How to handle the time when you first get a diagnosis of dementia or another life changing situation..by francy Dickinson
Dear Francy: My dad just got a diagnosis of dementia and my mom has just found out she has cancer. I know they are both depressed and upset…what should I do now?
First its the shock. No matter what your age or how long you have felt out of sorts…when a doctor looks at you and tells you, your body is not functioning — it is a big change to your life. There will be depression, sadness and worry…there is no getting over that…but how you deal with it all, is the key.
Mental processes have to follow through with it all and talking it out to a few friends, family or a faith adviser is really the best start. Then its time to roll up your sleeves and find out what all this means.
Here is your list:
Actively talk about the diagnosis and let the senior feel the pain, worry and fear. They have to accept and process through it. After that time has passed and they can get out their feelings progress onward. Its always OK to be sad, its just as important to try to end the conversation with an up tone.
To heal, or to live on with tough medical news the mind needs to know what that diagnosis means. No matter if the age is 6 or 86 the person needs to understand the name of the diagnosis and be able to visualize what it is. So, you need to go online and read about it…find out the main points and bring those points down to understandable language. The idea that you can “save” a person from the stress of knowing a serious life condition is long gone…now we face truth and work through it.
Talk about the options that are now on the table. If the doctor has not done this…you can make another appointment for a consultation or go to the net and find the answers yourself. To know the different procedures, medications, surgeries, or other options is something that makes the problem into a “situation to solve” instead of a “dread to face”.
Get a second diagnosis from a professional in the line of specialty- for the problem. A family doctor can tell you there are dementia problems…but a neurologist will tell you more specific details and explain the process of treatment. The family doctor can say you have cancer but a specialist in that type of cancer can give you ideas for treatment and prognosis. This way…you have a firm understanding of what is really wrong. When this is done the mind will be calmer…knowing is very important.
Record doctor appointments on your cell or with a little recorder. Many times we are tired or nervous and we forget what the doctor has said. Tell the doctor you want to share the information with your family and get it down on tape. This way you do not forget or over emotionalize the consultations. Some times the mind will zero in on one word and the rest of the conversation is lost. This recording keeps you clear of mind.
Always ask what this new condition will do to the other things that the senior already is dealing with in their life. If they have a heart problem and now dementia…does that mean medication changes, treatment changes etc. If they are a smoker, drinker, or even on heavy medications, does that mean a different type of treatment for the problems? If they now have cancer does that mean that their special “diabetes diet and drugs” can continue or is there a conflict with the chemical interactions? The specialist will know these things…and you will find support groups online that will share their journey with you so you can make changes. When you understand all these details…your own mind will be calmer.
Understand that the body has to fight the invaders of what ever diagnosis that has been given. So a sincere re-think of diet and supplements has to be made right away. Keep in mind you have to boost the body’s ability to fight the new problem. So new supplements and new ways of eating and exercising will simply boost the ability to fight the invading problems. This step is not in place of medication…it is in addition to medication that will help the body absorb and heal faster. As everyone ages…we all need a boost of help with quicker healing. To ignore this step is many times to hasten the end of life issues.
Talk and talk again. There are lots of things to talk about. There are business things…home, care, money, investments, insurance, and care giving. It will all be needed in the future. So talking about it right now…gets it out in the open and you can seek help from local services of needed. Do not delay in this important part. A person who is extremely ill or under mental/emotional stress does not make choices well. So do it now.
Talking about end of life issues is always hard to do. To make sure a Health Care Directive is agreed on and understood by the family – will mean you can set that hard part aside and deal with the healing and everyday issues. Find out if the person, wants to extend their life, relax and let things take their course, be tube feed, resuscitated, or in the end – cremated. Once again…this is what you do as soon as you can so the ideas are set, papers signed and then it is put aside and you don’t dwell on it.
Is there something an older person wanted to do before they are really unwell? A bucket list type of thing? Maybe they always wanted to visit a family member or see a special place, or return to their home town. Ask the elder what they had hoped to do and make sure you can try to make arrangements for this to happen or something like it. A brother can come to your town…instead of a big trip to his town…or a place can be seen via the web cams instead of a big car trip. But allowing the senior to dot the i’s and cross the t’s of their life, is very important.
