Please do not consider moving your relative with Dementia into your house

[Lisa74]

Hi All,

I just wanted to warn anyone considering moving their relative with Dementia in with them that it can be absolute hell-on-earth- don't do it!

My Gran has lived with my parents for 10 years. She has needed constant supervision for the past five. It has severely limited (read: ruined) my parent's, my own and my brothers lives and I feel really angry that Dementia has affected our family in the way that it has.

If you take on a relative with dementia you should consider the following symptoms:

- Severe aggression- this can take the form of hitting, throwing, spitting, biting, verbal abuse

- Agitation and paranoia

- Incontinence- be prepared to glove up, clear soiled sheets, change nappies, wipe bums. (Clean poo from carpet, slippers, legs, fronts of toilet, sides of bath).

- Night-time wakefulness- at worst this can be 15+ times per night. In our case we now have a baby monitor and a falls mat, which sets off an alarm throughout the night- joy!

- Constant mindless chatter (Wernicke's aphasia) or mutism and an inability to understand basic requests

- Hallucinations and delusions

The burden of this condition is unbearable and I wish people who do not live with (or regularly care for) people with Dementia understood.

 

[fizzie]

I am so sorry you are having such a difficult time with this awful illness. There is help out there even for people caring at home.
A lot of people do care for people with dementia very successfully at home but there are choices and some very good care homes which others find a better solution for them.
Not everyone with demential follows the same pattern of the illness. It is a very cruel disease both for carers and in some ways even more cruel for the person suffering.

 

[CJinUSA]

each case is different

Hello. I'm very sorry to hear your parents are having such difficulties, and even sorrier for your grandmother. No one would *desire* or *choose* to behave in these ways. I also admire your love for your parents being such that you want to tell others that they have been overwhelmed.

But my experience with my mother, who has lived with us since 2008, is significantly different. And so I have to disagree that it is not the end of the world to move your loved one into your home.

Each case is different. There is no one size fits all solution, nor is it the case that every dementia person is aggressive. So I'd be careful about making blanket judgments based on your grandmother. You might decide, if the time should come, to take your parents in, after all. Each dementia situation has its own conditions. I'm sorry your family has been struggling so. It sounds like your parents need some assistance, and soon.

 

[Beate]

While I don't have to deal with every symptom you listed, double incontinence and severe confusion is among them. It hasn't yet put me off, but I have fought very hard to receive support from different sources. As they say, when you've seen one person with dementia, you've seen one person with dementia.

 

[fizzie]

Lisa I just noticed a previous post where you said your parents have no choice but to have grandma living with you. There is always a choice but perhaps they want her living there. If not I suggest that they phone

either


The Dementia helpline is a useful number to have

Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday

or
Age UK freephone 0800 169 2081 - they are open 7 days a week and either of these numbers will have very experienced advisors who will be able to help your parents with the options available to them and how to go about this.

 

[Grable]

Hi Lisa

Yours is a salutary warning which is definitely worth having, although - as others have said - everybody's case will be different. My mother has dementia and is living on her own at the moment. We have always been close, but never been able to stand to be with each other constantly for more than a week at a time, so I know I would never be able to move her in with me. When she gets to the stage of not being able to cope, with carers, in her own home, we will need to find a home for her. That will be awkward for me because I live so far away from her. At present, I can go up for the weekend and stay in her house. If she goes into a home, I'd have to pay for a hotel, which when added to the cost of travel, is going to be a stretch.

My uncle managed to keep his wife at home until she started getting too aggressive. Then he moved her into a nursing home. This shows that a decision to have somebody live with you doesn't have to be final: you can change as circumstances do.

 

[fizzie]

Hi Lisa

Yours is a salutary warning which is definitely worth having, although - as others have said - everybody's case will be different. My mother has dementia and is living on her own at the moment. We have always been close, but never been able to stand to be with each other constantly for more than a week at a time, so I know I would never be able to move her in with me. When she gets to the stage of not being able to cope, with carers, in her own home, we will need to find a home for her. That will be awkward for me because I live so far away from her. At present, I can go up for the weekend and stay in her house. If she goes into a home, I'd have to pay for a hotel, which when added to the cost of travel, is going to be a stretch.

My uncle managed to keep his wife at home until she started getting too aggressive. Then he moved her into a nursing home. This shows that a decision to have somebody live with you doesn't have to be final: you can change as circumstances do.

Grable as you and your mum are close why don't you go to a carers cafe local to you to get some insider info about local care homes or extra care housing and when the time comes move your mum to your area - that way she would have her son visiting regularly and you wouldn't have the stress of travelling. If you look around now you might be surprised and then it won't be a rush decision

 

[Beate]

Grable, couldn't you move her to a home close to you? If you are self-funding, you can pretty much choose any home.

