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wendy, do not feel that patients are 'relegated' to hospice to die. my mother is 92 and has been on hospice twice. this is a mind reliever for me. my mom has been on hospice twice. she is in a nursing home and they come there. hospice has been described to me as extra care for the living for a much better quality of life that harried nursing home workers can not give. I feel all the emotions that are stated in this blog. right now I am kind of in a negative mood. my sister from out of town visited and my mom acted like it was the second coming, if you know what I mean. I have been doing all and more of the things that she says my sister did in her 3 day visit. my sister does not speak to me because of my letting off steam to what I think I about her participation in mom's caregiving. how nice to push this off on other people so easily while enjoying her retirement with a new boyfriend..... so maddening. then my own grown children (30's) tell me I should not feel like this and I should ignore her... no one understands. thanks
to Diane, yes you are right. Your husband is in deprssion. This is also fear, anxious, selfminimiced, he is not the man, he knows. His life is chanced. But he can not believ this. So it is good, he talks with other men, because the man has other words as the woman. So he will be with other man, it is like the mens evening in the earlier time. He can better speak with the other mens, it is a other thing with man to man or woman to man.
So his depression will goes away, and the fear and so on also.
Diane, to find a support group look for Elder care services web site in your county.
I lost my mom this year to Alzheimers Jan 2013.My mom was my heart my best friend.I miss her so.I just would like to say to all of you who care for a loved one with this disease.Give yourself a break.There is no way you will do everything right and that is okay.there are no perfect decisions you do the best you can each day with your heart and do not forget that before this all happened you are still important to your family and friends.If you have to put mom or dad in a home think of it as help that you needed,forget all that guilt life is too short.
My husband is 75 and I am 66. He has AZ Dis..
I think he is depressed at times and also mostly very pleasant. He does not seem to know or worry that he has it. It is a chore to help him with things he used to do alone. He gets lost, cannot drive but screams I am not disabled. I just struggle along and feel lucky to still have him with me. I would like to go to a support group. How do I find one?
It has been six months since I placed my father in a memory unit, after nine years of providing care in his home. As a long distance caregiver, it became increasingly difficult to meet all of his needs due to memory loss from a stroke. My dad is still agitated, angry, depressed, and mad at me. I feel so guilt and depressed that I cannot comfort him. Are there resources for family members who have had to place loved ones in a memory unit and deal with the worry over finances, guilt, and sadness watching a loved one suffer with this disease?
This is a amazing article I found online and thought you all may want to see and maybe repost it.
"Mind sports could help older adults improve cognitive performance and reduce the risk of Alzheimer's (opinion from Michael Ciamarra)"
to MarieB, yes you are right. All the recources we need are living in concentration with our eyes, ears, feeling with our hands, fingers, skin, speaking with our mouth. It is the information for our brain. The information is the input for our brain. With this the brain cells are working, the biochemicals are the keys, are also working and so the connectings all brain cells are also working. When we do nothing, the other people do all the things from the daily life, they take away the information. And so the brain cells go down, and the biochemicals will be not build.You go the way to Alzheimer disease, or Dementia. This is the wrong way. When we are doing ourselves all the thing in the daily life, we can do. So we save our brain. I am a caregiver and a therapist for a long time.
Most caregivers do not want to place their loved one in a nursing home or go onto Medicaid and spend down all their financial resources. Using the hospice benefit is appropriate. We are not cancer patients who have the long hospitalizations and treatments first and then go into hospice with a predictable life expectancy. We are not patients with the need for long term dialysis, and other very expensive interventions provided by Medicare over years. We must start insisting on using existing resources whether it be hospice or homecare to meet the needs of those with dementia and their caregivers. In these resources, the staff needs to be certified on how to communicate, guide and support patient and family through the stages of dementia.
Your words came right when I needed them most. I know I am just having one of those rough days and your message has helped put it all back in perspective. Thanks so much!
I am caring for my husband at home. Fortunately, even though he forgets,he wants to be active every minute. So every day,I have activities for him do. He was a builder for many years, and still does minor repairs and renovations. I assist him when he does the repairs, handing to him the tools he needs, telilng him what we are doing at that particular time. It is a longer process, the day goes on, and night comes, and watching TV at night is the relaxation time for me (when he is finally asleep). Aside from keeping him busy, my husband and I walk almost daily, eat more vegetables,fish and fruits(Mediterranean diet), listen to classical music (his favorite). This takes a full time of caring(aside from doing housework,cooking, attending to financial duties). According to western medicine professionals,there is currently no medication for Alz Dx. The medications available are for some symptoms of Alz Dx,which might have some side effects,which could require more medications that could produce more side effects. It could turn into a cycle of medications. That is my concern if the last option I have (in the future) is putting my husband in a nursing home. The staff have their scheduled work to do everyday, and they would not have time to take patients with Alz Dx for a half-hour walk, to improve the patient's circulation,which would make the memory working less and less. I am 64, my husband is 73,I am also getting older, and at this point,Iam doing what I can.
