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Alzheimer's
With Mayo Clinic health education outreach coordinator Angela Lunde
Caregivers can find silver lining
A primary caregiver of someone with Alzheimer's disease is faced with tough decisions at a time when they are feeling loss, grief, resentment, fear, and sometimes depression and exhaustion.
The toughest decision I see caregivers faced with is moving their husband or wife, mother or father to a care facility. As one writer said, "trying to decide when to pass the torch is a heart wrenching dilemma."
Feelings of obligation and/or guilt often delay their decision to move their loved one with dementia to a care facility. But, who can blame these husbands, wives, sons and daughters? Letting go, even when it is clearly the best thing to do, is nonetheless devastating.
Just possibly, and with time, these once primary caregivers may come to see a "silver lining" in their decision to move a loved one. Once a loved one is placed in a care facility, the stress of providing daily cares, constant supervision and worrying about safety and wandering is lessened.
Instead, the role of "caregiver" is relinquished while the role of husband, wife, son, or daughter is restored. Now time spent together can include taking walks, reminiscing, listening to music, watching favorite movies, and just being in one another's company. This can be a time both enjoyed and cherished.
People will forget what you said,
People will forget what you did,
but they will never forget
how you made them feel.- Maya Angelou
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My Mother is 83, has not seen a physician in 4 years, refuses to see one, deteroriating mentally with obvious signs of dementia/alz as well as deteroriating physically yet still has enough clarity of mind that if I attempted to take her to see a physician, she would have to be forced, screaming/crying, etc. and therefore, placing her in a possible stroke situation. I am at my wits end. I cannot get assistance from any services unless I have a physician's signature; there are none who make 'house calls'; I can't get her medication to help her rest/sleep. And, on a selfish note, I am exhausted, have no children or siblings to help other than my husband who has a very stressful job and the current situation is not good for him as well. PLEASE, some suggestions with regards to getting a physician to come see her....can't even get a nurse practioner without a physician's signature, where to look. The local agencies are of no help and unfortunately I do not have the resources to get in house care. I'm not whining but am just overwhelmed and do not know where to turn. Thank you.
I find being kind to my spouse means so much to her for she recognizes a change in tone of voice or any negative reactions. She may not be able to focus or do simple things she once could, but a little help and making her feel responsible without pressure is so important. I have help from a fine person who cares for her and is sensitive which lets me attend some of my board meetings and get to the store, etc. Hearing her say she is so happy is worth so much. My outside help gives me the opportunity to have at least some normal time without ever losing my feeling of responsibility.
my mother is 90 and is in a care facility. I would guess she is in stage 3 as she still knows the family and sometimes is quite cognitive of whats going on around her. My question is this: she is on several medications for alzheimers to control her behaviors etc.... my sister says we should take her of all meds and let the disease take its course, I guess thinking that she would die sooner. I worry about this decision because the meds keep her behaviors manageable, I think she would be quite aggressive without it. what does anyone think? or recommend?
I have been told that she can't remain on anti biotics indefinatly.
WHY NOT?
This has given her quality memories and comnversations. She has terminal Colon Cancer. She is going to die regardless.
IS IT NOT BETTER? For what ever time left to give her propholatic anti biotics to keep her mind working till she passes.
Finally our family docter since she gets bladder infections over and over and the catheter must remain in her to continue with 500mg of Cipril daily.
Thank you, Thank you we can again have some meaningful chats.
Has anyone else experienced this? Or? Are there any studies on this if so how can i locate some information on this.
By the way I am a 52 yr old male sole cargiver, I gave up my work for the summer but had to seek employment as I am not a wealthy man. Home care here does not give sufficient help but I am determined to keep her at home till the end.
My family docter finally told me if it was not for the wonderful care she has ben given home she would be gone
My 88 yr old Mom was diagnosed with Alzheimers disease 1 yr after my father, her husband died he suffered from it as well a\s well as every major illness over a 20 yr period.
Point being drugs worked for a time. Remily seems the best however it is now combined with Ebixa. This woner druge has been awesome for her.
One and a half yrs ago she was diagnosed as well with metastatic colon cancer, she is now terminal after sailing through surgery knowing it was not a cure but to buy her time and quality time.
During this she after having an Ostomy done became urinary incontinent after that sdurgery and has been catheterised for some time. Every now and then she developes a bl;adder infection from the Foley Catheter.
The Strange thing is every time she has been hospitalised for this infection and given anti biotics she becomes extremely cognative. I have my Mom back!~We are once again able to have meaningful conversations for some time after the medication is stopped she declines again..
Responding to 12/04/07 9:33 p.m. comment--I'm caring for my 86 yr. old mother in law. I found the following to be helpful: Stages of Alzheimers's, Alzheimer's Association: http://www.alz.org/alzheimers_disease_stages_of_alzheiers.asp
And a book my sister in law sent entitled: The 36-Hour Day by Nancy L. Mace, M.A., and Peter V. Rabins, M.D. M.P.H. I hope and pray that this info. will help you. Just know, that you ARE doing what is right in trying to take care of your family! It will get to a point where you will have to make different decisions. But, know in your heart that you did everything YOU could do! What's most important, is that you take some time for yourself! May God Bless you!