 

[Grable]

Grable as you and your mum are close why don't you go to a carers cafe local to you to get some insider info about local care homes or extra care housing and when the time comes move your mum to your area - that way she would have her son visiting regularly and you wouldn't have the stress of travelling. If you look around now you might be surprised and then it won't be a rush decision

That's what I would see as being the ideal situation, Fizzie - unfortunately, though, that would take her too far from my brother and his children. They don't see her very often when they live just 8 miles away, so bringing her 200 miles from them would be likely to be the last she saw of them. At some point, that might become a moot point, but while she's able to interact with visitors, I live in hope that they'll take pity and do a bit more!

 

[fizzie]

I think that is a lovely thought but very unlikely - the patterns of visiting tend to be set very early on but if she lived near you then you could always set up a skype link so that when you visited with her you can take the laptop and skype with your brother and his family. She would probably have much more interaction that way and the visits from you too. More and more care homes are encouraging skype and have wifi for residents - it is a great idea as long as it doesn't stop visitors altogether.

 

[Lisa74]

Hi All,

It's true that everyone is different - sorry if this offended anyone.

I am not heartless- last Monday I found my Gran unresponsive and was really worried she was going to die. She became responsive by the time the paramedics arrived but was trying to kick and bite the paramedics. I went in the ambulance with her to hospital, as my Mum was at work and tried to make sure she (and the paramedics) felt safe.

A lot (the majority) of sufferers of dementia and their families struggle with some of these issues at some point though.

CJinUSA, my Gran is not aware of her condition, is loved and cared for (spoon-fed, wiped, toothbrushed, washed, put to bed etc.) like a toddler and thinks my parents are her parents so I don't feel sorry for her. She had a lovely life pre-dementia- her twenties were amazing, mine have been affected by her dementia; her fifties were full of my parties- my parents are 58, getting 4-5 hours of sleep at night and do nothing but work and care for her (no parties, meals out).

I am bitter about having through situational constraints had to spend my early twenties caring from her and more recently having found the situation so disruptive that I became unwell and that has limited my future options. I don't really mind if I sound selfish because selflessness has got my family nowhere.

It's ok if people choose to have their family members live with them so long as they are aware of the issues that might arise if they do

 

[Karina A]

Mum with us

Having my mother live in our house for the last 15 years has not been easy and now having developed dementia it is becoming more challenging every day.
The future makes me very nervous as we do not know what it will bring and which elements and symptoms we will be dealing with.
I am taking this one day, week, month at a time and trying to remember that this is a choice for me to make bearing in mind the effect it has on my family.
All any of us can do is our best in that moment and review our choices regularly.
Today it was a good choice who knows what tommorow will bring?

 

[CJinUSA]

Hi All,

It's true that everyone is different - sorry if this offended anyone.

I am not heartless- last Monday I found my Gran unresponsive and was really worried she was going to die. She became responsive by the time the paramedics arrived but was trying to kick and bite the paramedics. I went in the ambulance with her to hospital, as my Mum was at work and tried to make sure she (and the paramedics) felt safe.

A lot (the majority) of sufferers of dementia and their families struggle with some of these issues at some point though.

CJinUSA, my Gran is not aware of her condition, is loved and cared for (spoon-fed, wiped, toothbrushed, washed, put to bed etc.) like a toddler and thinks my parents are her parents so I don't feel sorry for her. She had a lovely life pre-dementia- her twenties were amazing, mine have been affected by her dementia; her fifties were full of my parties- my parents are 58, getting 4-5 hours of sleep at night and do nothing but work and care for her (no parties, meals out).

I am bitter about having through situational constraints had to spend my early twenties caring from her and more recently having found the situation so disruptive that I became unwell and that has limited my future options. I don't really mind if I sound selfish because selflessness has got my family nowhere.

It's ok if people choose to have their family members live with them so long as they are aware of the issues that might arise if they do

Okay, I understand better, but I do want to say that some of us don't mind having a parent in a situation that is *entirely* dependent like the one you describe. I have the same tasks to do with my mother that your parents are doing. I work full time. I have carers in to help during daytimes. My husband and I haven't had a vacation since 2008. We get to go out for dinner because we pay a carer to be at home while we are out. Six nights a week, I am cooking dinner and feeding my mother. She is not ambulatory, so her every movement, including toileting, is on us or her carers and us (it takes two people).

We are up usually once per night, and often twice, sometimes five times a night, because my mother can get restless. We have no children, so there is no one here helping - it's just the two of us and the carers we hire for daytime assistance. My mother is now in hospice, but she has improved, so they will likely take her off hospice soon.

I have given my life over to this situation, and I don't feel the kind of resentment you have expressed. I might also add that I have had cancer surgery and am under a cancer watch. My life is not easy, but I can't imagine not having my mother here and having her in a care home, instead. It's a choice. She has sufficient funds to be in a care home. I don't want her in one.

Not everyone is cut out to be a carer. There is no crime in that, as I have said on these boards before. Some people end up with life-long resentment. What troubles me about your post is that it's one thing to speak because one's upset about one's situation, and it's another to take one's experience and generalize and give advice as if the one experience is the same for everyone. It's not. That is why I commented in the way I did.

