I am new here, I need advise on deciding how best to help my mom

[67 everett]

My dad died four years ago at the age of 89. He and my mom were married for 69 years. Before he died he made me promise to let my mom stay in her home and I have power of attorney over my mother's affairs. My sister and brother wants her in a nursing home. We have two ladies from my mom's church that stay with her during the day from 10am til 2pm then again from 5pm until 8 pm every day. We can't afford to have someone with her 24/7 so she is by herself at night but sleeps well. She lives within five blocks from my wife and I. She plays like she doesn't remember things and to some extent I understand that. But she plays games with my sister. She acts like she can't walk without a walker but she does all the time when my sister isn't there. My mom's Dr. says she has "Dementia unspecified W/O behavioral disturbances" whatever the heck that means. Here is the problem I am coming here for help.

Recently she has been going outside, walking around during the day between the ladies being there. The neighbor calls my sister and tells her that mom is out and getting close to the street (without her walker). This has happened four times in the past couple of weeks. My sister is trying to get social service involved to force her into a home. I think my mom has a right to go outside her house but doesn't rise to being forced to move out of her home. She, my mom, said she would prefer to die than go to a nursing home.

Here are my questions. Can I find a way to prevent her from going outside? Am I wrong for letting her stay by herself at night? Is she better off at her home even if she gets hurt or in a nursing home where she may be abused? Can she be forced to move out of her house? This story is a lot more complicated that this rant tells but it should give someone more experienced that I am to give some thoughts.

 

[lin1]

Hello 67 Everette, Welcome to TP.
I am sorry to hear about your Mum.
You said before your Dad died " he made me promise to let my mom stay in her home" .
Sometimes we make promises in those and similar circumstances with the full intention of following them, then later on find that for whatever reason it is not really in the persons best interest or practical for the family .
I am not trying to say your Mum shouldn't stay in her own home but I feel you need to sit down with your Sister. listen to each other and talk calmly about what is really practical and in your Mum's best interest, even if the outcome means you can no longer keep your promise to your Dad. I know this is something you do not wish to hear, but I felt it needed saying , because it is obvious you love your Mum and want with all your heart to keep your promise to your Dad and IMO may feel guilty if you cannot keep your promise even while doing what is best for your Mum
I've made promises , which I intend(ed) to keep, but in the knowledge that due to circumstances beyond my control, I may not be able to.

Yes your Mum has a right to be able to go outside however, their often comes a time when a person with Dementia starts wandering and puts themselves in danger , this may be because they are dressed inappropriately, become lost and not know their way home or cross a road when they shouldn't so get run over to name just a few things.

I am sorry to say I know of no ways to keep a person safe when they are alone, their are tracking devises available , if you're in the UK a few Police forces provide them , I believe Social services do too, they can also be purchase privately it Would also be a good idea to inform your Local Police that your Mum is a vulnerable person.

Sorry I am not sure what W/O means
Dementia is the coverall term used for every type of dementia , Alzheimer's disease and Vascular Dementia being two of the commonest.

I am sure others will be along later today

PS
You are not ranting, you're just crying out for a bit of helpful advise and some cyber support, knowing my fellow TPers as I do you will get plenty here

 

[Grey Lad]

Hi 67 Everett

Unfortunately, there is nothing I can add to the sound advice of lin 1. I know others will be along soon and share their experiences and give advice. Good luck.

 

[optocarol]

W/O would usually mean without.

 

[lin1]

W/O would usually mean without.

Thank you, I was wracking my brains out

 

[RedLou]

The advice to sit down and chat to your sister is sound. You two need to talk calmly and appreciate each other's point of view.
I knew my father could not go out without a strong companion (i.e. male carer) the day I saw him step in front of speeding traffic. Luckily, my son in law was with us and reacted in time, being strong enough to haul him out of the way. My father refused to accept this and wanted me to hire one of the female state-provided carers who helped him wash etc. for an additional few hours a day to go out. I refused. Demetia-sufferers in general refuse to accept their diagnosis. They think they are a lot less confused than they are and when something goes wrong it is someone else's fault.
As a compromise, could you look at assisted living for your mother? (Caveat: does not necessarily solve the problem of her safety when out??)

As a PS - in the long-term - I'm sorry to say this - it may be that your mother is unhappy wherever she is. That was certainly the case with my father. When I maintained him at home with carers, he would ring me to tell me how miserable he was. When he went into hospital he would tell me how miserable he was and how he wished he was at home. In the nursing home, he told me he preferred the hospital ward to 'this bedlam.' The truth is, he wants to go back in time. To when he was not confused and was more mobile. To when he had a life. You may have to accept that neither you nor your sister can make your mother happy, which is a very hard thing to come to terms with. You can, however, keep her safe.

