Grandmother constantly trying to leave nursing home....

[topsecret76]

Hello everyone,

This is my first post here so before I begin here is a little background info on the situation.

My grandfather has recently been diagnosed with Lewy Body Dementia and the past months have been complete hell for our family. He spent numerous months in the hospital and eventually he was placed in a nursing home. Things are actually starting to get better with him (for now) so I will jump ahead to my grandmothers situation...

My grandmother had been staying in her home during this period with the help of my parents who happen to live across the street from her. Before my grandfather was admitted to the hospital he was taking care of her. His mobility is better than hers and until Lewy body hit him like a jackhammer he was doing the groceries and doing most of the work around the house. My parents decided they would pick up the slack and feed my grandmother 3 times per day because alone she forgets to take her meds and doesn't eat. My parents also added cameras to check up on my grandmother for her safety since she also has heart problems and falls. Add to this that my mother was going to the hospital everyday and dealing with grandfather and his condition.

Over the past couple of months my grandmother has been getting progressively worse. She already had memory problems and had no short term memory but then she started forgetting who my grandfather was and saying he was her father amongst other things. She has now gotten to the point that she cannot have a normal conversation because she will just keep asking the same questions and making the same comments over and over again.

My grandmother ended up getting a pneumonia and had a complete break with reality. She was then transported to the hospital where she stayed for a couple of weeks.

We were then informed that she had alzheimers and was not in any kind of condition to be staying home alone even with the safe guards my parents have put in place. Keep in mind my parents still work full time and I do as well.

To be honest I don't even know how my mother has survived the last couple of months. She's in and out of the hospital for my grandfather that keeps falling because of Lewy body and now she is taking it upon herself to do the same for her mother. My mother is starting to deteriorate physically and is on the verge of a break down.

Anyways my grandmother was transferred to a nursing home on friday. My mom and I assisted with the process and we explained that she was going to this nursing home until a room opens up with my grandfather so they can be reunited. By the time the transport got to the nursing home she had completely forgot what we explained to her over and over all morning and completely lost it.

We explained that this was temporary but she would not have it. She cried and was angry and we explained again that is was temporary. Of course she said we never told her and was angry at us.

The next day my parents went to see her. When my parents arrived she had packed up all her clothing and effects and told my mom she was ready to go home. My mom tried to re-explain to my grandmother the situation but she just grew increasingly hostile towards her.

The next day the exact same thing happened. My grandmother packed all her things and was even more hostile towards my mom. She said all sorts of nasty things to her which is obviously taking a toll on my mother since both her parents are losing their mental capacities and are quite harsh with her on top of the fact that this has become her life. All she does is care for her parents and in return gets nasty comments from them.

Today was my day to go see my grandmother to give my parents a break. Same thing as the other days. She was sleeping in her bed without blankets because she had packed them with all her clothes and was waiting to go home. She was nasty during the entire visit (with me and the other residents). She barely ate her lunch. Told me to tell my mom that she was starving (although she had a full plate of food she refused to eat) and indicated that tomorrow was her last day and that she was going home and then didn't want to see us ever again.

I'm at a loss for words at this point. I don't know how are family will keep on surviving this if she keeps doing this every day and gets more and more nasty with us.

Has any one else had to deal with someone who was packing every day and getting ready to go home? Any advice for how to deal with it?

Thanks
Denis

P.S: My mother should be considered for sainthood!

 

[Christin]

Hello Topsecret, welcome to Talking Point. I am sorry to read your post, and i send my sympathies to you all. You are all facing a very difficult time.

Many other members will have had similar experiences, and will be along to share. The only advice I can give is that we never mentioned the words 'going home'. We always left to go to work, to the bank before it closed, or rushing to the shops, etc. We also said that the doctors had suggested the stay as a period of convalescence until strength was regained etc. We never said it was permanent. All little white lies but I know it's not easy.

It's great that you are supporting your own mother, I am sure that support is welcome.

Very best wishes to you all. X

 

[Katrine]

Hello and welcome from me too. You certainly have a lot on your plate, and your parents too. I would suggest that you and your mum do not visit your grandmother for a week. She is not going to feel any better at the moment whether you visit or not, and these visits are cripplingly painful for the rest of you to go through.

Talk to the CH staff and work with them to help your grandmother to settle. Speak to them daily on the phone but don't actually go in for a while. I'm not saying she will settle in a week but she needs time for the staff to learn more about managing her needs, without daily escalations of her negative emotions. Sadly, often the sight of family triggers these outbursts, because the person is reminded of what they have lost.

 

[Witzend]

So sorry you've got all this stress and worry. I echo absolutely what others have said about visiting less often. I know how hard it is not to go often - you feel so bad and guilty and feel you owe it to them, but the fact is, it's dreadfully stressful and upsetting for you all, and is probably not helping your grandmother settle.