I wrote a comment 12-25 @ 2:16 Deane at the end is my ssignature
Deane
One thing I have learned in these 4 plus year is: So what if he ask the same question 5 times..that is not a deal breaker. I have a hard time accepting that he can't remember for it is foreign to me, but I tell myself, "He can not recall what was just said, he doesn't know where his shoes are and etc. I try to keep my body language dormant, and all guttural sounds surpressed, and yes I slip up at times. Every day is a great day if I get up believing that is will be a great day and loving the man while pushing the disease to the back burner. I say to myself every daay that this disease will not dominate our days. I respect, and I accept my role as a caregiver and love lives in my heart and follows us around. Bless all of you. Deane
As I read your comments, I feel a sisterhood to you courageous caregivers, what types of help are you all able to utilize from "Hospice". I hear some org.'s are wonderfully helpful, others not so much. Would someone care to share info.?
My husband(79) was diagnosed 4 years ago. We traveled without a problem until September o7 and I realized that he had entered the stage that strange surrounding confused him. In Switzerland he wanted to get in our car and drive home. Once home he was back to reality and happy. He has a great sense of humor and that eases us over some rough moments. He is a musician (65 years) and just recorded his third CD. He recorded 28 tunes playing his trumpet and singing all from memory. There are 3 more CD's in his future. He know me, his children but forgets the grandchildrens name (16). Am I sad, yes but chose not to give in to the sadness for if I did I would miss the love and connection we have today. I try to journal everday to see if he is the same as last year or slipping. He would like for me to spend my time beside him, and I do most of the day. My motto- It is no big unless I make it a big deal. I can do this.......
My heart goes out to all of you, and I respect your love and care and respect for yourself and your family members.
Please see the Alzheimer's Association website: www.alz.org for helpful information on stages, local support groups, tools for dealing with stress, and 24 hour support. Peace to you.
For those of you wondering, when is a good time to place your loved one in a facility center.... please do it before something terrible happens like it did to my mother. My sister and I did not want to place her in a facility. In the end, we were being selfish and not thinking of her safety. My mother fell and cracked her head open. If not found within a hour, she would have bleed to death. She has now been in a nursing home now since Feb 2007. It still isn't any easier having her there... she fell and broke her wrist in Aug. and as we speak she is in the hospital with Phonomia. My sister and I take her out every 3rd day for dinner - I feel home is reality and being w/ family will keep her brain stimulated. She is stage 3 and does knows our names. However, she cannot eat herself anymore and barely can walk. This is the hardest thing I ever had to go thru - you need to have faith in God and give him some of your troubles. It does make it easier...
When I read the comment from JJ - saying her mother is in stage 3 of ahlzeimers - I didn't realize there were "stages" - I am caregiver to my 92 year old father - who was diagnosed with dementia of the ahlzeimers type almost 2 years ago - and nothing was ever said about stages - can anyone expound on this? -
Yes, I agree. Determining the best time to commit my loving wife to a care facility is the most difficult decision I've faced thus far! On one hand, I want her to be at home where she is comfortable is one option. However, maybe having her live with others who share her malady might be better for her in the long run. At this time I have no answer, but plan to have her stay with me in our home as long as practical. What's practical? Don't have that answer either, but I'm sure I will know when the time comes.
Thank you for this timely post. I am now looking for a place for my husband who has early on-set Alz, diagnosed six years ago. Your comments have helped me. It is very stressfull caring for him 24/7. I will look for that silver linning, but is is a difficut time for me right now. Darlene
Where do you draw the line between Alz and dementia. Mom is in nursing home, some say she has Alz, others day dementia. She knows who I am and also my dad. She seems to know what is going on around her. There are times when she will have a wild look in her eyes that scares me.There are times where she will swing at you not meaning to. She is very agitated and the bottom line is she wants to die. She is refusing all of her meds except the ones they put in drink where she cannot taste them. She eats very little and also drinks very little. She cannot do anything for herself. And she has been slowly deteriorating since last December when she had serious infection and managed to pull through. Why?? We don't understand. So, what is the difference between Alz and dementia?
I am just now embarking on this process for my Mom. I've visited facilities and am now getting on waiting lists. It is a difficult process for me and my family. I know when the time comes for Mom to move it will be even more difficult.
My mother was just diagnosed with Alzheimer's and she is in Stage 3 -- I just learned this last week. My brother came from PA (we live in FL) to visit and he died during the night. I am truly at a loss right at this moment because I have been the one being the caregiver and I don't know what will happen to her if something happens to me as my health is not good. I told her today that we have to make sure she is taken care of. I don't know if she understands what I mean or not.
My mother was diagnosed in April 2003 and my dad took excellent care of her until he died this past January 2007. She now lives with me and my siblings take care of her while I'm at work, but I am the primary caretaker other than that. It is a rewarding time but also very stressful. I know it will be hard to make the decision to place mom when the time comes.
My husband was diagnosed in Sept 2006 and died
Nov 6 2007. I had to call in Hospice to help me when he got where he could
not walk Oct 4 2007. These people were a blessing to both of us during this time. They treated him with
so much dignity.
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