 

[Beate]

If she is prone to wandering during the day then she shouldn't be left unsupervised for her own safety. This doesn't necessarily mean a care home though it may be on the cards sooner or later. Get her assessed by social services and enquire about day care and sitting service, plus tracker devices. As others have said its noble you are trying to keep a promise but not realistic, and there will come a time when keeping her safe is more important than keeping a promise.

 

[Witzend]

This is very hard for you. I don't honestly think there is any way you can stop your mom from going out alone without locking her in, which to most people cannot be considered in case of fire. Also, the person may become extremely angry and agitated if prevented from going out. My FIL was like this and I was constantly worried about him getting run over or causing an accident that would kill or injure someone else, since he was apt to just charge across the road having barely looked - he was still very physically fit then and insisted on going out a lot on what I used to call his 'route marches'.

Did your mom have dementia when you made the promise to your dad? Even if she did, your dad may not have realised that there very often comes a point where a person with dementia needs 24/7 care, which means someone on hand ALL day, ALL night, day in, day out. This is often very difficult to manage at home without carers becoming totally exhausted.

I think what happens in many cases is that we muddle along somehow, while knowing that the person is not 100% safe alone, but we feel they are not yet ready for a care home, and it is such a huge step that we can't bring ourselves to make that decision. But eventually there may come some sort of crisis - not necessarily anything too terrible - which makes us realise the time has finally come. By the way, 99% of people with dementia will usually say, if asked, that they don't want to go into a care home, but the fact is that many people do very well in them. It is true that there are some bad ones, but as many on here will testify, there are also many very good ones.

The tracking devices others have mentioned can be very helpful, as long as you can be sure the person will wear or take them - always a consideration when it comes to dementia, when people are unable to remember instructions, no matter how often you tell or remind them. But they won't stop them going out in the first place.

One small thing to be thankful for, if your mom has started wandering, is that at least she has chosen the beginning of summer to do it, and not the freezing days and nights of winter.

 

[Pickles53]

As a PS - in the long-term - I'm sorry to say this - it may be that your mother is unhappy wherever she is. That was certainly the case with my father. When I maintained him at home with carers, he would ring me to tell me how miserable he was. When he went into hospital he would tell me how miserable he was and how he wished he was at home. In the nursing home, he told me he preferred the hospital ward to 'this bedlam.' The truth is, he wants to go back in time. To when he was not confused and was more mobile. To when he had a life. You may have to accept that neither you nor your sister can make your mother happy, which is a very hard thing to come to terms with. You can, however, keep her safe.

RedLou you have exactly described how my mother was. She 'hated' being at home alone and was very keen to move nearer to us. Both I and her CPN were satisfied that she understood this meant moving to a care home. (We looked at assisted living options but in the end it was obvious she couldn't manage there.) So we organised the move with high hopes, only to find that she hated the care home too. She never really settled there, but at least we could all visit often and keep her company.

I could not put it better than your last two sentences and I had a lot more peace when I finally realised this.

 

[canary]

I can understand your fears about care homes, but I am one of the people who has a relative in a care home and she has thrived.

Early on, mum wanted me to promise that she would never go into a care home and it seems to be something that most elderly people fear. I did not promise this, but promised that I would do my very best to do the very best for her It became obvious that she could not live at home home when she stopped eating (she could not cook anymore) or drinking, or washing/changing her clothes, stopped doing housework, forgot to take her pills or took 4 days worth in one day, got into arguments with her neighbours over the bins and started wandering around during the night in her nighty. She could not live with me as I already care for a disabled husband and I was pulling my hair out.

Eventually she had a TIA and ended up in hospital. From there she went into a care home and I can honestly say that she has never looked back. She had lost a lot of weight and was dehydrated, was dirty and confused when she went into hospital, but now she is looked after by some wonderful caring people who understand about dementia and she is fed, washed, looked after and kept safe. She has settled there and made friends. She has good days and bad days still and sometimes says she hates it there, but on the whole, she is content.

Not all care homes are abusive and there are some lovely ones out there.

 

[67 everett]

I want to thank all that have responded. I am less troubled about my promise to my dad. Sometimes life does get in the way. I am truly lost....

 

[Skippii]

We have found social services to be a great help in keeping mum safe and at home. They can offer practice advice and help, and as they are not emotionally involved they come up with solutions we wouldn't have thought of. They helped organise lunches to be delivered (there is a small charge for this) , fitted am improved centrally monitored system of smoke/heat sensors and with motion detectors so we can see which rooms she is in (via justchecking.co.uk ). They have also organised respite care and offered daily visits to help wash etc (she won't alow this so family do it).

The only problem with them really is they want to speak to mum to ask her what she needs, and of course she doesn't think she needs anything and gets very upset at the idea. We have poa so they just speak to us now.

Hope you get your mum some help. Please do talk to your sister, there can be so many misunderstanding and if your mum is acting differently with you both that won't help.

 

[RedLou]

From the spelling I'd guess the OP is in the US, Skippii - not quite sure if they would have access to the same social care system??