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Last month, H.S. posted a comment about his father's fear of Alzheimer's, even refusal to use the word, and his concern that his parents are both ignoring a diagnosis.
If using the 'A' word creates an obstacle with your parents, then changing your language may help to open up lines of communication. If you say, "Dad can we talk about your memory loss?" you may get less resistance than saying, "The doctor said you have Alzheimer's disease."
Overall, the goal is not to agree on what to call 'it' but to be pro-active in receiving treatment and planning for the future. That being said, the following are important discussion topics to have with your parents and/or other family members. Keep in mind that you don't need to tackle them all in one conversation.
A common mantra we use in our support groups is "hope for the best, but plan for the worst." One of the most tragic situations I see is when families wait too long to create a plan and consequently find themselves in some sort of catastrophic situation and feeling powerless. To the best of your ability and within the limitations of your situation, H.S., please intervene.
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If there is a local Alzheimers support group in your community, join it. You are not alone!
What a wonderful blog! My husband and I are responsible for his parents who are in their 80s. We have been on a long road (8 - 10 years) as many of you have and have sometimes wondered where "our life" went. "Mom" has a 30 second memory and "Dad" is not in good health. After her heart attack, we talked to her doctor about their situation and he convinced "Dad" that he could not take care of her and he should move somewhere for her care. A catastrophy forced the issue. She moved from rehab directly to assisted living with "Dad". For 2 years they have been in assisted living and we are still doing things for them because they will not let the staff do anything.. but it is easier than having them with us. I get her to change her clothes and clean herself, etc. Here is what I have learned that may help you: Talk to their doctors and make them your ally in talking to them about the life changes they will need to make. Read: The 36 Hour Day - A great book with helpful hints in dealing with those with Alzheimers. Visit assisted living facilities in your community to prepare for that transition. Many charge a monthly rate w/ little down payment. If they or their spouse (even if deceased) served in the military during wartime call the Veterans Adm. office and ask about Aid and Attendence benefits. It has been a godsend for us and you do not have to be penniless to qualify (not like Medicaid). If there is an Alzheimers su
Last year Mom's long struggle with dementia was finally overcome and I am now trying to understand what actually ended her life.
My guess is that small parts of her brain were shutting off which not only effected her memory but also the function of her organs. Do people with dementia die from the loss of their organs ability to continue to perform correctly?
In response to Mardelle's question re:inappropriate clothing choices---I have a minor problem with my 93 year old mother. I have read a suggestion that I will implement soon. Move the clothing to an inconvenient location for the person having the problem. Make available only what the person needs to wear on a daily basis. When you done all you can stop worrying about what others think.
I have a different problem. My mother is getting to that stage where she balks at taking a bath and washing her hair. I do not want to take her out in public if she has offensive odors. Previously, she was a very fastidious person regarding personal hygiene.
Even with these issues I am so thankful for the fact that she still walks, talks, feeds herself, helps me with cooking, ironing and yard work.
My husband and I went through 10 year's of Alzheimer's with his Mom. His Dad tried to keep her home as long as possible but she became like a Houdini with being able to get out of whatever locks he put on the doors. His health was deteriorating when one night she got out in the middle of the night and was found wandering toward a major highway in their area. Being an RN, I noticed some subtle changes going on but the family refused to acknowledge them. Her PMD did not seem to pick up on them either and like other comments I've seen suggested a psychiatrist or neurologist. It took a while to have someone finally decide we were dealing with Alzheimer's and by then Aricept was too late. I know that these drugs have to be started early in the disease to really make a difference. They aren't a cure just a stopgap to allow some time to make decisions and get affairs in order. The National Institute of Health has funded some great studies by the National Institute on Aging and Harvard about the progression of Alzheimer's and that is should be treated as a terminal illness much like cancer. This is not something that can be cured but acknowledging the diagnosis and planning for what will come does help everyone deal better with the situation. The brain is going backward through the stages of development losing what it learns last (in our teens) first and going backward from there. If you can look at it in that way some of the behaviors begin to make some sense.
