Is there a fact sheet or something that is available that I could share with all family members explaining the process, stages, etc., that our Mother will go through. There is no doubt in my mind that our Mother is in the final stages but I must contend with other family members when they come to "VISIT" and try to tell me what is going on with Mother when I am the caregiver 24-7. Please, please help me find somthing like a fact sheet that will provide guidelines/stages on what is going on with Mother emotionally, physically, mentally, and anything else you might be able to send my way. I have family members who come in and force feed her and then they get upset when she fights back or throws up the food they just forced in......HELP!!!

[This message was edited by kk on April 20, 2003 at 11:14 PM.]

quote:

Originally posted by Susan:
Dear KK,

I was just looking for some guidance on here on whether or not we should bring my mother home. We just found out that in addition to being in the final stages of dementia, she has cancer in her lung, liver, lymph nodes of chest, bones of her ribs and left hip. Sounds almost identical to your mom. Any information you can give us would be greatly appreciated.

Were you able to keep your mom in your home up until the end? If you had it to do over again, would you do it? How did it effect your family? Were there any complications to deal with? Do you feel it helped or hurt your relationship with her? How long did your mom live after that diagnosis?

If this is too sensitive of a subject for you I understand. We just don't know what to do!!!! We want to make mom happy but we have grandchildren on the way and have to help there too.

God bless!
Susan

I have no first-hand experience to share relating to end stage alzheimers at home. I have had some experience with cancer patients and hospice.

If you haven't explored this possibility, perhaps you should at least check into it. We've only used one hospice organization, a nonprofit affiliated with an order of Catholic nuns, but it has been a blessing to our family several times in the past few years. (We aren't catholic, by the way. These are nondenominational.) They have a lot more resources than just sending out nurses, which include a hospice house for respite care (i.e. when you need a break), chaplains and counsellors, people to literally hold your hand through the process and explain what's going on each step of the way. Then there is grief support afterward.

Our first experience was with my grandfather, who lived next door to me. Once we called in hospice, things really started happening. They immediately had delivered the equipment the family needed to help care for grandfather. They arranged aides to help him bathe and so forth. The hospice nurse spent a lot of time with my grandmother explaining things to her. They were also specially trained on pain medications and combinations of medications which added so much to my grandfather's quality of life in his last days. When he died, the hospice nurse came to be with us through the process and waited with us until the ambulance took his body. They even have volunteers to go with the family to the funeral home to make arrangements, although we've never needed this service.

We've used the same group later for several family members, and each time it was as good an experience as it could be under the sad circumstances.

Dear KK,

I was just looking for some guidance on here on whether or not we should bring my mother home. We just found out that in addition to being in the final stages of dementia, she has cancer in her lung, liver, lymph nodes of chest, bones of her ribs and left hip. Sounds almost identical to your mom. Any information you can give us would be greatly appreciated.

Were you able to keep your mom in your home up until the end? If you had it to do over again, would you do it? How did it effect your family? Were there any complications to deal with? Do you feel it helped or hurt your relationship with her? How long did your mom live after that diagnosis?

If this is too sensitive of a subject for you I understand. We just don't know what to do!!!! We want to make mom happy but we have grandchildren on the way and have to help there too.

God bless!
Susan

KK

I'm so sorry to hear about your Mom. Make the most of this time with your Mother. The memories will help with grieving later on.

You can also get videos, books and other things from the Alzheimer's Association. Post again and let us know how you are.

Vicki

Sugarlips

kegksc@aol.com

Thanks to everyone for your help. Just this past Tuesday we had to take my Mother to the hospital, she had gotten so weak. Unfortunately, while there her doctor ran many test and she has cancer in her bones, lungs, liver, hips, basically all over. So, needless to say Hospice is now involved. We brought her home and will do everything possible to make her comfortable unil the end. The doctor said he was being gracious if he could promise us 4 more months but to be pepared for less.

I did get some great information while she was in the hospital. She was in the University Hospital in Augusta, GA and they offer in room videos on various conditions, so with family members there we watched the one on Alzheimer's and it was great!!! It showed both sides of the caregiver and the patient. I wish I had know about this last year. Maybe there are other places that have such things and just maybe there is someone out there who may need this information.

Thanks again, I'll stay in touch.

May God Bless Each and Everyone of you.

KK

Cathy

It is nice to see you posting again. How are things with your Husband? I think you said you were going to try Memantine? Have you noticed any changes since beginning this medication?

Thanks for the great information to KK. This disease is difficult enough without having to battle your family as well.

Post again and let us know how you are.

Vicki

Sugarlips

I have another site which has great explanations about stages, etc. Try:

alzheimers.org

And again, my husband was only in mild Alz last May, into moderate in June, severe in late September, and passed on end of October. We had a very fast decline. It was mind-boggling. Surprised even the doctors.

Kathy

quote:

---

Originally posted by kk:
Is there a fact sheet or something that is available that I could share with all family members explaining the process, stages, etc., that our Mother will go through....Please, please help me find somthing like a fact sheet that will provide guidelines/stages on what is going on with Mother emotionally, physically, mentally, and anything else you might be able to send my way.

---

KK:

Here's the link directly to the Alzheimer's Association Fact Sheet on the Stages of AD:
http://www.alz.org/ResourceCenter/FactSheets/FSstages.pdf. It's comprehensive but readable.

Another Alz Assn brochure available to read online is "Steps to Caring for a Person with Late-Stage Alzheimer's Disease: Responding to the Indivdual's Increasing Needs." Here's the link: http://www.alz.org/ResourceCenter/FactSheets/Brochure_LateStageCare.pdf

You could try printing these out for your family, sending them these links (if they have email), or having the Alz Assn send you hard copies - here's the national number: 800-272-3900.

You might also show them sections of the book, "The 36-Hour Day" which also covers this topic and many others.

All the best to you.

[This message was edited by Cathy Dodd on April 21, 2003 at 10:22 PM.]

[This message was edited by Cathy Dodd on April 21, 2003 at 10:23 PM.]

Hi KK

Welcome to the forum. Contant the Alzheimer's Association and hospice to get help and information on how to deal with family members that don't understand what is happening with your MIL.

Also, take a look at this article on the stages of Alzheimer's disease. Stages

Let us know if this helped you and what other questions you may have.

Vicki

Sugarlips

You may want to contact the Hospice in your area. they will not only be able to help you with information but may be able to assist some in her care.

Edyth Ann aka Bubblehead aka Queen Bubble
AOL IM EdythAnn12
edythann@netzero.net

[This message was edited by Edyth Ann on April 21, 2003 at 07:12 PM.]