Am I doing the right thing?

Angel03

Registered User
Mar 26, 2024
21
0
Hi, I've posted here before about my Nan's sundowning all through the day and night. It's been nearly four weeks since this started with the odd day were she just seems to crash and sleep. On the days she is awake her shouting for me is near constant. It never seems to stop. Her GP prescribed her Lorazepam and later Zolpidem to help ease her anxiety and to help her sleep but it's barely had an effect and is unwilling to prescribe her anything else.

It got so bad that two weeks ago I rang social services to see what they advise. The lady I spoke to suggested a two to four week respite and "see what happens". While a break would be nice my main incentive for agreeing was the promise that nursing homes work with doctors that will find the right medication to settle her. She said "trust me, you'll see an improvement".

After dragging their heels it looks like some progress is being made in finding her a place. A man may be coming to assess her in the next few days but I'm starting to have some second thoughts. These past few weeks she seems to be in decline in ways beyond her anxiety. Other than shouting out my name and the odd engrained phrase she's struggling to get words out and using the wrong words for things, it takes some time to interpret what she wants. While she knows to shout my name she doesn't always seem to know it's me and talks to me as if I was a nurse attending to her in hospital. On the one hand her already thinking she's not home may make being in a care go smoother I worry a genuine change may unsettle her further and make her go even more downhill.

I spoke to an admiral nurse about this and she told me to brace myself for her declining while she's in there. She also said given her age and frailty she doesn't think the doctors they work with prescribing her anything different...but that's the whole reason I wanted her to go in the first place. The promise their doctors will find her the right treatment to settle her.

I don't know if this is really right for her. She's been bed bound since Christmas. There has been some suggestion of using a hoist to put her in a communal room with other patients but with her frsilty I have visions they'll simply leave her alone in bed all day with no interaction outside of meals and pad changes.

Has anyone got any experiences they can share because I'm starting to have serious doubts.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,735
0
Kent
Hello @Angel03

People tend to blame care homes for a deterioration in their people with dementia when it`s really the deterioration which helps carers to decide on respite or permanent care.

It sounds as if you are experiencing that deterioration now.

I have visions they'll simply leave her alone in bed all day with no interaction outside of meals and pad changes.

When my husband went into residential care I told staff I wanted his room to be used for personal care and bedtime only. They listened to me and he was always in the sitting room with other. Even when he lost his mobility he was hoisted from room to room.

If you let the home know what you want. , they should comply.
 

Lom

New member
Jun 2, 2024
7
0
Hello Angel03,
I think you are right to have worries about your nan and what would happen if she goes in . Is there any physical reason like a uti or starting of a bedsore behind her increased agitation and more jumbled communication? My thoughts are just that especially as my circumstances are different from yours e.g. Things like being bed bound but just in case they may be of use. Thinking of you and your nan.
Lom
 

Angel03

Registered User
Mar 26, 2024
21
0
Thank you for the replies and I can confirm she's had two blood tests recently and she doesn't have any infection or bed sores. Her behavior is due to her dementia.

It's been a struggle for social services to find a place for her. Last week I had a meeting with two people from a nearby nursing home who were very nice and convinced me she would be well looked after but when I told them that while a break would be nice my primary motivator was the assurance from social services that a nursing home would work with doctors that would be more willing to find the right medication to help settle her. When I mentioned that they both looked at each other as if to say "not this again". They told me that's not something they actually do but that's the whole reason I even consented for her to go into respite.

I was actually slightly relieved when a few days later I got word back they couldn't take her. However social services came back with the news that a home specialising in dementia was willing to take her. When I told her of my concerns she was quite forceful about how I'd previously said how I couldn't go on much longer with no sleep and this was the only solution....at least for two weeks. Reluctantly I had to agree.

Worse was that at least during the day Nan was much better. Calm, lucid and very nice. At one point she took my hand and said "you're the only one who ever stood by me". I felt horrible knowing what was coming but eventually I had to tell her and it was instant floods of tears and accusations that I was trying to get rid of her and done all this behind her back. I tried to remind her she'd previously agreed to go into respite but it didn't make a difference.

At least when the ambulance came to pick her up she was happy and smiley with them as she often is with strangers. Even when she was on her room she wasn't too bad and after staying with her for a few hours I thought she was settled but as soon as I said I was leaving it was floods of tears again. I kept trying to reassure her that I'd be back tomorrow but she just snapped back "don't bother".

I visited her for the first time today expecting more tears and anger but it was like she was half asleep the whole time. She seemed to be glad of me company but I'm not sure she even knew who I was. I expected some decline but not so fast. I'm not sure how I'd prefer her to be at least before she was aware of who I am and where she was but on the other hand at least like this she was calm. I spoke to the nurses there and they said she was eating and drinking fine, was content but said the new environment could be a shock to her system and give it a few days. I did ask about the possibility of reviewing her meds and they said that's not something they would do but maybe they could chase up why it's taking her so long to be referred to the Memory Service and maybe they'd be more amenable to prescribing something.

To be honest I still don't know if I've done the right thing. Even if she goes back to 'normal' this is still only two weeks and then she comes home and likely goes back to the way she was. The only other possibility is she stays in there which is what I think social services is angling for. I just can't help feeling that if she was simply prescribed something to help her sleep this whole thing could have been avoided.
 

Angel55

Registered User
Oct 23, 2023
223
0
💗 Hello

Sounds really hard for you xx. Would she be okay with just something to help her sleep? Would you be okay? If things were to go back to how they were for you both?