What do you do with inappropriate dressing - my husband insists on several layers of clothing topped by a jacket one would wear in the winter! Have tried every polite means, but am embarrased that people will think it is my fault.
Ann, I STRONGLY second what Lucy wrote about going to see another doctor. Our PCP saw early signs of AD as I did, but he deferred to the neurologist we went to see. The neurologist diagnosed her memory problems first as being due to stress, then anxiety, then depression. When she continued to decline after 2 months on an antidepressant, he sent us to meet weekly with a 'cognitive psychologist' expecting her to see immediate improvement in 6 weeks. After 10 weeks, and my wife's continued decline, I was FINALLY able to convince her to see another doctor for a second opinion. This time we went to someone who specializes in memory disorders and the first thing he said was my wife was NOT depressed, to stop taking the antidepressant, and then further testing resulted in an AD diagnosis. So, Lucy ... get your husband to a doctor who specializes in AD or memory disorders ... and tell the doctor to explain to your husband exactly what is happening and what needs to be done!!
Ann, Yes my husband was, and still is aware of his cognitive issues so it was much easier for me to get help for him. Do you have family members or friends who have noticed his decline? Perhaps they could be helpful in convincing him that he needs to have an evaluation. Perhaps if you tell your doctor about your husband's family history and how his problems are affecting you, he/she will finally listen and give you both the help that you need. It's a lonely road, especially when no one seems to notice that you are on it! It might be necessary for you to see another doctor who will be willing to listen to your concerns and take action. Your husband's problems sound similar to the ones my husband was experiencing before he began taking medication. The right meds can make a tremendous difference so keep trying! I truly sympathize and wish that I could be of more help.
I was also not impressed with excepts of "The Myth" book that I read online, along with the good doctor's philosophy. I agree with Coleen that it is difficult enough to accept the diagnosis that a loved one has AD ... to accept that AD is a degenerative disease, that there is no current cure, and that the only real question is how much quality time you will continue to have with your loved one. Sure there are meds available, but at best they will only slow down the decline by a matter of months ... if at all. While that is a wonderful outcome for those helped by these meds, NO current treatments will 'cure' AD. So, the sooner one accepts that this is a disease that leads to death and has no cure, the sooner one will take whatever critical steps ... emotional, supportive, financial, medical, whatever ... that are necessary to deal with that new reality. I also think these responses show how much of a need is 'out there' for people suddenly dealing with an AD diagnosis and why I strongly urged in a previous blog that The Alzheimer's Association develop many more support groups for those in early stages ... and work more closely with doctors to refer patients and their spouses/caretakers to such support groups. It is precisely in these support groups ... currently few and far between ... in which spouses/caregivers can meet others who are dealing with and have recently dealt with precisely those same issues and can really offer help and guidance at the local leve
I for one was not impressed with the suggestion made by Garnet for all to read Dr. Whitehouse's book on the "Myth" of AD! The ideas in the book sends those of us dealing with our loved ones down a dead end road with no hope whatsoever! Anyone else with ideas on the subject?
Lucy, thanks for your comments.
Was your husband aware of his diminishing cognitive skills? One of my difficulties is that my husband tends toward anger and denial when I do speak of it.
His problem is worsened by fatigue, stress, hunger, a change in routine. When he's within his "comfort zone", he does much better.
There's a family history of what was once called "old age dementia" which adds to my concerns.
Once again thanks for your advice and encouragement.
Ann, I had the same concerns about my husband's cognitive issues. Our PCP was mildly concerned but encouraged us to wait and see. I was not comfortable with this approach so I had my husband evaluated by an outside counseling agency. After examining my husband the therapist called our PCP and expressed his concerns. At our next appointment our PCP was more than willing to make referrals to other departments. My husband has been diagnosed with Alz but he has an excellent medical team tracking his disease and monitoring his medications, so keep trying! There are many caring professionals out there who are willing to help. It won't hurt to express your concerns once again to your PCP, but don't be afraid to pursue other options if necessary. Best wishes for a successful outcome.