Make sure the family knows about the medical conditions. If a child has not spoken to the parent in years…this is the time to write them a letter to let them know the situation. This way they can make a decision to come and visit and let the hurt and years of upset – lay to rest before the senior is no longer with them. You may not care for the family member…but the senior loves each child and each family member and its not for us to judge.
Take pictures of the senior and make video or audios of the senior and their childhood stories and family knowledge. It helps the senior sort through their life choices and leaves you with a remembrance that is very dear. This is a ritual that will really help the senior in their life journey.
Put together what you will know as the dream team of health care. A good specialty doctor that you can talk to, a nurse practitioner that will help with the everyday things, your senior and you and any other person that will give care. Then make a pact that you will all work together to keep the energy and emotional levels up and support each other through the journey.
If end of life issues are being spoken about…call Hospice…do not wait. Too many families wait and do not get all the benefits that Hospice gives. They will come to you and make an evaluation…if they feel it is not time for them…they will put you on hold and check in with you every month.If it is time, they will assist you in ways that really allow you to be with your family member, not only be the 24 hour care giver.
Hurtful family history should be put aside. Thinking about how to make the senior as strong as possible in their mind, heart, and body is the key. Remove guilt and anger. Try very hard to just be in a settled and joy filled mind set each time you visit the senior. Things that happened years ago…are now gone…today has time for joy.
Medic-alert systems are a must if the senior is starting on a downward journey and living alone. These systems will allow you and the senior to be assured that someone will come to their aid in an emergency.
Since both of your parents may need health care…here is advice on how to deal with partners in care together. Click Here for information if your parents can not care for each other.
I hope this list will be of help…I know that all the things on it have happened to me over and over again…and when you tick them off the list…your mind and heart feel free. I thank you for caring for your senior and I wish you well on the journey…francy
Dear francy: I care for my Aunt. She is 87 and her two children live out of state. News has arrived that her daughter has died unexpectedly and I am wondering how to handle this when she is already so confused?
Thank you for sharing this question, I just had a similar event with a death of a daughter of a dear friend that had lost his wife within the last couple of years. This is always a hard emotional challenge and then you add age and health challenges and you are in a pickle trying to give support.
Here are some tips:
Even if someone is in a coma, I tell them gently about sad news. I remember years ago a couple we knew were in a tragic auto accident and the husband died and wife was gravely wounded. Their son sat next to the mother while she was in a coma and told her that her husband has passed. He did it with such gentle words and asked her to just relax and know he was there by her side. Months later she told him, that she did not remember his words but she did know that her husband had died when she came to and she felt he had been with her as she went in and out of her unconscious state. Giving her the choice to deal with bad news while she was so ill is a scary thing, but keeping real life from someone that is alive is pointless.
Be gentle with words, using a soft but consistent voice and keeping your emotions down is important. Everyone cues off of the person they are with so if you are upset, they will be upset.
Get a picture of the person that has passed and take it with you when you speak of the death. Hold it up for them and let them absorb the feelings or memories that they have of the person. If they are suffering from dementia, take a childhood picture and an adult picture so the elder is able to grasp onto either memory.
If memories are lost, then remind them. Tell them a little story about their life and include the person that passed>Like: “Auntie, when you were young you were married to a nice man and you had two children. One was a daughter Megan and she grew up to be very pretty, smart lady and loved you very much. I am sorry to tell you that your Megan is gone, she died today. She will not be coming to see you again. Do you understand? Do you have a question for me?” Let them express how they feel. They may remember and be upset or not connect at all. It will all flow, but to give them honor you do not hold back news of life.
If they go into a very agitated state, then you want to call the doctor and tell the office what has happened and ask them for assistance. Many times doctors will prescribe just a few pills to help a person get through two or three days of extreme tension while they are processing their grief.
If the person forgets about the death in times to come, that is fine. It is up to you to inform them, not remind them on a daily basis. Maybe their mind can not remember, or maybe they choose not to accept the loss. Both of those things are fine for an elder that is unwell.
