heart decides. Weigh the experience of others and pray for the decision that is right for all of the people involved. My heart is with you. Vicki

  10. Oh sweetie Im so sorry to hear of this .I know this is weighing heavy on your dear heart.I never have had this situation ,my mother passed 9 years ago from cancer and she lived 8 hours from us in new jersey at the time.she wouldnt have came to live with us at all.she was close to her doctors and her husband.we did see her as much as possible and was there when she left only advice for u sweetie is put it all in gods hands,Its a toughie because you do need to think of your home and daughter.all the situations that could arrise.the best place for her would be somewhere she can recieve the care 24/7 she will need sweetie.hang in there my sweet friend.big blessings and prayers michelle

  11. Oh my goodness Sweet Traci, my heart aches for you. I have a very dear friend whose Mother has this disease. She has a small house on the same lot as her home and that is where her Mother lives, just a few steps away. My friend works a lot out of her home so she is there a lot. It has changed their life completely. The disease has progressed rapidly the last few months and continues to do so. At some point she knows she will have to put her in a care facility but she can't do that yet. Either her or her husband is always at home. Her children are grown so no issue there.
    She does have a brother that occasionally takes her for a week-end but it is confusing for her Mother when they do.
    It is just a tough, tough decision to make. I know this for myself, I would not want my children to have to move me in to their home and totally disrupt their lives. I love them far too much, and even though they might feel guilty, I take that guilt away by saying no, you are not going to do it.
    But, that is me. And as everyone else has said, it is a decision only you can make with God's guidance. And I will pray earnestly that He guides you and gives you peace in your decision. I am so glad that you shared with us and now we know just how to pray for you. What a blessing to have a friend we will probably never meet, reach out and touch our hearts and allow us to lift you the Throne of God. May His peace, and grace engulf you and His wisdom prevail.
    Big Hugs and lots of prayers!!

  12. Dear Traci-
    I am probably one of your newer followers, so you don't know me well, and have no reason to respect or value my opinion. I am also late in posting this, as I hestitated in responding at all given the aforementioned, my own private nature, and the fact that I don't know that I have any true sound advice to give to you. However, I felt the need to respond. My mother (who is 4 years younger than your MIL) also suffers from this horrid disease - although in a mild form. She is fortunate that my brother and his wife moved in to live with her years ago when they lost their home, so they are there now to care for her. I struggle so at the thought of her ever having to go to a nursing home, and fear it will become a tension within our family if we ever have to make that decision. The only perspectives I can offer you (which I'm sure you have already considered) are that whatever decision you make is likely only shorterm - your MIL's condition is likely to get worse, and, at some point, even more than your loving, giving, and nurturing nature can sustain. So, are the changes you will need to make (remodels, family upheaval, etc.) going to be the best in the long run? As someone else also said - you have given her a place in your heart....perhaps that is enough. With my mother, it would mean uprooting her from her home, her PLACE. With your MIL, even taking her into your home - as loving as that may be - would still be upheaval since she will be leaving HER home - so, is it wise to create another upheaval in your family and your life as well to try to diminish what will nonetheless be a traumatic change in your MIL's life anyway. Again, I hesitate to offer my advice - it seems so very contrary to what I would advocate for my own mother...and I, myself, am struggling with why that is. But, it is what I'm feeling - and I'm offering up my prayers for you. Only you will know what is right. And when you make your decision, do not second-guess yourself. It was what was right at the time. Best thoughts, prayers & blessing ~

  13. ohh Traci...I'm so sorry. And so sorry I didn't read this sooner. My heart goes out to you and the decisions you are trying to make. I'm a home health nursing supervisor/case this kind of stuff really is my life! Maybe home health care could be an option for her for she can stay in her home. You can arrange visits to be sure she's taking her meds, housekeeping, companionship, meal prep..all sorts of things. As it sounds like she's still able to make these might be an option for her right now.
    As far as selling her home...look DEEPLY into this...the unfortunate case in a lot of situations is if she ends up going into an assisted living or nursing home...they will suck up every penny she has. So look into options thouroughly! Be careful! You still want her to be able to enjoy the things she can for as long as she can!

    Assisted Livings are WONDERFUL. I worked as an assisted living director out in Califonia. There are a lot of differnt types offering different care. Id suggest if that is a way you go...look into one that can provide care as her disease progress's. That way she won't have to keep moving. Many provide your own apartment yet have 24 hour care. I have my apartment reserved back in Cali when the time comes!!!

    If you chose your can still possibly get home health. It wouuld be someone to come in and everything isn't on your shoulders. They can also provdie respite care. So when you go on vacation know she's very well taken care of.

    There are a lot of options out there. Do you possibly have an area retired persons center. They can give you tons of options and help you find out whats out there.

    Good luck! And I hope I didn't sound to crazy! If theres anything at all I can help you with...hollar!!!! the RN behind my name comes with some perks, lol!!!

  14. Hi Traci-- I'm a new reader and read your post, I just wanted to offer hugs and let you know I'm thinking of you.

    My mom had Alzheimer's and my first thought was she should move in with us but after talking and thinking everything through, she moved into a nursing home.

    We also have young children and no space for another body. I think everybody feels guilt one way or another. I feel we made the right decision. Thinking of you and your family as you go through this time in your life. I'm glad she has someone looking out for her.


Thank you for visiting & taking time to leave your kind words for me...♥♥


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