My Dad is in a residential place now has been for 18 months. He is getting worse but this is a progressive illness. I would have loved him to be in his own home if I am really honest but he just couldn't be. He has been referred back to the GP recently as his increased agitation, anger etc and low mood is more of a concern than it has been and he has been referred back to the memory clinic . I am not sure what else they could offer to prescribe or suggest but I know that anything they do might not really work that well. How do you feel about your Nan staying where she is?
 

Jessbow

Registered User
Mar 1, 2013
5,888
0
Midlands
Relistically, two weeks is far too short a time for meds to establish and you see the efffect.
Is she under her own GP while she is there?
 

Collywobbles

Registered User
Feb 27, 2018
440
0
We’re conditioned to think that there’s a medication for everything, but if you read around here, disturbed sleep is sometimes an intractable phase which just has to be endured. For that reason, respite care is the best way of dealing with it. You can’t care for your Nan if your own sleep is disturbed for so long.

There are a limited number of drugs which might help with this aspect of dementia, and sometimes none of them do. Sleeping tablets don’t work, because they’re not addressing the underlying cause.

It might be worth trying to move away from the belief that if only your Nan had the ‘right’ medication, things would improve. Sometimes with dementia, this isn’t the case. Pinning hopes on it can lead to dreadful disappointment,
 

Angel03

Registered User
Mar 26, 2024
21
0
I've been to see Nan every day since she's been in respite. The sleepyness is gone and so is the anxiety. She seems calm and even her memory is better, she recalls conversations and interactions she's had with me and the staff. The staff themselves say she is fine when I'm not there and sleeping through the night. This is great and almost convinced me full time care would be good for both of us...except she just seems so sad and always asks me to call social services to get her out early. My reassurance this isn't permanent and she will come home seems to be the only thing that is keeping her going. Also according to the staff she's not eating much, at home she still has a healthy appetite.

It does seem as though while she's had positive changes in some aspects she's declined in others. One step forward, two steps back. The staff seem to think she'll buck up as she gets used to it but I doubt it. Even if she does by the time it happens it will be time to bring her home were she may go back to how she was.

💗 Hello

Sounds really hard for you xx. Would she be okay with just something to help her sleep? Would you be okay? If things were to go back to how they were for you both?

Thank you. While she can be a handful during the day I've always been able to handle it. It's just the lack of sleep that's the problem. If not for that I'd be completely fine.

Relistically, two weeks is far too short a time for meds to establish and you see the efffect.
Is she under her own GP while she is there?

It sounded far fetched when I first heard it but the women from social services was quite convincing. She told me her own mother goes into respite every few months to give her a break and they sorted out her meds so she wasn't agitated anymore. I guess I just wanted to believe it.

The head nurse left it up to me whether she would remain under her own GP while in respite. Since she said another doctor would still be unlikely to review her medication I thought it best to leave her under her own GP. She did say that they would pass on any relevant information to him and he may possibly come to the home to assess her. Ironically if he assessed her while in the home he'd see her calm and normal albeit sad.

We’re conditioned to think that there’s a medication for everything, but if you read around here, disturbed sleep is sometimes an intractable phase which just has to be endured. For that reason, respite care is the best way of dealing with it. You can’t care for your Nan if your own sleep is disturbed for so long.

There are a limited number of drugs which might help with this aspect of dementia, and sometimes none of them do. Sleeping tablets don’t work, because they’re not addressing the underlying cause.

It might be worth trying to move away from the belief that if only your Nan had the ‘right’ medication, things would improve. Sometimes with dementia, this isn’t the case. Pinning hopes on it can lead to dreadful disappointment,

I was hesitant to medicate the issue but it got to a point were I felt something had to be done. I guess my problem is that I've found that her GP barely tried. He too seemed reluctant to prescribe her anything and it was because a social services at one point felt she'd be better off in hospital and she was assessed by a paramedic who felt disagreed she needed to be hospital but could see how she was impressed on him that she needed something to help her sleep.

It didn't help that a brief time I had night sitters in to see if they could deal with her while I tried to get some sleep would look at the medication and say things like "that's no good" or "she needs a bigger dose, one tablet a day is not going to touch the sides", I know they are not medical professionals but they do have experience and even they seem to think not enough was being prescribed.

I accept that that medication may not be the answer (there may not be one) but I'd more readily accept that if anything beyond the bare minimum was explored in this area.
 

Angel03

Registered User
Mar 26, 2024
21
0
Just thought I'd update and say Nan is coming home tomorrow and don't know what to expect.

The first week in respite she was completely calm and not at all anxious. She was also pretty lucid when she wasn't tired and knew were she was and who I was. and could hold a conversation The staff said she was the perfect resident and no trouble at all, they told me they didn't even need to use any medication to calm her down or help her sleep. I'd almost contemplate letting her stay permanently is she wasn't so set on coming home.

The second week however I saw a change in her. She seemed confused and didn't always know who I was. These last few visits she seemed to bang on the rails of the bed. These last few visits she's even struggled to take a drink from a beaker as she can't seem to the mouth piece in her mouth without help. She was like this at home sometimes so it's not something I couldn't handle but it does make me wonder if this is the first signs that once she's home she'll revert to how she was before she went in with the sundowning that last all day almost every day.

While the break has been nice I'm still not sure if I did the right thing agreeing to respite or if I'm doing the right thing bringing her out.
 

Bod

Registered User
Aug 30, 2013
2,015
0
You did the right thing by using Respite, if only to recharge your batteries.
For her, 2 weeks is not very long to settle in a new environment, for anybody.
However the 1st week went well, the staff coped well, the 2nd possibly the novelty wore off a bit, and the true self came out. The staff coped well.
Do not be afraid to use respite again, but seriously consider a permanent move, for both you sakes.

Bod.