I'm concerned about my husband's cognitive skills but don't know how to address the subject with him.
I've asked for assistance from his PCP but he seems unconcerned.
What, where and how should I address this issue of great concern.
Should I, once again, request help from his PCP?
I'm desperate for direction as I fear it's effecting my physical and mental health which is not beneficial to my husband.
My second wife of 20 years began showing signs of memory loss about 4 years ago. An EEG by neurologist shows abnormality and Alz characteristics. I have one main woman who is excellent who assists me in caregiving and she has two who assist her. My hope is that my funds will be sufficient to keep her at home with these caregivers and me. I try to take the night shift but have to call upon my main assistant when she does not sleep, who will come at any hour of the night I call her. My wife's sleeplessness seems to be growing more and often will last for two days and nights before she crashes for a day and half of sleep. During some of these night hours I am amazed at her ability to tell me what bothers her about my being at my office until late (5 PM) and no longer loving her. I am at the office, but my love for her is so deep in my heart and my brain. I am going to try to do something about exposing her to activity outside of our home through understanding friends and support groups, beyond what our main lady caregiver can do. Not sure that will help with this sleep problem which I have to be careful does not drag me down. We are both 80. Allan's comments are excellent and as I read those of most of the others my heart goes out to you for most of you have more than one loved one for which you must care and many with additional health problems besides Alz. I do not think I have planned ahead enough regarding the lack of sleep and I hope that a good doctor will assist me.
We've been watching my mom's gradual decline with Alzheimers for several years. She's in her 80s and has very little short term memory, and large gaps in her long term memory. Her cognitive skills have declined significantly. My dad was her primary caregiver, and now he has had a stroke and is experiencing some other kind of dementia. He is agressive and difficult, lucid one moment and irrational the next. He's in a snf attempting rehab. My sibs are doing their part, but we are all stressed and at wits end trying to cope with caring for mom and dad. We're going to try an elder care situation for mom, and have her alternate staying between two of us to ease some of the responsibilities of care giving. She is on a waiting list for a memory care facility. We're worried that dad will be difficult to place because of his behavior. I don't think there is any way to prepare yourself for how difficult and stressful this is. I know we're not alone in this, but I do feel so isolated, and want my life back. I know my siblings feel the same way. It's been so disruptive to all of our lives. I want to exercise, I want to read a book, I want to see my friends, I want to stop crying myself to sleep every night.
Dear Carol - when my father had colon CA,
surgery,the chemo,the meds: that caused more sickness & weakness - throughout it all, not ANY HELP from siblings. I got stuck with it all! They came for one visit in the very beginning & then again on the day he died. What YOU need is help dealing with what is battering YOU day after day. Your parents are no longer able to be looked at like parents. Your father is obviously regressing into very childish behaviors. His abusive manner of treating you is, as if he's saying; "I DON'T APPRECIATE ALL THAT YOU'RE DOING FOR ME"! So, stop doing it. I am only just turning 60 yet & I'm in the same condition as your mom. It's frightening/distressing for sure but NO disease makes abusive behavior acceptable OR understandable-okay!
After Dad died, I let my family know,when it came to mom's care, do NOT come to me for help. My poor mom died alone in a nursing home. If you know a person (like a real estate person?) to turn over his properties to; by all means, turn it ALL over to them! Get power of attorney for both of your parents,if possible.Get rid of the bossy caregiver who thinks she can abuse you, since your Dad does. Get yourself a new caregiver for them & just lay down the law! Basic, simple ground rules about what you expect from them. The MD makes medical decisions - certainly NOT a home health LPN. Tell her "this is what I want from you - PERIOD! DO take care of yourself
I told our Bishop (we're LDS) and others who might give us assignments that we couldn't handle. I told people who came to our house regularly and our immediate neighbors--we're all very close. I told our immediate relatives. To the ones who "didn't agree" as they put it, I said, "Never mind; don't worry about it; we have a good life." I learned that even some of my daughters didn't want to talk about it so I read the blogs and made a comment once in awhile and am enjoying my new husband. In some ways our life is better than it ever was. I am enjoying it while I can and dealing with the constant changes. I immediately got our legal affairs in order. In answer to, how do you know whom you are dealing with, you just have to listen to him. Unfortunately, sometimes he will be more alert and cognizant and other times he will be less so. If you have expected too much, you have to remind yourself and change your approach--constantly watching, listening and changing. Fun!