Let others in the family know the extent of grief the elder is feeling. They may not express their grief to a visiting friend or relative, but you as there care giver see the grief in their actions and response and you know that things have changed even if they are not expressing that change verbally. So, quietly inform the family or visitor before they engage in conversations.
Many times elders want to talk about their own dealth when there is a passing of a friend or relative. This may upset the family but it is very normal and you need to let them talk it out. That is the key, let the elder set the tone of the conversation and you follow their lead. Guiding them to as much positive thought patterns as you can with your return conversation. Always leaving the conversation on an up note about the future of that day or an event that is coming up. Just do not rob them of feeling sad, nor rob them of feeling it is OK to look forward to another day or week of their own life.
I remember my husband trying to comfort me when I lost my sister telling me her medical accident was for the best because she would have suffered with cancer and this had removed that future suffering. It was his way of being kind, but it upset me. A death is a death, it does not matter if it is an accident, a health concern, a suicide or an older age event. It is still the end of someone’s life and grief needs to honored. Do not try to make the death have a reason, just leave it as it is. A child lost, is lost, no matter what the cause. Honor and respect the sadness a parent will have and will carry for the rest of their life. Unhappy feelings have to be felt and it is good to know and let them just be.
Allow the senior to grieve give them space and time. I always bring out a picture of the person or pet that has passed and place a candle in front of it and light it on the day of the death and then in the evening for a week or two. It is not meant to be a ritual of faith, it is just a ritual that allows the person to express their grief and remember and honor the passing.
If the elder is very involved in their faith then notify a local chaplain and ask them to visit. Let them have time alone, even if they are in a place of confusion, let the faithful and long heard words of prayers be said for the elder. Let their mind absorb the ritual of faith and let it comfort them. No matter what their chosen faith a lifetime of prayer comes back when they hear old prayers or songs.
Attending funerals, this is simply up to the family to judge. My mother had lost so many friends by the time she passed at 100 years that she was unable to go to memorials any longer. They were just to depressing for her. I actually went to the memorial of her last dear friend’s passing on her behalf. Mother was happy that we were represented and she was able to process the dealth on her own without the large crowd of strangers at the memorial. I filled her in on the service and gave her a picture of the flowers and the memory booklet that they gave to me. It was a good way for her to experience but not get herself so involved she became ill.
Do not under estimate the feelings of an senior or elder with a pet. Often when they lose all of their family or spouse they turn their love and whole inner support to a pet. This make the pet like a family member and dear loved one to the senior. Honor the pet as you woud a person, for they are thought of like that by the elder.
Life without my sister has never stopped being sad. She has been gone twenty years now and you would think I would have tucked it away. But often I find tears on odd occations over her memory. Mother was the same way. There is no time limit to grief, some process fast and well, some accept the loss because they have experienced so many losses in their long years of life. Some grieve a pet more than their spouse. There is no rule…there just is.
I want to thank you for your time with your Aunt and your tender concern over her well being at this time of loss. It is a gentle miracle that she has you there to be with her. Some times its just knowing that someone is there with you that cares that will make the difference in the healing a broken heart. You are there and you have given her that support and I honor you for your caring touch.
Please do go to my website at www.seniorcarewithspirit.com for more ideas. I have a great e-book called Care Giving 101 Workbook that will help you with giving care in your own home or in the senior’s home. It has all the basic home nursing tips and gives you ideas to support yourself as well as your spouse or loved one. These books are very popular with care givers and I encourage you to buy one so you can feel more in power of your situation as the care giver. It can be very lonely out there all alone when you are giving care – I want to make the experience more comforting for you.
I write these blogs to share information that I have gathered in my many years of care giving. I am now tending to my husband with Alzheimer’s and my books and services are how I’m able to stay at home and care for him. Thanks for all you are doing for your own loved one, blessings. francy
PS I am on Twitter @seniorcaretips and I would love to have you listen to my talk radio show on senior care issues just click the radio button on my home page. The show is on demand so you can listen whenever you have time.