I deeply regret that your family is in this situation. You are too young to be carrying these burdens. You haven't had your life yet. If you are in the UK, there are social services that can help your parents. In the U.S., there are also social services that can help, but in a more limited fashion.

Why not try some of the social services that others have suggested. This seems too great a burden for your family. I'm sorry.

 

[susy]

Thank you for sharing your feelings on here. It is stark warning to anyone with children to really weigh up the future.
What I am getting is a feeling of resentment that your grandmother had had a great life until dementia hit. Once it did and your parents moved her in with you your lives changed massively to the point of now being on hold to a certain degree.
Do your parents feel the same? Do you have any siblings? How do they feel? Would your parents consider moving your grandmother into a home now?
This is your journey with the disease others will have different experiences however this doesn't make yours any less significant
I'm so glad you have found talking point, please post again and let us know how you are getting on. If you need help, advice or a rant we are here.
Thank you for sharing.

 

[Boldredrosie]

Hi All,

I just wanted to warn anyone considering moving their relative with Dementia in with them that it can be absolute hell-on-earth- don't do it!

I hear you Lisa and agree. My mother has lived with me and my son for the last ten years. I have lost my 40s and my son's childhood has been ruined. My mum and my dad went to concerts, held dinner parties, did all sorts of stuff in their 40s and 50s. We've barely been able to have anyone over to the house.

As for choice. We have no choice. I've told social services and the memory clinic I can no longer cope and do not want to look after her. Makes no difference whatsoever. So much so, I'm going to have to go to the court of protection and throw myself on their mercy to see if we can be freed of my mother.

 

[Aitchbee]

One thing I have learnt since Mum has had dementia is that each person with dementia is different and each person's circumstances are different. There is no set "right" or "wrong" way to care for someone with dementia. I always assumed that Mum would eventually go into a care home because that is what I was told would happen and she was in a nursing home for a year. In the end, we have decided to care for her at home and at the moment that is working out better for us all. Whatever decision you make in these circumstances, make the one that is right for you and your family

 

[chelsea girl]

Hi Lisa, i totally agree with you and you are brave to voice this!. My mum lives with my husband and i and our 18 yr old twins. Mum was diagnosed in 2008 but im sure had Alzheimer's a couple of years before that! My sons know no difference but i feel their childhood has been altered by the situation. We often laugh things off to them to lighten the situation but it does affect them ( one of my sons offered to pay for a weeks respite for nan as a christmas present for us ❤). Its such hard work and i sympathise completely with you. Chin up xx

 

[stanleypj]

I can entirely understand and empathise with your unhappiness at your own situation Lisa.
Your parents seem to have made a choice but, clearly, this has had a great influence on your own life. You seem to have had no say in the matter. It sounds as though you provide great support to your parents in their efforts to care for your Gran.

Do you live separately? Are your parents aware of your feelings? Have they ever even considered a care home placement? Feel free to ignore the questions if they sound like I'm prying. Just trying to get a clearer view of the whole situation.

 

[RedLou]

Oh Lisa. I applaud you for posting as it gives a useful perspective of what this can be like for younger family members who are not consulted. Or perhaps your own parents told themselves there would be no repurcussions for you. Thank you for your honesty and I hope you feel free to seek support here whenever you want to let off steam. *hug*

 

[mancmum]

My Dad lives with us

I think I want to echo the statement that dementia does differ. My father has dementia. He remains polite and is kind and caring. He just doesn't remember anything. He has one to one care. He is included in the family life. He can walk three miles, change a fuse on a plug, cut a piece of wood to fit.

But on his own he could not manage his financial affairs, his laundry, his personal hygiene,remember to turn the gas off, remember where he lives etc etc

He gets tired and does slip in and out naps.

The care we provide at the moment means he doesn't need to go into a home.
It has changed the lives of my children. And this is not intended as a comment to say you should not feel as you do because I think the impact of your parents caring is greater than my kids deal with. But they have had to grow up and become adults more quickly but then my Dad was working full time when he was 14 so their lives have been much easier than his. And my middle son got a job he enjoys as a direct result of his caring.

We don't go out to parties as much, we don't have weekends away but we do still have a life. Its not the same when they bring a new girlfriend home - there are things that need to be explained first.

If you have had enough, then you have had enough and there is nothing wrong with that but also think that you will take 'gifts' from this time. You know how to do that job of looking after someone, you can see how your parents manage to do what they do, it will help you in your relationships as you get older. You have learned about give and take and communication. You don't have to be part of the care package. I am sure your parents will miss you but if they are caring people then they will also want you to spread your wings. You are clearly kind and concerned. Look at doing some residential homecare for someone with milder dementia. Save up your money. Go abroad, work as a nanny ..the world is there for you and I am sure your parents will not hold you back. I have been able to pay for some support for us and the first person I employed was a young woman, probably younger than you, who had helped care for her father with a physical illness.