It seems that although this posting is about caregivers supporting each other, the more pressing issue is that the health system is not supporting caregivers. It breaks my heart to read some of these responses. I am not in the US and would be horrified to learn that my options for a loved one were hospice care - before it is needed - or home care, which the family cannot provide safely. Is there nothing in the US between these two?
My mother (in Canada) is on a short wait list for a complex care facility where she will be able to live out most of her remaining years. Her AD has progressed markedly in the past 5 months so that she is no longer safe being at home. We live about 1.5 hours away by car and cannot be there to care for her during the day. She has care givers coming in 4 times per day, subsidized by our health care system. Hospice care would only be a consideration when she is near death and can no longer be cared for medically in a care home.
It's shocking to hear that some people are relegated to hospice even though they are not at the end of life.
I'd appreciate being enlightened about how this works in your district.
Dani I hope you will contact another Hospice that will help you. What your prior hospice did is quite arbitrary. If you can use the internet you could google the following to have the outline of criteria using the FAST scale and Palliative Performance Scale.
Hospice_elegibility_card__Ross_and_Sanchez_Reilly_2008. In this blog Gary reports of 3 years in hospice. As for my situation my husband was in hospice over 2 years. I will say the nurse and social worker “burned out”, although they only came twice a month. They did not have the skills to assess, advocate, and support for the dementia patient and family. I signed out of hospice. Within two months I accessed another hospice. Fortunately his physician remained in charge until he was transferred to an inpatient hospice, where he died 10 days later. His care was outstanding. The family was treated with respect and supportive care.
I missed the article on "pleasant dementia" but I have been the sole caregiver for my husband of 38 years since his stroke 2 years ago. Recently found out he has had dementia since the late 1980's and I did not recognize the signs of this illness. Just thought he was eccentric! Our journey has been hard as there is not much help locally and the one program he was attending is closing on May16th. His short term memory is lost and he is having an issue with walking at present. He is always sweet and pleasant unless he has to get up early or take a shower. We are hopeful that a new doctor he will see in August,2013 can lead us to more help.
to Kathy, your mom is interessted in the daily life only a little bit It can be, she needs more to drink water or tea. Or the medications are not good in connection together. Your mom is sad, because she don t know the names from the kids. But the kids is a new word, it is our word from our generation. The older words are better for her. In her brain are other connection words. Enough drinking water, tea, and the medications are o. k. the brain is better with blood. The blood takes all the things the brain needs to the brain cells. And so the brain cells are better working. I wrote a book Rediscover Recovery Practical Reference. I am for a long time a caregiver and therapist.
I too try to find the beauty in this disease but sometimes its really, really hard to do. I have cared for my beautiful mother for 10 years now and watched her ravaged by every single stage of this disease. She has recently been kicked off hospice after 1 year because they said she wasn't dying fast enough. She has been bedridden for 6 months and totally dependent for every need for 7 years. They said to call them when she stops eating and they can't believe she has no bedsores. I asked them what my options were to acre for her and the nurse asked me did I believe in God. Yes, I do, but that didn't help.I love my mother very much and consider it an honor to guide her through this. The beauty is she can occasionally smile and she can still hold my hand. I know she is in there and just because the US government and healthcare system considers ALZ patients as "throw aways". I do not. It is the family that take on the burden and remember the beautiful person that their loved one was and still is even if the system fails them miserably.
I watch the birds in my yard and imagine the day when my mother is finally free to fly away to find the peace that she deserves and has earned from Alzheimer's.
Gary, I like the analogy you provided to your children... that they didn't know her when they were infants and your wife held and diapered and loved them... while your wife may not be able to name who they are now, I do believe she knows that they matter to her and can feel that they love her.
What a lovely article....so encouraging! Thank you so much. I love the comment about the 'oneness' of the care receiver and the care giver. How true!
Writings like this help me on this difficult journey. Thanks again!
Thank you for your words of wisdom. Taking care of an alz. patient for 8yrs, now in hospice, has shown me that we are truly not in control of our lives. We can do ourselves a big favor by surrendering to Gods will, and lean on His capable strength. I am definitely not saying this is easy...far from it. But for today, I too will choose to believe that there is a master plan for us all and what better way to live it but in doing the next right thing, and being content in knowing we are doing the best we can. Remember, without God you can do nothing, but with God, all things are possible
Becky...Find another support group. I would be lost without my support group. It's quite a drive, but so worth it because we are all walking in the same shoes...some further along & some not, but we are all there for each other. We compare notes & share laughs. I was a total mess when I first started there but now I look forward to what each day brings w/my sweet husband of 50 plus years. He can be impatient & he can be loving & he can be totally confused but he still can make me laugh. Driving him home from the V.A. last week, he saw a sign "50% off clothing" so he quietly mumbled "this dress has only one arm"...cracked me up!!
