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She exclaimed, "I can never be left home alone again! I feel anger as she acts like my three year old granddaughter. Why is she so fearful? My mother was a teacher, a feisty, adventuresome, brave woman. I grieve over the loss of who she was. I finally decided to reach out for a support system so here it is in the wee hours of the morning and I googled for help and God led me to this site.

Since Mom has macular degeneration, using written notes is no longer feasible as her eyesight has deteriorated the last few years. She asks the same questions over and over and over again. For instance, if a new great-grandchild is born, she will ask many times a day for several days the name of the grandchild.


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Every day she will obsess over several questions. I get weary of answering the same question and I get an edge to my voice and I know that hurts Mom's feelings. Teacher Michael Fassio cared for his Italian-born mother Renza through the progressive stages of dementia from until her death in I did notice she used the weekly television guide as a calendar to mark when I was going to visit, even though I went on the same day. But she went shopping as usual, and still cycled.

Then one day she got lost when cycling locally. By Renza was living with Michael, no longer able to deal with shopping or money. But the less she could do, the more restless she became. So she and Michael would go for walks. Five or six times a day. She got so fit. Twelve months later, however, Michael was finding it hard to cope and still finds that time difficult to talk about. This passed but Renza also stopped speaking English and reverted to the Italian of her childhood. But I was truly worried that no nursing home could care for her and understand her as well as I could.

Renza became ever more childlike.

Dementia: People share their own stories | Age UK

Even if given to dramatic explosions of Italian temper that Michael laughingly likens to a performance by Sophia Loren. He even managed to fulfill her dream of a visit to her sister in Italy. Not that easy because, although you can ask for assistance with travel, people with dementia hold no truck with timetables! In fact I look back and I feel I got to know her better because of the dementia. She told me all about her childhood and her family in s Italy. Find out how to buy Michael's book, Dementia and Mum, who really cares?

They are the ones who are making what are sometimes very difficult decisions about their loved ones while being under great stress themselves. Then I did an MSc in ageing and mental health before seeing this job advertised and I knew it was perfect for me. You might go a few times to help them get used to the building. Now think about you.

How accessible is the home from you, do you need some extra support over the next few months, especially if you have to close down a family home and put it up for sale?

Galen's Mother: A Journey Into Dementia - Facing Dementia - CNA Insider

This can be very emotional and draining if there are a lot of possessions to sort out. Get some independent financial advice regarding the sale of the property to assist you with investing the money to pay the monthly bills at the care home. Talk to the home about setting up a Direct Debit and if your parent will need some cash for activities, hairdressing and chiropody, and make the appropriate arrangements. Your parent will need to have their clothes labelled — ask if the home can help with this or give yourself time to complete this task as it can be lengthy.

Do not feel you have to visit every day. Give your parent time to settle in and make new relationships and friends in their new living environment. Set out to work in partnership with the staff at the care home. It is really helpful for the care home to have some photos and a written time line, or life history , about your parent. If they particularly dislike something, and love something else, make sure they know.

I Am in Dementia Prison with My Mom

Most homes encourage some furniture and ornaments etc. Ask if you can prepare the room before your parent goes to live there so things look familiar. Ask to see the care plan and spend some time reading it so you can add things or discuss treatments and care with the staff. Make sure the care home know about any hospital appointments, anniversaries, birthdays etc.

In addition you may wish to include: If you are escorting your mum to hospital it is vital that you remain calm and relaxed, any tension or stress can easily transfer to your mum. When you are driving to the hospital try not to focus on the fact that your mum will be staying overnight, and do not give too much information.

This will avoid causing more stress or anxiety. When you arrive at the hospital the first thing to establish is good communication with the staff. Talk to them; give them a good understanding of your mum. Let them know what she likes to be called, what her favourite items are and whether she requires help during meal times and going to the bathroom. Make sure the hospital staff have up to date and correct contact details for yourself or another relative who cares for your mum.

Remember you may even be able to request that you can stay overnight with your mum and visit outside of usual visiting hours. This is dependent on individual hospital policy but we recommend you ask. My mother has vascular dementia and is in hospital following a fall. She has had a hip replacement but her recovery has not been good. She is unable to walk now, she is not eating and drinking, and has been treated for pneumonia and a urinary tract infection.

Mum has early Alzheimer’s and needs 24-hour care. Where’s the help we were promised? | Chris King

Firstly, speak to the hospital doctor and Discharge Coordinator and let them know that you would like to care for your mother at home. She may be eligible for Continuing Care Funding, so ask the ward lead nurse to get this process underway as it can be lengthy. It may not cover the full cost of the care but will cover a large part of it. Request an Occupational Therapy assessment of your home so that the right equipment can be supplied. This may be a specialist bed, a hoist, an air mattress and a suitable chair.

