Just had my dad come to live with us he has Mixed Dementia

[loopylyn53]

It was becoming apparent through daily phone calls that my dad was not looking after himself, so we decided to move and have him come to live with us. I will manage.... but I just feel so overwhelmed! I did not realise he was as bad as he was, in actual fact I am not entirely sure what "mixed dementia" is. He has been with us for a month now and his physical appearance is better by 100 percent, but I feel that I have no time for me.... Does that sound selfish? From 5.30 in the morning to 11pm at night it is constant care, we only moved in here 6 weeks ago and there is still so much to do. It just feels good to vent all of this with people that understand what it is like. I don't know who to talk to or who to contact for advice.

 

[Neph]

Social services might be the first step if you haven't talked to them before, at least to get you some help so that you can have a break. There could be day centres in your area that your dad could go to which would give you a break.

Try to look after yourself even if it's only a little half hour break with a cuppa and a book or something if he's having a nap.

Sending you a big hug x

 

[Ann Mac]

Hi Loopylyn - you are where I was, 9 months ago Mil (mum in law, also with mixed dementia - in her case it means she has both Alzheimers and vascular dementia) moved in, and I was so stunned by just how bad she was, and how much support she needed, even then. I've felt so guilty at times for not making the move sooner - especially as she has continued to deteriorate at a rapid rate. And no, you really do not sound selfish - it is completely overwhelming and exhausting coping with supporting someone, 24/7 when they have dementia x

Please, please, contact social services, your Local Authority, and set up day care at least - Mil goes 3 days a week, for 4 hours each day, and on top of that, she has support workers who collect her from day care and who take her out and about for a further 2 hours - its 18 hours a week that I really could not cope without - i need that break so I have the strength and the reserves to cope with the rest of the week, when I am her main carer, and solo for a good bit of the time

Neph is right - you have to try to look after yourself too xxxx

 

[jaymor]

Hello Loopylyn and welcome to the forum.

You really have taken on so much in one go, a house move and having home Dad come to live with you. No wonder you feel so overwhelmed by it all

Contact social services and ask for an assessment for your Dad and one for yourself as a carer. They should then have some ideas as to what your Dad needs and how best to help you care for your Dad. Remember shout loud they tend to be a bit deaf at times. There are day centres and if your Dad is a bit put off by the name day centre then call it a club.

Caring all day gives you no time to sort out your new home and for you to be comfortable you need to do the sorting.

Take care and set the wheels in motion re SS. There are also meeting arranged by Alzheimer's Society and the Carer's society where you can meet others who care and enjoy a bit of social time. Cared for can also attend if they cannot be left.

Jay

 

[loopylyn53]

Dad with Mixed dementia

I'm having a little weep here.... can't believe that some of you have responded so quickly! Thank you all so much you don't know how that makes me feel (not alone). I can see that this site is going to become a vital lifeline for me.

Thank you

 

[Tin]

It was becoming apparent through daily phone calls that my dad was not looking after himself, so we decided to move and have him come to live with us. I will manage.... but I just feel so overwhelmed! I did not realise he was as bad as he was, in actual fact I am not entirely sure what "mixed dementia" is. He has been with us for a month now and his physical appearance is better by 100 percent, but I feel that I have no time for me.... Does that sound selfish? From 5.30 in the morning to 11pm at night it is constant care, we only moved in here 6 weeks ago and there is still so much to do. It just feels good to vent all of this with people that understand what it is like. I don't know who to talk to or who to contact for advice.

I too came to this site very recently, similar story to yours with my mother 5 months ago. I became so overwhelmed with it all, frightened and confused. finally plucked up the courage to join, the kindness of strangers has touched me deeply, on a daily basis I dip in and out of the site, it helps me to cope with it all. as yet I hav'nt been able to convince my mum about daycare club, but i'm still trying and one day, hopefully this summer it will happen.

