Dad was diagonsed 2 days before Christmas with early to moderate alzheimers. His dr. put him on Aricept telling my brother and I that the medicine would hopefully slow the progression to the point it would seem the disease had stopped all together. Unfortunately we have not seen the progression slow down that much (Dad is being retested in a few weeks). Since Dad was diagnosed my brother deals with Dad's disease by not dealing with it. The caregivers have told me I have become Dad's "security blanket". Eventhough we are lucky to be able to have caregivers around the clock I still take care of all of his finances, take him grocery shopping, pick up his medicine and a number of other responsibilities. I have an 11 year old daughter my Dad has always had the pleasure of spoiling. My brother's two children (1 married with 2 children and 1 just graduated from high school) very rarely go over to see Dad. My brother goes over on Saturday or Sunday only and calls maybe once a week. I am torn on how much time I should be spending with Dad and trying to balance my job (I am a high school teacher), my home, my daughter, my husband and keep my sanity. I have seen my Dad go through several personality changes since Dec. 2009 and it is scary. Sometimes I feel as if I just can't go on taking care of everything I am having to do. The caregivers do as much as possible for me and are wonderful with Dad. I just don't know where to turn for a shoulder to cry on sometimes. I feel I have to be the strong one to get my family and my brother and his family through this disease that is slowly taking our Dad away. My husband has been very supportive of all that I do for Dad and I would feel as if I had failed someone if I were to go to him every time I felt overwhelmed. Where do people turn when they just need someone to listen and help with suggestions on what to do and where to turn. I apologize if I am not making sense. I am still trying to make sense of this disease.
- Introduction
- Diagnosis
- Treatment
- Prevention
-
Caregiving
- Coping with Emotional Changes
- Coping with Memory Loss
- Costs and Insurance
- Creating a Daily Routine
- Exercise
- Health and Wellbeing of the Caregiver
- Home Safety Adjustments
- Mental Exercises
- Respite Care
- Talking to Children about Alzheimer's
- Talking to Friends about Alzheimer's
- Telling Someone They Have Alzheimer's
- Transition to Assisted Living
- Transition to Nursing Home
- Work
- Related Conditions
- Resources
Q: Where do I turn for help for me to deal with my Dad's Alzheimers?
Carleta
You are making a lot of sense!. I understand just how difficult it is to organise everything, keep everyone happy by giving them time, attention, coping with the general stresses and strains when you cannot meet their expectations. On top of that you have a full time job with all its demands. It is not suprising you are finding it difficult.
Caregiving is so often the role taken on by women. Brothers/fathers/sons often do not see themselves in that role and do retreat if they think someone is doing the caring effectively. It is also always difficult to ask, expect, other members of the family not directly related (blood relatives) to invest the same ammount of time and love.
I think you should do a number of things to maintain your 'sanity'. First, talk to your brother and tell him about how you feel. He may find a supporting role easier than you think. He may also be able to offer help if you ask him to do specific things. People sometimes need to be given heavy prompts and help to see what needs to be done.
Second, contact your local Alzheimer's Association. They are active in most ares and provide support groups and can provide help and suggestions. Here is a link to find out your local chapter of the Alzheimer's Association. The community here on OurAlzheimer's are always here for you too.
Contact your family doctor he may be able to tell you about support groups or individuals able to provide you with the emotional support you need.
It may be that you need to think about cutting your teaching hours if you want to continue to be happy with all the roles you want to do.
What do you think?
All my best wishes
Christine
Hi Carleta,
Christine has given you an excellent answer - about making sense with what you are doing. The disease itself doesn't make sense - as I mentioned in the email, it robs the patient and the family of a beloved person's ability to be him or herself. But your questions are very orderly and make total sense.
Christine mentioned the Alzheimer's organization in your local area for support, which is very important. Also, if you go to your state's Web site, you will find your state's version of the National Family Caregiver Support Program. They can give you a lot of support.
As mentioned earlier, your sibling issues are sad but common. Most frequently, one person carries the largest load, and that isn't always the person who lives nearest to the elder. We've covered many sibling topics on the site, so if you search the site with "siblings", you'll find a variety of articles and conversation threads that should help you know you have lots of company.