The individuals leaving comments offer important insights into this problem. I am old enough to remember when you could not say "CANCER". Very distinctly I remember cancer being referred to as "the Big 'C'. I have difficulty letting people know that my wife in in the early stages of Alzheimers, however, I have always wanted to face situations directly. Would we all be better served if admitted the problem and dealt with Alzheimers as the terrible disease that it is?
Is it better to let friends know directly or is it better allow the afflicted individual to make enough mistakes and errors so that your friends leave and talk on their way home about the situation.
"Do you think he is in denial?" "Is he not aware of this?"
The question is, who, how and when should people be made aware that Alzheimers is here, here to stay and will only get worse.
Our parents both have health issues. Dad has had multiple strokes, can't see very well, and is having some memory loss. Our Mom has hardly any short term memory. She can't remember what she ate, has to be prompted to fix food, sleeps a lot, has no social stimulation except for the caregiver we hired last fall 4 hours each day, five days a week. Neither one can drive safely any more, both had accidents, so we took the keys, and they live out in the country, and refuse our suggestions to move to assisted living. Now, the caregiver is starting to get bossy with us, wants to put them on supplements, etc. and she is not a professional. The reason we hired her is that my brother and I were getting worn out with the two of them, we need lives, too. My sister is coming here from out of state in a couple of weeks and we are going to try to coax them into assisted living. If anyone has any suggestions in here, we would appreciate it. I have told my brother and sister that I am done filling meds as of Oct. 1st. Dad yells at us and uses profane language and always has to my sister and I and I can't handle it any more. He has always been mentally abusive to Mom and to my sister and I, and I am really done with it. Can't do another winter. They have acreage to care for, rentals they can't handle, and we have a real mess on our hands. Thanks!
Sufre de una Mimadre DESDE Tres Años en solitario hace Dios SABE Lo Que sufrimimos al Verla Cada Día IRSE, Creo Que es de las peores Enfermedades Que existe en "la vida, ojala encuentren rapido Una cura
QUE DIOS NOS AYUDE EL SEÑOR A TODOS A ESTA HORRIBLE Y SOPORTAR Entender ENFERMEDAD
Without further ado may I suggest all read the recently published book " The Myth of Alzheimer's, by Peter J. Whitehouse, M.D., Ph.D.
My wife is one of those below 65 who has Alzheimer's. This is her 7th year after being diagnosed of having the disease but the symptoms of memory loss was noticed 3 years earlier. I knew nothing about Alzheimer's than. I agree with your suggestion that the word "A" should not be used as I was also in denial when I was told by the doctor about the disease. I could not even accept the advice of a Caregiver Counsellor about my role as a caregiver. Even today I find it very difficult to tell my friends that my wife has Alz disease. The word 'disease' is frighthening. I hope one day this word will be left out.
Re: "Begin to explore options for long-term care and memory care."
This is very good and sensible advice, but many people who are caring for a family member with Alzheimer's (my dad) for the first time (my mom and I), don't even know where to start. The bullet points you provided would be a little more helpful if they included examples of such care, such as: "long-term care, e.g. nursing homes, other?" and "memory care, e.g. ???) and perhaps suggestions as to where to start the search online and / or in one's own community.
I find the Alzheimer's Caregiving Newsletter very helpful. Keep up the good work.
My Mom has now been in an ALF for Alzheimers for 2 1/2 years. She had fallen at home several times and during her last fall broke her left hip and wound up in a rehab facility where the social worker and doctor told us she had Alzheimers and that she could not be sent home without constant care. We admitted her to the ALF and even there within six months broke her right hip during a dancing activity. Even there after another year and a half with "constant" custodial care she hit her head and had nine staples put in her skull.