My mother was diagnosed with Alzheimer's 9 years ago. She will be 89 in June, and definitely is experiencing "pleasant dementia," as you called it. She has no cares, reads and listens to music all day every day, and although she is at times grumpy (when asked to take a walk or shower for example) for the most part is very content. I loved your article talking about this manifestation of Alzheimer's. It is a thread of hope in the midst of a disease that robs so much from families and patients. Also, because so many of my family members have suffered dementia it is a comforting thought that it might be possible to continue to experience peace and joy despite an Alzheimer's diagnosis. Thank you.
thank you for your stories. they give me strength as I try to do the best I can for my Mom. I don't feel alone in this. thank you for letting me cry.
Paola ~ My husband is 72 and I am 64. We have been married 33 yrs.now and have decided, after eight yrs., I can no longer maintain. I am looking for a care facility now and feel that I have done all that I am capable of doing. I am sure there will be repercussions from the family, but they aren't in my shoes...
Paola, I totally agree. Thank you for expressing my thoughts. I recently found a support group but I felt like it was an AA meeting. Not sure what I expected not sure what I got.
Until one has experienced being a caregiver of a loved one with Alz Dx, everybody else is just looking inside from outside. We read what medical professionals tell us to do to make the life of our loved one with Alz Dx as normal and regular as it used to be,so in the process, the carer puts a hold in his/her own life, and puts all his/her efforts into this caregiving, day in and day out. "Pleasant" dementia is pleasant for the loved one with dementia, because he /she is in his own world which the caregiver tries to understand and support. The caregiver's life is changed, because it rotates around the life of the loved one with dementia, that is the reality. The carer learns to adapt and to accept this changed life, and this becomes the routine of the carer' daily living. It is not "pleasant" at all, but the carer has to live with it. The mental, emotional and physical effects on the caregiver cannot be measured nor understood by others who are not in a caregiving role.
Our mom has AD for the past few years and every day forgets more and wants to sleep more- Day Care helps - I tell my kids that the joy they bring to her is for the moment and that is all- the smile on her face when she holds a baby or plays 'go fish' with her great grand boys is so much more than the pain on her face when we tell her she needs to get up for the day - The 'moments' help when all else seems like a struggle!
I think the other side of pain and suffering may be peace and calm. Perhaps there was such a decidedly varied response to "pleasant" dementia was because it sounds just too JOYFUL.
Marie - My wife, in our 50th year - has been diagnosed with AD for a little over 6 years. Much like your husband she has never had a mean spirited response to anything I've done to care for her. I've been fulltime caregiver and hardly a day passes that we don't get out for a drive, church, grocery shopping, etc. Caregiving has shown me how AD works like rolling the clock backwards - adult to infant. Next week will begin her 3rd year in home hospice. I told her Hospice Dr. & Nurse that I was going to get a pin for her to wear and walk her thru the mall - "I SURVIVED HOSPICE" - In reality I know that is not likely for dying is what we were destined to go through from the moment of birth. In fact I may die before she does, but I will care for her as long as possible.
She’s my baby headed for her last breath. I've told the kids(adults)not to feel bad if mom doesn't appear to know you, you didn't know her when she held you in her arms, fed, diapered, and loved you. When it hurts I remind myself that the Bible said we became ONE when we married - then I say, what I'm doing for her I'm doing for me because that is a part of me that is hurt/sick/dying - yes it hurts but it is a blessing to be able to still have her here gripping my arm and occasionally smiling as I type this. She's been like an infant for 2yrs, but she can show love with her smiles. When she finally leaves the room, she won’t come back so I must be prepared to go where she is.
My dad just passed away in November 2012 after battling w/dementia for many years. The last 4+years of dad's life was spent in a nursing home facility. My mother and I both read the book "36 hour day" which was so helpful in the caregiving of my dad. The first few years - dad was very angry, resentful and frustrated with being in a nursing home. The last year he was happy, grinning and accepting of the care he received from the staff at the nursing home. This is such a difficult disease to see a family member go through.
Regarding the 'pleasant dementia' story- I recently lost my husband of 42 years due to early onset Alzheimer's disease. He most definitely was extremely pleasant and this one important characteristic literally got me through the last years of this awful disease. He was happy and content and though unable to talk lor walk or feed himself loved everybody. If you spoke to him he was overjoyed. His care in a Memory Care facility under an excellent Director and lots of family visits and wonderful caretakers certainlly helped. I was so happy to have this particular characteristic he had validated as I tried to tell everyone for a long time how content he was - more so than the rest of us for sure. Thank you so much!
Very beautiful,caring and meaningful . Thank You
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