Finding support in person and online is important for you, so please do follow through on the suggestions that appeal to you.
Take care,
Carol
Hi Carleta -
Life long I've been in the habit of simply saying, 'No fun' when something is as mentally and emotionally devastating as that which Alzheimer's brings forth. It's only a couple of words which can be interpreted as lightly rather than deeply felt compassion, but from the bottom of my heart I, as well as countless others, put our emotional arms around you to cry with and to comfort you.
As I began caring for my Mother over four years, I too found a great deal of general educational help available, but few sites or people who could help me work through specific issues. Thankfully, I began writing down various things and constant review helped me develop my own caregiving 'system'... which constantly changes due to the mental, physical and emotional digression of Mom.
By the way, I also not only couldn't receive physical help from my brother and sister, (but wonderful excuses) I also still have considerable trouble even acquiring emotional support from my brother and sister. (Four plus years worth) As you well know, that is also no fun. Yet, understanding that great numbers of other people are in the same boat, I have found it helpful to others when I employ my own sibling taught education regarding sibling assistance for the purpose of perhaps helping others as they begin their own travels with an Alzheimer's victim. Various pages on my site address such issues. (See below)
I CAUTION YOU: Though by nature I am a very caring, sensitive male (all male) who might even cry while watching a movie... I am also one who does not necessarily soften that which I write or speak. I sometimes quite strongly lay that which I perceive to be reality directly on the line and let the chips fall where they may. Some responses to pages on which I speak so frankly are in the eyes of many, understandably unfavorable, but most are indeed favorable. The problem nearly everyone has is how to get their siblings to read these specific articles without further alienating them. You may wish to read a few pages on that topic. Rather than asking your siblings to read such and such, perhaps it'll help you identify particular subjects you might speak personally to your siblings about. Unfortunately, my siblings aren't those who will reasonably discuss things of this nature. Thus, the inclusion of these pages.
My very best to you in your endeavors of love, Carleta !!! Know very well that you have great numbers of wonderful, caring people who are encouraging you.
V
There is an article I read recently “Art is seeing the light: Bypassing limitations & supporting the strengths of those with Alzheimer’s”, which lists some inspiring resources. One of the resources is a documentary film “I Remember Better When I Paint” which we recently got on DVD on amazon. The film shows how the arts are helping open doors of communications and quality of life. The caregivers featured in the film inspired us.
-S.D.
Hi Carleta,
The other thing you can try is to get respite care. Sounds like you are doing everything for your Dad but not you. You need to have a break at times. Try respite care or assisted living home for dementia for your Dad. If you have support of the home or respite care, you can relax for a while to find yourself or keep a distance from this for a while to renew yourself. This is good for everyone involved.
Take care,
Nina
Hi, Carleta,
I think that others have given you very good advice. I would tell you that I had to be pretty direct with my brother (who lives in another state) about what I needed him to do to help. For instance, I asked him to come in to handle Mom's move to another room at the nursing home since I had to be out of town. Although my brother would never have intuited what was needed, my requests were always taken seriously and he almost always accomplished what I asked. Therefore, by being specific and giving your brother specific "tasks" to do on a regular basis can be helpful.
I also made a point of keeping my brother in the loop when I went to meetings about Mom's condition at the nursing home and after doctor's appointments.
I also encourage you to take time for yourself so you don't burn out. You have a lot on your plate, so be sure to put yourself on your list of "to dos". And see if there's an Alzheimer's support group in your area - they can be of help. I'd also recommend that you pick up the book, "The 36-Hour Day" by Nancy Mace and Peter Rabins. That book was my guidebook in understanding what was going on with Mom's Alzheimer's and helped me anticipate what might happen next.
Take care and stay in touch!
Dorian
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You have given me a lot to think about and work on. My brother is one of those who does need the "heavy" prompting.
If it were not for my sister-in-law I doubt he would even attempt to go and visit dad or even call occassionally. When my dad has to be retested on the 17th I will have the opportunity to go to the resource center at the clinic he goes to and get information on support groups. Thank you for this information.
Carleta