Friday, July 2, 2010

Advice needed - Considering making a huge change

I’m thinking of taking Ma back to live with me again and would appreciate hearing from anyone who cared for their loved ones suffering from Alzheimer’s at home.

Mom lived with us for a year when she was first diagnosed. When she started wandering, it was advised by all of her doctors, her social worker, and her psychiatrist that she move to a rest home. I heard horror stories of how wanderers got out of the house, even when family members were sleeping in the hallways right outside their bedroom door. I’ve also heard of the emotional and physical toll the disease takes on caretakers.

Of course, I know that firsthand. Caring for my mother almost sent me to the hospital twice. So why would I consider doing it again? For a couple of reasons.

1) No matter how wonderful the rest home / nursing facility, there is nothing like being cared for by your own daughter / family. And even if the patient to aid ratio is excellent (like it is where my mother is), there is no better ratio than 1:1.

2) After hearing from both the Alzheimer’s Association and the Director of Nursing at the rest home that my mother is not benefiting at all from me taking her here and then returning her, I can’t live with her coming to my house just once a week. Is that part about me? It certainly is. I can’t deal with it. My heart can’t take it. Keeping her away from the place where I can dote on her and keep her swollen legs up, and feed her pasta, having her away from the place where she feels most comfortable and safe, it is all unacceptable to me.

So what would I do differently?

First, I would give up my business. I would no longer work. I have someone that I trust completely and would hand over all of my clients to her. We would then become a one income household but we can swing it with a few adjustments.

Second, we’ve considered moving closer to family. Right now we live 2 hours away from my brother and an hour away from aunts and cousins. Being closer to them would at the very least, lend me quicker emotional and “in a pinch” support.

Third, I would have a nurse come a few times a week to give me a break and I would have my mom go to a program that starts later in the day so that she can sleep in a bit. This may help avoid the knock-down, drag out fights we had in the past that usually left me in a puddle.

Putting my mother in a home never sat well with my heart, and though my head got it, there was a part of my brain that said I could keep her at my house if I arranged things differently.

But everyone is telling me its impossible – doctors, nurses, family. She is too sick and I am of a “delicate” nature.

I need someone to tell me I can. I need someone who has done it to tell me it’s doable.

I appreciate any advice...

19 comments:

  1. Lisa, your post broke my heart.

    I never had my father live with me, and I am in awe of anyone who takes on that loving but monumental challenge. I am really not in a position to give you advice, but all I can say is this:

    In the five years that I attended an Alzheimer support group, I heard many people around the table talk about caring for their loved one at home, and how incredibly difficult it was. The caregivers told heart-breaking stories of waking many times in the night to help him or her to the bathroom, changing sheets and pjs and washing floors when they didn't get there in time, and breaking down physically because they just couldn't live on no sleep and constant worry. They often ended up having to find a nursing home anyway, not from lack of love, but from bone-aching fatigue that would only get worse as time went on.

    In short, as our support group facilitator often said, you can't take care of your mother if you don't take care of yourself.

    But the fact that you wrote this post in the first place tells me that perhaps you know this already?

    On the other hand, who am I to tell you what to do? If you and your husband think you can handle all these changes in your life (not just your mother coming back, but giving up your business. living on one income, and moving to a new home in a new community), maybe you know what's best despite any outside advice.

    Whatever you do, Lisa, I wish you all the best, and I'll be watching to see how things turn out. Good luck in your decision.

    Gilda

    PS It hardly seems significant, juxtaposed with the import of your post, but - I love the new layout of your blog.

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  2. Gilda, thank you. I hear you and the majority of the advice I am getting very loudly and clearly. Yet, I am pushed in the other direction.

    Yes, during that year when she lived here, I got up quite a bit during the night and it is exhausting. I also had to change sheets and wash floors many times. The lack of sleep was an issue. I don't mind the other part.

    Somehow I think if I don't have to work an outside job and if I'm closer to family, it will be better. Maybe I'm kidding myself.

