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Nanieine Asked November 2012

Do you think it is a good idea to bring my mom with dementia "home" from the hursing home for a visit?

It's been 7 weeks and my mom's dementia is getting worse. She lived with me for 32 years (we have a mother-in-law flat in our home). She was totally independent until this horrible disease took over 7 weeks ago. I thought her nursing home stay was going to only be for re-hab because it looked like her mind was getting clearer and she started walking with a walker and assistance. The therapist says her paranoia may diminish if we bring her home. I already feel guilty for having to leave her there, but the day after admitting her I had a nervous breakdown. My family doesn't think I can handle taking care of her at home yet, and if I'm honest with myself, I know they are right. I want her to relax, and now I feel she may only do that if she is home. I can only take her out for 4 hours a day, and I'm wondering if I brought her home for those 4 hours if it would help or hinder her. I visit every day, and I only live 5 minutes from the nursing home. This is all new to me since mom has had her "wits" for 95 years. Now all of a sudden she's been diagnosed with Demenita with Lewy Body. Can anyone offer any advice?

Nanieine Nov 2012
sunflo2: Thanks alot. I really have to concentrate on myself and you are right, I have to come to terms with this. I do have an older sibling who never helped in the 32 yrs I had mom. Now she's finally coming to visit her twice a week. She really wants me to bring mom home (says it breaks her heart when mom begs her to take her out of there)...She hasn't offered to take mom, and when I suggested that if I bring her home she take her every other weekend so my husband & I can have a little break, she just turned her head. She's another "tough" personality person....so I really need help in making me a stronger person. All I can do is one day at a time, and I really appreciate all your posts. I am going to take your suggestion and make mom a book. I know she will enjoy it.

sunflo2 Nov 2012
Take care of yourself first! You aren't of benefit to anyone, including your mom if you are anxious and have a breakdown. Take some time to get rested and councelled (and i would say you should consider 60-90 days). Your mom won't know the difference or remember the difference -- so maybe just tell her you will bring her for a visit "soon" without a specific timeline. 7 weeks isn't probably long enough for her to have fully adjusted so I would leave her there for everyone's benefit without changing her environment -- you will need to come to terms that you can no longer care for her at home as the skill level and time required has escalated beyone what you can offer -- in other words; you've done whats best for your mom to get her the skilled care she needs. Now you can concentrate on quality time with her vs. caregiving and meeting her physical needs to the point of exhaustion. I've suggested before; but maybe take photos of her old home, friends, family, etc and compile in a book for her (shutterfly) so she can sit and look at it and enjoy those memories. Do you have special momentos, pillows, blankets, curtains that she can have in her room to make it seem more like home? I've also heard of making a blanket or quilt out of old clothes, sheets, blankets, curtains, etc and quilt together as a "memory quilt" for your loved one to enjoy if they no longer have all these things in their new surroundings. Just some thoughts. I wish you the best and you have so much to be commended for in taking care of her and opening your home to her for so long. I could never do that. Also, don't take any of the mean things to heart; this is such a hard time for them and the disease is what is talking not your mom -- my mom says awful things that I no longer take personnally nor try to correct her on as I know she couldn't possibly really believe them if she were in her "right mind" (she has dementia and is 89).

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Nanieine Nov 2012
Cattails: I will definitely stay in touch. I was able to get an appointment for next Tuesday Dec 4th. Thanks again.

OncehatedDIL Nov 2012
7 weeks is not enough time for your mom to relax in her new space. Personally, I agree with the mindsets of giving her plenty to time to acclimate in her new home. I think bringing her home for visits delays that transition.

My MIL really began to settle into her SNF after about 8 months. This may seem long to you. When you consider that you are changing someone's entire life, it's not really that long. Along the way we did follow the advice of not going up there constantly. Some people practice daily visits which can block their family members from bonding to their new situation.

My MIL progress was likely slowed down by the death of her spouse (she roomed with my FIL) so she had a grief process during the same period.

Along the way we have seen constant progress. It's been 10 months now. She recognizes her resident friends and the nursing staff. The vascular dementia makes it so she can't remember their names. She has daily rituals - aren't daily rituals the substance that give everyone security?

Be patient, give her months to adjust. Give yourself the peace of mind that knowing when you aren't there her progress toward adjustment will happen faster.

