Awaiting Diagnosis, How Do We Cope With Sleepless Nights and Constant Demands?

3 answers | Last updated: Sep 13, 2016
Sad grandaughter asked...

My grandmother has yet to be diagnosed with dementia but will be having tests in the coming fortnight. After a fall and a 1 month hospital stay 3 months ago, she is scared to be alone at any time. As a family we are trying our hardest to enable her to stay at home as she says we will be throwing her away like rubbish if we consider a care home which we cant really afford anyway (we lost my grandfather 7 years ago, they were together 57 years) she has had someone stay with her every night, my mum and auntie take it in turns in the week and I stay there every weekend but also have to work on the weekend. She barely sleeps at night, even sleeping tablets dont seem to work. I really want to be able to cope but am struggling we all are. She literally calls for help every 30 seconds, if she is in bed she says she wants to get up and sit down, then she comes to sit down and 30 seconds later she wants to go to bed. This can go on for absolutely hours until around 4am and all of us have to work the next day, she calls out even when you have told her you need to get ready for work, have a shower etc. I find it so difficult to ignore her pleas for assistance. Sometimes she calls and says she didnt, other times she calls and when you ask her what she needs or wants she says 'nothing'. She recognises all of us but just calls out hello, hello rather than adressing anyone by name. She may be laying in bed but will call you to tell you she wants to sleep etc. I am really struggling to control my temper, especially after finding out that when my uncle (her only son) came to stay with her as he lives abroad, she wasnt exhibiting these behaviours and would get out of bed on her own to go to the toilet, make tea etc. She refuses to listen to music, watch anything that may stimulate her. I have tried to prompt her to talk to me about the good old days etc, the village she came from but she says she cant. She barely eats and then wonders why she doesnt have the strength to walk or get up unassisted. Its breaking my heart to see her like this, we all want to help her stay at home but we are at our wits end. Any advice would be appreciated. Thanks in advance

Expert Answers

Monica is an occupational therapist and designer of adapted dementia products through her company MindStart. Activities for Persons With Memory Loss. In addition, she works with the Minnesota-North Dakota Alzheimer's Association and the University of Minnesota on dementia issues. MindStart provides age-appropriate and stage-appropriate dementia activities, such as games, puzzles, and books. The items are simplified to meet the needs of various stages of dementia while remaining dignified and familiar in appearance

You are dealing with a difficult situation and need to be conscious of taking care of your own health. Caregiver health can suffer if stress cannot be relieved and kept in check. Some hired help to come in the home may be needed to help relieve some of the burdens of care.

In addition, here are some thoughts that might help you understand your grandmother's behavior. I am guessing her memory is very short. She could ask to go to bed, lie down, and then literally forget that she just lied down 30 seconds ago. So she then asks to get up, forgets she just got up, and the cycle continues. I would talk to her physician again for further suggestions; perhaps a different medication would be more effective.

Also, you say that she knows your faces but does not use your names. Those are 2 different things. The face is connected with a particular role - for example, you as the granddaugher. Knowing that she is your granddaughter is easier than trying to remember a name, especially at the exact moment that she is calling you.

For reminiscing, the way you communicate is very important. She likely cannot answer questions about her younger years, as she does not remember. That is why she says she can't. Instead, try showing her pictures of her childhood home and family; doing a simple puzzle together; singing a song together.

She may be needing more help to eat than is being realized, so that should be looked at closer. She may need someone to help her get the food onto the spoon and a prompt to lift it to her mouth.

It is great that you will soon be getting testing, as I think that will give you a lot more information about her current capabilities and current deficits. Ask for further resources at the appointment, as there are places that offer dementia education and support groups. Try to stay patient - it is the brain damage that causes her to do these things. Good luck to you all.

Community Answers

Badkat answered...

Is your grandmother ill? My mother passed away a few days ago, and was exhibiting these symptoms the past few weeks. I am told and have read that night is when they try to sort out their issues. Mom didn't respond to sleeping aids either, had me up all night for nonsense, but during the day was aware of her night time confusion. It's very difficult...I left my home 3000 miles away to care for mom and am so glad I was here at the end, but it was the hardest thing I've ever had to do. I understand the anger and resentment...I never showed it to mom, but would go outside and yell at the world. I don't know if this helps, but you are not alone. Please try to get some help...there are so many agencies that offer volunteers here....hopefully you'll find some help. Bless you for caring for will never regret it.

Binky answered...

She really needs to see a health care professional to determine whether this is delirium or dementia. There is obviously something very wrong causing her agitation. She could have a urinary tract infection for example or another medical problem causing her agitation. If all medical reasons are ruled out, her agitation is caused by something else. You need to know what is causing this - that is absolutely KEY. And you need professional assessment to know. If it is dementia alone, then she could benefit tremendously from proper medications. She is suffering and you need to get help for her. She is not sleeping. This in itself can cause delirium. Delirium can present like "dementia" but it is an acute condition caused by another underlying problem. Perhaps she is in pain for some reason and cannot tell you. The agitation is her way of communicating this. I wish you all the best to get help and rest for your loved one. Get support as soon as possible. Tell your health care professional that you NEED HELP AND YOU NEED IT NOW. Resources for respite care/relief need to be mobilized as soon as possible both for yourself and HER. You cannot do this on your own. You have to take a break so you can re-enter the situation and have the strength to be able to help your loved one. She may not be able to stay in her own home at some point if the situation becomes intolerable and she can get better, more appropriate care elsewhere.