    I know this: I was miserable when she was here and I am miserable AND heartsick when she isn't. So why not eliminate the one AND make her happy at the same time? :-)

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  3. I just wrote a paper on Daughters Caring for Aging Parents and not surprising, caregivers are exhausted and tired but are very satisfied in being able to look after their parent. I think if you have enough supports, it mitigates the stress and makes it easier. Also, knowing at a gut level that this is what you want to do, not need to do. I know that we could not look after my Dad and that a nursing home was the best option, but as caregivers, the guilt is big. I think by taking the time to make this decision, that you are clearly heading in the right direction, whatever the deciion is.

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  4. I feel so badly for you. Alzheimer's puts you in a position (excuse the phrase) damned if you do and damned if you don't. There is so much guilt both ways. I think I know what you are going to do. It may work but it is going to be very tough.

    One question. Are you sure your Mom is aware enough of it being her daughter getting up all during the night, changing sheets and mopping floors? I bet your Mom, if she were healthy and at herself would not want you doing that. Moms are sort of like that.

    I wish you the very best in whatever decision you make.

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  5. Lisa, please think long and hard on this decision. If your mother had a disease where she would slowly get better, it would be different. Instead, you know that things will get progressively worse, which is heartbreaking of itself. Ask yourself if you want to move her to your home only to have to take her to the hursing home again in six months. I sense a great deal of guilt on your part. I hope you know I say this with love, not condemnation of any sort. Let the guilt go, it's of no benefit to anyone in your family. Your mom is in a safe environment now and that would be #1 for me were I in your situation. I only say all this because you asked. Your husband has been so supportive through this sad journey. Give him an extra hug today.

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  6. Lisa, I asked my husband to read your post today, because I was so upset for you, and I wanted to hear his reaction.

    He had attended every session of the Alzheimer support group with me for over five years, and mentioned the same real concerns regarding caregiver burnout. He also reminded me of another tentative problem:

    With Alzheimer patients, familiarity is a huge issue. When they are in a familiar environment, they can usually function much better than when things are new and different. We saw this on a very small scale with my father when we bought him a new kettle with the on/off switch in a different location - he couldn't figure it out. When I replaced it with a new kettle similar to his old one, he had no trouble.

    This may seem like a silly example, but I think it reflects a basic truth about this awful disease. It's possible that, if you bring your mother to live in your new home, she may function even more poorly than she does now because everything will be new and different.

    I hate to sound so negative, but I just wanted to send you this additional information, so that you can make an informed decision. But whatever you do, I'll still support your choice and hope for the best for all of you.

    Gilda

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  7. Lisa,
    This is my first comment but I felt so compelled to send it. My dad was diagnosed with Alzheimer about 18 months ago. I also am of Italian decent and grew up North of Boston as well. My dad is still at home with my Mom and we have brought in as much care as humanly possible. But the time will come that we can no longer care for him at home it will be hard to accept but I know it is the best for all. As someone else stated this disease does not get easier over time it just gets more difficult. All my father's siblings and his mother have had this disease, my aunt is in the late stages there is no way she could live anywhere else but a nursing home. What I am trying to say is you have gotten through the tough part of making this decision and placing your mother in a good environment. She had no idea where she was or who we were. It is not selfish to think of yourself and your husband. Your mother will do better in her environment when she becomes more familiar. Watching my Dad sit home all day doing nothing is heart braking we only wish we could make the move now but he will not go. So we pray for the day that he is unaware and we can bring him to a place where he can have care and companionship. Please take care of yourself and your husband. You have done the right thing.

    Andrea

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  8. Andrea, thank you so much for commenting. It means a lot. May I ask how your mom (being in the house with him and hence his primary caretaker) are coping with caring for him? How are you all with the day to day tasks? Is it taking a tremendous toll or are you managing?

    I hear you clearly about the heartbreaking part of it. Would you mind commenting just a bit more on the physical part of it for your mom and your family?

    I did it for a year but while working and limited support. I will not be working this time and will get a nurse in a couple of times a week. I am hoping, if I make this choice, it will make all the difference.