I visit with MIL 3 times a week and keep my visits between 60-90 minutes. While to some that may seem wrong, her adjustment to and contentment with her new home, make it right.

anonymous95109 Nov 2012
Nanieine: I'm glad my post was helpful. I don't know what type of counselor is best for you, but if you have had success with the one you have used in the past, stay with her. You might ask her if she thinks you would benefit from grief counseling. Aside from the fact that your mom is having such a difficult time, It is also a big loss to realize that you can't be all things to all people. Be very kind to yourself and stay in touch. I'll watch for your posts. Hugs, Cat

Nanieine Nov 2012
Cattails and Cmagnum thank you so much. Just getting your comments makes me feel better. I do have a LCSocial Worker I've seen in the past. My daughter's first baby was diagnosed w/ anencephaly when my daughter was 4 mos pregnant. Juliet was born and passed 5 minutes later on Nov. 27, 2002. Yesterday she would have been 10. During that time I had counseling and got through it. I had a healthy grand-son, then 2 yrs later my granddaughter was born with a heart defect....again to therapy! She survived open heart surgery and is a healthy 6 yrs old today. I was able to discontinue therapy since everyone saw my improvement. Then my next granddaughter was born (an opps) 3 yrs ago. She is a little blessing! She keeps me smiling all the time- Plus in the delivery room they told me her middle name (they kept if from me all the while) They gave her MY middle name.. tears of joy streamed down my face. 6 months ago I realized I was starting to "feel" the anxiety again. I called the Social worker and started to see her. I was feeling overwhelmed with my mom. As much as we love each other, I was the only one she would also be "mean" to. My sensitivity doesn't help either. Sometimes I wish I could be as strong willed as she is, but then I wouldn't be me. I'm soft hearted (like my mom's mom was), and I know I need help. After the breakdwon a psyc.Dr. saw me and basically told me she thought I was doing fine. She told me to call the SW and continue with her since she knows my history. After reading your posts, I called and left a message this morning. I'm waiting for a call back to set up an appointment. She is a Licensed Clinical Social Worker for Behavioral Health Services. Is this the type of help you feel I need? I know there is a caregiver support group re: Alz. that meets at the hospital every 3rd Friday of the month. I'm going to call them today too. Cattails, you sound like you really know what you are talking about. I wish you were the person I was seeing. :-)
You've hit the nail right on the head. Thank you both for your support. Please keep in touch. I can tell I'm going to need people like you around! Thanks again.

notrydoyoda Nov 2012
I'm sorry to hear this. The sad reality is that dementia only gets worse. My mother went to the nursing home for what I thought was going to be rehab from a broken hip, but her dementia became worse and she has never walked again. Sometimes, her mind is clear, but other times she is confused. She thinks she's been there 2 months, but she's been there almost 4 years.

People with dementia do not handle change of location very well at all. The key word about her paranoia is 'may'. However, like you write above, you honestly know that you cannot handle taking care of her at home. You have not done anything to feel guilty for and I hope a therapist can help you to not be so hard on yourself which probably contributed to your nervous breakdown. Your mom is safe and being cared for. It sounds like you really need to focus on taking care of you which sounds long overdue.

anonymous95109 Nov 2012
Nanieine: First of all, I'm sorry for all you and your mom are going through. It may be a little soon, considering your health, to be bringing her home "everyday" for 4 hours. Maybe on a specific day when family is available to help. Or out to lunch a couple of times a week. Give "yourself" some time to relax. If your mom has lived with you for 32 years, I don't imagine you really know what it is like to have a life of your own and it will take you a year or so to really begin to understand the changes that you are dealing with now.

Maybe it would be good for you to get some counseling, where the focus is really on you, your feelings and some pointers on how to help yourself get separation from the the one who always takes care of others. That's not a criticism, just something to consider.

You are in a difficult position and I can understand the depth of your feelings, guilt and maybe even the desire to save yourself. If it's any consolation, your feelings are perfectly normal.

I think the choices are limited and it's not always possible to have the perfect answer. I would humbly suggest you save yourself first. I'm sure you will feel selfish in doing so, but to do otherwise will not provide what you need.

If you feel your mom is being well cared for, then maybe daily visits are not necessary. Maybe every other day.

I hope Jeanne Gibbs responds to your message. I think she can give you excellent advise as her husband has Lewy Body and she is such an authority on the subject.

My heart goes out to you. We placed my dad in nursing home care two months before his passing, so I know your concerns and the questions you have in your heart. Your asking yourself what you can live with. That's only a question that you can answer for yourself, but I would support you in putting your self first. Maybe it's time and maybe if you had some counseling you would find a way to have some peace in accepting what is or at least some support in continuing to care for your mom.

I know you want to do all you can for your mom, but it's not selfish on your part to also want to survive.

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