Ditto the little white lies - tell her anything you think might pacify her for the moment - she's not going to remember what you said anyway. Don't say you are going home - you are just going to the loo or to pick up your dry cleaning or your husband/boyfriend from the station, whatever. Lord knows how many LWLs I told my mother in exactly these sort of circumstances. And it's almost certainly no use trying to explain to her or make her understand why she needs to be there - she's not going to accept it and will never understand. Sadly, she just can't.

Have you asked the staff how she is when you're not there? Though even if she is constantly asking to go home and packing her bags, this is not uncommon in people new to a care home - staff will be used to dealing with it. Almost certainly she will settle down eventually. Many of us here have been through all this, so we do know how hard and horrendous it can be. Do please try to convince your poor mother to cut her visits down - if her own health breaks down because of all the stress, she won't be much use to either of her parents.
Good luck - do please let us know how you all get on.

 

[HelenInBC]

I think Katrine's advice is spot on. Your grandmother is going to struggle at first and perhaps visiting right away will make it harder for her to settle down.

I'm sorry for all you are going through.
Thank you for being there for your mom. My daughter has been a wonderful support for me and my mom with AD too.
Big Hugs to you.

 

[ggma]

So sorry to read what a difficult time you are having
It is not unusual for people to want to leave, my mum has gone through several months recently wanting to leave because she says her family are waiting for her. She is actually referring to her parents and sister and is back in her childhood days.
Like others we never say the stay is for ever just for now, and say we need to take dog out so must go.
The care home will be used to people taking time to settle, it is very early days, have a break from visiting for a few days, and expect it to take some time for your grandmother to settle

 

[Nebiroth]

I also echo the advice, that your mom at least does not visit for at least a week, maybe even two weeks. It may be possible to have the care home staff manager or someone similar to suggest this.

I think that your mom is feeling bound by duty and some guilt to do these visits as she probably thinks it is the "right thing to do". But the point is, they are not the right thing to do, they are actually not only not beneficial, they are harmful.

They are causing your grandmother distress and are wrecking the settling in process (although some people, in actuality, never really settle). They are also upsetting your mom and making her ill.

You might point out that your mom is not helping anyone by making herself ill. If she makes herself really sick or has a breakdown, she just won't be able to do visits or anything else at all.

As I said, I would engage the support of the care home staff. It is possible that these visits are the main trigger for the upset and that your grandmother is more settled outsid eof these times. It is even possible that your mom is alsoa trigger by acting as a sort of reminder of how things are.

 

[Pollyanna]

Hi

I can't add anything to the advice you have been given.

It is incredibly hard not to visit, but the care home need to settle her. They are used to this and should know how to deal with it. You and your parents can keep in touch my phone and take the advice from the care home regarding when to go back.

I hope that this work out for all of you.

x

 

[supporter1]

It does sound like your all going through a very difficult period of adjustment ( both family and grandparents).

I think the advice to not visit for a little while is good , it will not only give you all a breather but it will help your grandmother to settle. I tend to ring my dads CH most days and it helps me feel that I am keeping intouch ( I live along way away) .

This packing things and being ready to go home it not unusual I am afraid. I know my father did this for awhile but that has now passed. We are 6 months down the line with my father in his CH and he still talks about living somewhere else , at the moment Wales seems to be on his desired location apparently ( never lived anywhere near wales !) and he told me it must be a place that does meals ! I tend not to really talk about that just agree with him and change the suject

Listening to conversations that other relatives have with there family members in the CH and everyone seems to get similar demands to go home or live somewhere else. Interestingly I have watched when relatives leave and the residents on the whole settle and become part fo the CH family, carers and other residents chatting and laughing ect with the residents.

I think after a while you start to develop a bit of a thick skin and for me I put it down to my dad wishing things were how they used to be before Alzheimers rather than an actual desire to move to Wales

I see my dad living in a parallel universe to me, not really here but still functioning/ living just thinking and reacting differently .....if that makes sense.

It is hard to watch and deal with though and some days I can deal with it and some days I admit I cannot as I miss my dad terrible and I feel he is not here with us now like he used to be.

 

[at wits end]

My granmother has been in a CH for six months. She has her bags packed with all the things she deems to be 'hers'. She says it's because they keep moving her at short notice, but she has been in the same room the whole time. All the things she doesnt think are hers are left in the drawers. They're ALL her things, some are admittedly new since she's been there like extra nighties, but some of the things she wore for years and now doesnt recognise as hers.

I find it mentally exhausting as her only visitor, so much so this week my husband has been to see her and told her I am away til the end of the week. I just need a break from it. She is constantly asking to go home but never listens to the answers about why she cannot.

I wish there was an answer.