Even now she doesn't seem to know from week to week (we visit twice a week now), how long she has been there. It's very disheartening to watch your loved one lose her daily memory.
We visit just a few minutes after lunch and she cannot remember what she ate...so sad...
We still let her hope that she will eventually be going home, however we have sold her car and furniture and her home sits empty.
We wish there was a cure, but for now she is taking Aricept and Namenda and she still is aware of who wer are and we joke and bring up the "old memories" which are still there.
It is a horrible thing to watch your Mother deteriorate like this, but what can we do?
I pray every day that my guilt will be taken away for having to put her there, however she now has people and activities around her that she never had before living as a widow for nineteen years since my dad's death.
Please pray that we don't get it ourselv
Its great advice given here,,to prepare,,but for so very many,,its simply not feesible. If a person is in denial,,and has never had a will or trust,,its very difficult to do too much. Plus its the family that takes care of the LO with AD,,,finances simply aren't there to provide placement. NH's are understaffed and poorly trained and equipped to give the tender care and strong shoulder needed for many people that need the placement.
I was more fortunate in the aspect my Mother did update her trust before she was ever diagnosed with AD,,,but since I'm an only child,,,her care and needs feel on me.
I had to actually go to court and get legal guardianship in order to place her into ALF,,use her money to pay for her needs,,,since my husband and I certainly don't have and didn't have the finances to do so.
Not only does AD need to be addressed in all of its many aspects ,,,but for those that have no financial money,,or those that can no longer provide 24/7 care for their afflicted LO,,thats where all states,,cities and government need to step up to the plate to provide good care for free,,or for a minimum cost.
I am into the 4 th year az with my husband and 4 strokes, I find myself at a total loss trying to figure out who I am talking to and who he is from day to day.
No one can give me answers as to determine which is being active in his brain as the day goes by. I am told he has a great deal of scar tissue in his brain and now we are getting occasional seizures.
I am told to let him live from day to day as yesterday is gone and tomorrow may not come.
His health is very good over all and he is up in his chair as much as possible. He has completely ceased walking. Do you have any suggestions how I can determine what or who I am working with?
Thanks so much for the excellent advice, Angela. To update you : at my request, my dad's neurologist did tell him he had "a little touch of Alzheimer's" at his last appointment. First, Dad reacted with "Nooooo!", putting his head on the doc's shoulder. Then, almost immediately, he straightened up and declared he would fight this thing. (Attaboy, Dad!) Both he and my mom have since quietly resigned to the diagnosis. Thankfully, they had already taken care of the legal matters. Our whole family is working together, and my mom has agreed to go to a AZ support group with me. I thank God for resources like this blog, because its all so very new to us. Keep up the good work!
I knew something was wrong with my Dad but my Mom refused to talk about it. When she died suddenly I rushed my Dad to a lawyer for a POA, Health Directive POA, and to finally have a will written leaving everything to hie 15 grand kids. It took about a month to get it done. The Lawyer had closely questioned my Dad the first time to make sure this was what he wanted. With in less then 3 months he suffered a small stroke and was diaganosed with vascular and Alzheimer's dementia. He had become very confused and had to have round the clock care. My siblings that lived close were not willing to step forward and the ones who wanted to help lived hundreds of miles away. They all have an opinion of what I should be doing. My concern is that I keep my Father's best interest first. With out having the legal work done I would not be able to do that.
Hope for the best while planning for the worst is good advice to caregivers. I'd also offer some advice given to me the first time I attended a support group meeting for spouses of those with early stage AD: "Enjoy today because it will be better than tomorrow. But be sure to enjoy tomorrow because it will be better than the next day." My wife and I now try much harder to enjoy each day as it comes because, while we hope for the best, we know that the worst is coming. So any caregiver who wants to do something special with their loved one diagnosed with AD ... take that one last trip, for example ... should do it now, or as soon as possible, because next year may be too late.
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