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Alzheimer's blog
With Mayo Clinic health education outreach coordinator Angela Lunde
Family members share coping strategies, experiences
I have poured over each and every response to my last entry on dementia and family relationships. My heart goes out to each of you struggling right now.
Many of you wrote of the conflict, pain, sadness, and resentment occurring within your families. Thank you for your honesty and candor. I have to believe that many who read these words will find some comfort in knowing that they are not alone. I know you are doing the best you can with the situation you have been presented with.
Others of you wrote that you have come to a place of acceptance and peace on this journey and within your family relationships. Here are some of the ways a few of you have coped that I feel are worth repeating:
- "... we do what we can to help our father and mother while not keeping tabs on who's doing what or who's not doing their share."
- "I was finally able to get over my guilt of having to place him for his own safety and 24/7 care. I am now taking better care of myself."
- "I have found that having a therapist has helped me deal with my sadness while I try to be the best caregiver I can be."
- "You can't be bothered with what others will not do."
- "For me, my mom was my best friend, and I gladly took care of her. I loved her, and miss her to this day. Her Alzheimer's was the best of times, the worst of times. The toughest thing I ever did, but the most satisfying. Miss you, mom."
- "What about some respite help, some companion help? These are things, small things yes but would enable an outlet for a short time. And please joint a Support Group. Find someone to stay with your loved one so you can attend. You DO owe it to yourself."
On that note, I ran across a letter I received from a woman in my support group. She was a caregiver for her mother and experienced a strained family relationship. She wrote:
"Unless you have a loved one who suffers from some form of dementia, you will never know the suffering that transfers to the entire family and mostly to the caregivers. The suffering is life altering. However, the suffering is manageable when you find out you are not in this alone. Even though I could not keep my own family at peace, I became a part of another family — a wonderful, loving, compassionate, and supportive family. This family (my support group) gathers monthly to give each other the courage, strength and support to go on for another day. We learn how to break down difficult times to manageable moments. Right now, they are my closest family, we share an incredible bond."
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My husband and I live in a Continuing Care Retirement Community. There was an important nitch missing in the care available to couples in Independent Living Units. Those who have spouses with mild to intermediate Alzheimers have no help except paying $20.00 a hour for an agency worker. We want to keep our husbands/wives with us for as long as possible before placing them in the Alzheimer's wing. Three of us have formed a Support Group in which seventeen registered. We are starting a Pilot Club for the Memory Impared spouses to meet once a week so that the caregivers can have a day off. The Support Groups (we divided into two) meet twice a month and so far have proved to be very beneficial to all. The Pilot Club will start soon and required a lot of work with the administration. State and Federal liability laws are very prohibitive and limit what the retirement community can provide. Yes, caregiving is tough, and having friends to talk with about out mutual problems and experiences is important to me. Thank you for giving us this information chat outlet.
Re: relationships. My daughter was in total denial for 3-1/2 years. The change in my handwriting finally brought her to reality. My sons still think of their mom as "super mom." My husband was in denial for 2 years. He is my main caregiver and Home Health Care comes to our house once a week. Sadly, I was the first one to recognize my brain was not working properly. Forced to retire early.
Four different doctors and four different diagnoses along with several MRIs of the brain has changed the doctors opinions. My choice is to rely upon the Lord. He said, "I will be with you always," and I believe Him!
Marie and Tempest, The solution about the VA is that you need to write to the Director of the VA in your home state and have your doctor outline your loved ones' problem. At the rate the waiting list is growing, your loved ones will have expired before they get into a VA nursing facility. Have you thought about asking for Hospice in home care? If your loved ones are entitled to VA care, chances are that the VA will pay for it. I have also seen the financial matter handled by checking state laws to see if the other family members can be charged for your nursing services. Having the option to pay or take the responsibility for an ageing parent on a rotating basis may help them ante up to their responsibilities. When the lawyers comes round, they will be loving and doting children. But when illness strikes too often some children get the idea that "its not my problem" when it is everyone's problem. Marie, try it and you may be surprised at the response. Also, what does your state say about responsibility to the elderly by their children? You also might want to check the ELDERCARE laws in your state. Bunny
Tempest,
I am guessing that either their is no insurance or insurance wont pay??? My mom and I are in a similiar situation taking care of my dad, but I guess at least there is two of us. He has end stage alzheimers and is also bedridden. He has also lost all of his hearing so he just yells all of the time unless he can see us. We are trying to get him into the VA hospital because he is a WWII vetran, but the waiting list was huge. We were able to get a $500 voucher from the Vetrans association. Basically it pays for someone to come over once a week for 2 hours to give dad a bath. My mom has been hesitant to ask her church for help, but I suggested that instead of asking a specific person to help if she just wrote a letter to the church or put a posting on the bulletin board. Sometimes your church family seems to care more about helping than your "real" family. I have 4 brothers that refuse to help and like your family don't even call. Is is sad that their priorities are elsewhere.