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  9. Gilda, I am sorry you are upset! I don't want you to be upset :-(. I appreciate you having your husband read my entry as well, just to be sure you were giving the right advice (I am so touched by that). And I do hear you loud and clear. But it and I just feel all wrong this way. it is ALL WRONG. Maybe the key is in acceptance but I can't get to acceptance without what I please is a good and decent fight and truly honest effort. I'm not sure I feel my effort was all that honest the first time because I was unprepared.

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  10. Nancy, yes, it is true I am motivated partially by guilt. (I do know you speak from love!) But not totally. I know I can give her better care. I would be sure her legs stayed up so they wouldn't get swollen, and that she drank enough water so that she wouldn't get dehydrated. I would take her out to visit family and make sure she got a good walk in everyday. Doesn't she deserve this? I know I deserve a life and health as well. And I know this will affect both. But if I'm diligent this time, can't it be better? Isn't there a chance? These are the questions that are left unanswered at a very grave expense - my mother's health/happiness (and mine too). Ugh...what a thing. I feel so sick inside.

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  11. Latane, thank you for commenting. You are so right! "Damned if you do...." Yes, my mom is definitely aware enough to know she is not home with me. When she was much more aware (when she first moved in) she gave me the guilt trip. You see, I am 2nd generation Italian. My mother and Aunt cared for my grandfather instead of putting him in a nursing home, and my other Aunt cared for her mother until she died. My mother would have expected this from me. No question.

    My brother said, "back then, our mother and aunts had a whole neighborhood and multiple siblings to help. times have changed. there isn't that support system in place anymore." And I know he is right. Yet....

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  12. Dad's Dementia Decline - Thank you for posting and I couldn't find your name on your profile so sorry for not addressing you personally. May I read the paper you mention?

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  13. Lisa,
    It has become very hard for Mom. Dad is a World War II vet so we are very lucky to have a visiting nurse every two weeks. We also have someone that comes three days a week two hours at a time all supplied by the VA. Mom goes to a support group actually in Saugus for caregivers. It is held at the senior center every other Tuesday. I am one of three sisters but I live out of state and so does my younger sister. So my older sister is local and she takes on most of the day to day although Mom takes care of all the cooking etc. Dad is still at the early to mid stages so we can handle it, but he is so obstinate about going to any type of facility even an assisted living one. ( I am sure you understand, Old Italian Men)...LOL..... I hope you understand my comments surrounding your Mom. I can only imagine how hard it is for you, but know your Mom is in a safe place where you can visit and in time she will think of it as her home. We are in a position that no one would take Dad because it would be against his will, but we are not sure how much longer Mom can handle this. They are both in their 80's. My father's sister is really at the final stage and my cousin tried for so long to bring her out or to his home. He finally stopped when he realized that he was doing it for himself more then her. She has been so much happier since her environment isn't changed routinely. Lisa, it is a horrible disease but don't let the Italian guilt get to you. Your mother would not want you to. All the best.
    Andrea

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  14. I can certainly send you a copy. Its in for marking right now but I should get it back next week. I was thinking of posting some of the information on my blog anyway. Send me your email so I can send it to you!
    Lisa

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  15. Lisa, my email is lisajgurney@gmail.com....thanks so much!

    Once this weekend is over (I am a pet-sitter and have a lot of work) I intend to read through your blog in detail.

    Andrea, It helps so much to know you get the Italian part of it. It is such a BIG aspect of it. I watched my mother care for my grandfather til his death. It is hard to reconcile that with having my mother in a home. God help me.

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  16. 當一個人內心能容納兩樣相互衝突的東西,這個人便開始變得有價值了。............................................................

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  17. I am not dear abby so have no advice to give. You know my heart and so must know that I believe the cliche that Home is where the heart is. Where is your heart? Then that is where she shall be. And you will have all the help you need to be able to do it because you have done the work to find out what resources are available to help. You can do this until you can't and then there will be others who can. I will just say that I love you and will be there with my bingo board and a manicure kit.

    PS
    Who would of thunk that ol' Josie would be so helpful after all these years!

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