You will need some help with caring for your mother at home. The Discharge Coordinator can help with this and you can look at advice that Age UK have and The Live in Care Hub , as you can have help coming in intermittently through the day, or live in care which supports 24 hours a day, seven days a week. What do you advise? We all have different ways of coping with life changes, and adjusting to changes takes time. Being given a diagnosis of dementia, or hearing that someone you care for has this diagnosis, can be a daunting, unsettling and often stressful experience.

Coping with life changes can be difficult, and from diagnosis onwards, there are many changes that you both may experience. However, there are things you can do to make the journey go more smoothly, and there are sources of support and help available. This means being kind to yourself, and reassure yourself that you are doing your best for the person you care for. Feelings of guilt are common emotions when caring for someone with dementia. It is important for you to eat and sleep well, and also to look after your own health.

Take good care of yourself so that you can be in the best of health to cope with any issues you may come across. Some people find writing lists useful to break down the steps needed for each decision or task they may need to make. And maintain your sense of humour — this is a healthy approach for both of you. Be prepared to challenge your normal standards in order to make your life easier. Look for simpler options rather than trying to make life situations perfect. If they would rather wear a coat indoors, or two different coloured slippers, that is ok too. As far as possible, aim to include the person you care for in decisions and be flexible.

And try to take time for yourself, to put the situation into perspective. Talk the situation through with friends and family. Some people like to be asked to complete tasks or to visit so they can feel they are involved. Try to plan ahead if possible, so that if the situation changes, you have a second plan or alternative options. Many families find it useful to look for a care home that provides respite a break should they need it in the future. Some people hold family meetings to discuss a plan and share the care. Many carers find it useful to look at finances early on. This may include Lasting Power of Attorney, benefit entitlements, or setting up direct debits for automatically paying monthly bills.

With some plans in place, you can start to focus on living life and put some of these worries aside. I promised I would look after him, but I am exhausted and often feel that I cannot carry on any more as he does not know who I am or where he is. It feels pointless carrying on.

Eight years is a long time to look after a person with dementia. Caring is emotionally and physically draining, and everyone needs a break and, at some point, a lot more help. Deciding when to get some help can be very, very hard as it can feel like a betrayal despite the changes your relationship has gone through. There is help for you though.

Planning for the future is also very important for you and your husband.


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  • Having a plan can help you to cope with the decisions for the future. My father is physically unwell but he is caring for my mother. He refuses to go to the GP to get his health attended to. Research shows that carers supporting someone living with dementia are more likely to experience poor health, stress, depression or physical disabilities than the general population. This is because caring for someone can be very demanding on your own physical and mental health.

    His role is vital in supporting your mother, but not to the detriment of his own health. If your father does not visit his GP for his own health issues, this could affect his ability to care for your mother now or in the future. It is important that he gets information and support for himself and your mother as soon as possible. Consider asking someone else to talk with your father.

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    They may be able to persuade him differently. Ask him if you can contact the GP on his behalf to discuss your concerns. There is support available! Ask other friends or family to offer support, e. It is useful to find out what other support is available in your area, such as respite, day centres, sitting services, local support groups. Contact your local Social Services department; they will be able to advise on available support.

    They are both entitled to this assessment and it will enable the authorities to identify what their needs are.

    20 Things to Remember If You Love Someone with Dementia

    Please phone the Admiral Nurse Direct helpline where you will be able to speak to a dementia specialist nurse for individual advice and support, and to find out if there is an Admiral Nurse available in your area. Our nurses can provide an objective view about your situation, provide a professional listening ear, and give your father permission to accept whatever feelings he may be experiencing.

    Your Mum may be physically and emotionally drained from caring for your dad full-time. You should encourage her to visit her GP to check whether she has a physical medical condition. Your Mum should look to join a support group where there will be other carers with the same experience who she can talk to. If you live nearby, you could arrange to look after your Dad for a few hours on a scheduled basis so your Mum gets some respite time and can do a hobby or attend a social group.

    My husband died six months ago. When he first died I felt a sense of release. I would like him to be here as I miss him so much. Sometimes our feelings surprise us, as we can long for a situation to end, and that drives us forward to manage some very difficult phases of our lives. Caring for a person with dementia is often likened to a living bereavement because of the changes the illness can bring to the life of the person with dementia and their family.

    Living with a roller coaster of feelings for so many years can make bereavement after the person has died difficult to manage. Feelings of sadness, anger and loneliness are natural feelings when someone close to you has died. However, if these feelings are taking over your thoughts for most of the day, and preventing you going out and completing everyday tasks it may be as well to go and talk to your GP. It is possible to have depression after someone has died, so if you have noticed prolonged low mood e.

    Skip to content You are here: Commonly asked questions How do you get a dementia diagnosis? Discuss any concerns you have with the GP. How can I make going out to the shops with my husband easier?