My Twin sister was diagnosed with early onset of alzhiemer's. What is the chances of me having this as well. We are all concerned for her. And trying to support her.
I was reading your comments posted and it seems that no one is in the situation I am dealing with now. My mom has dementia, blind, bedridden and tube feeding. My oproblem is I work full time, married and caregiver for my mom. I've been taking care of her fully since her stroke 5 years ago. I get no help from anyone in my family, occasional visits and hardly any phone calls at all. I am so exhausted, mind and body, it is so stressful. I have not had a day off in 5 years, my morings start at 5:00 a.m. and sometimes I do not get to bed until midnight. She constantly calls me during the night at least 6 days out of the week. I thank God for my husband who supports me and helps when he can, other than that I have a huge problem with my siblings, they do not help out in any way, they say they do not like seeing her that way. To me that is a cop-out, I've had surgeries where I still had to take care of her even during my recuperation. I love my mom dearyly that is why I am taking care of her now, but sometimes I feel like everyone has decided I am obligated and they are not, and on top of all this I just lost a brother and it seems to be coming down on me strong and with a vengeance. Thank you for allowing me to vent, it seems whenever I do I get the comments God will bless you, He will renew your strength, and beleive me He is daily, nevertheless my mind, spirit and body is stressed and tired. Any comments or suggestions?
Support groups are good but sometimes caregivers need respite. I finally found help for me and my Dad through the Agency for Aging in our area. They are providing an attendant for 10 hrs a week for three months for Dad plus building a ramp at the front door. Dad is 86 with ALZ and is doing fairly good on Aricept. He was grouchy and angry for a while and it was hard but after seeing a councelor and reading Take my Dad..please, I have learned how to headoff major meltdowns for him and me. It is a longroad but worth it.
To Allison,
Go to a support group and see if you can get assistance with your Mom being diagnosed? Sun City, AZ probably has a ALZ support group, that could give you a lot of advise.
USF, in Tampa, is a major research hospital for ALZ. Check out the information that they have available.
You can take your Mom out for icecream and "drop" by to see the doctor. There is a quick test that determines the possibility of ALZ. Once, you get an MRI of the brain, you will have the truth.
It took over six years of my trying just to get my Mom to see a doctor. In the meantime, I went to meetings. I determined that she probably was a victim. Then, I had to get her to see a doctor.
Of course, she fought me. Tried to jump out of the car. Screamed at me. Hit me....been through it all!
Some days the visits are good and sometimes, to hectic to cope with. I never know what I am facing. I sometimes, just go to her room, when she is out eating. Then, I clean up. Wash dirty clothes, etc.
Other times, I visit with her being available. Sometimes, she will go out for icecream. My major problem now is that I do not have the funds to take care of all of her needs.
After a day with Mom yesterday, I come away totally drained. The fact that as Mom is out in the public, and displays her issues because of dementia, those around her have no clue as to what is going on. They have lived such sheltered lives.
They may "hear" of ALZ/dementia, but until they are literally in the throes of dealing with it, they are clueless. I get looks of sorrow. I get smiles. Sometmes, people are considerate. Other times, they just do not know how to handle the situation of a person with anger issues or short-term memory loss.
The public needs to be educated, now. As they face more and more people being affected sooner. You can feel so isolated in your world of dealing with someone else's pain. That you become too tired, to care about yourself.....all that you want to do is find a quiet room.
Does anyone know of Aricept causing headaches for over 2 weeks? My mom just started on this and I was wondering if the headaches are part of her body getting adjusted to the new drug.
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