 

[loopylyn53]

Just knowing someone is there going through the same things is invaluable.... I know for a fact that I will never get my dad to a "day club", but I will look into getting some sort of respite care even if its only a half day a week!! I am going to contact social services today. You are all wonderful and I am so glad to have become one of the "family"

 

[loopylyn53]

Thank you Neph, greatly appreciated xx

 

[loopylyn53]

Hearing Aids!!!

What is it with the elderly and hearing aids? I have had a heck of a time trying to get my dads sorted, we are now at the stage of waiting for his ears to be syringed on Friday so that we can go back to the hospital to have another hearing test. But he fixates on things and have been putting drops into his ears since Friday to soften the wax ready for the syringing on Friday so thought we would try the hearing aids again yesterday and he said they were working, now today all of a sudden they aren't... I give up....

 

[marionq]

Don't dismiss the idea of daycare out of hand. All you need is someone to mention it to him as a great idea whom he likes. My husband has been asked by several people he meets if he would like to go to a day centre and although he is not quite there yet he has shown an interest. Maybe next year.

 

[Wolfsgirl]

Perhaps don't call it a day centre, call it 'lunch or social club' instead?

Don't dismiss the idea of daycare out of hand. All you need is someone to mention it to him as a great idea whom he likes. My husband has been asked by several people he meets if he would like to go to a day centre and although he is not quite there yet he has shown an interest. Maybe next year.

 

[Nebiroth]

"Mixed dementia" simply means that a person has more than one disease mechanism at work.

"Dementia" is really a name of symptoms, it is not actually a disease in itself - it actually translates as "de-mentia - without mind". Confusingly, some disease that cause dementia has dementia in their names and this is often because the name simply means "dementia of cause xxxx"

It is possible for a person to have more than one of these diseases, since having one form does not preclude developing another.

By far the most common diseases are Alzheimer's Disease and Vascular Dementia (this is simply dementia causes by problems with blood supply to the brain, usually, the small vessels).

Therefore, most people with mixed dementia have Alzheimer's and Vascular. The other causes of dementia are much rarer.

Both of these diseases are usually diagnosed simply by looking at the patient's symptoms and, importantly, how those symptoms progress over time. There is no definitive test - things like blood tests are simply used to rule out diseases that can mimic such symptoms (such as a vitamin deficiency), because these are treatable. Brain scans can sometimes help to diagnose vascular disease.

In the early stages both of these diseases cause very similar symptoms and it can be very difficult to distinguish between the two. However, they normally progress in different ways: Alzheimer's as a steady and often slow decline; vascular by sudden declines, which can be severe, with periods of relative stability in between. These declines tend to be unpredictable.

Thus if someone is showing a progression pattern that shows features of both diseases, they are presumed to have "mixed" dementia.

The other diseases are, as I said, much rarer and tend to have distinctive symptoms and patterns of progression that mark them out - but it is still possible to get, say, Lewy Body disease and Alzheimer's.

The risk of both Vascular and Alzheimers rises dramatically with age; Alzheimer's is very rare (though not impossible) for people under 60 and most people tend to be over 80. It is predominantly a disease of the elderly.

 

[loopylyn53]

Thanks for the encouragement M, really appreciated xx

 

[loopylyn53]

Thank you for the detailed explanation of the disease... I suspect that my dad who is 91 in September has the Alzheimers and vascular as he has an irregular heart beat. It helps to know what to expect. When he moved in 4 weeks ago about 4 days later we had a problem getting him to walk he just couldn't get his left leg to move I could see him trying and I said to my husband later that I thought he could have had a mini stroke then. He soon recovered and is well at the moment. As the doctor said to me when I registered him with my GP, there's not a lot they can do, its just a case of general care and a lot of TLC..... This site is a godsend

 

[Margaret79]

My MIL lives with us although we are lucky in that she has a self contained detached annexe. She tried day centres but when I got called to go and collect her after an hour when she tried her third one we gave up!

We do have someone from Crossroads for 2 hours twice a week to sit with her or take her for a walk but apart from that we're on our own.

It is very hard work and some days I do regret it. My Husband & I haven't had a break together for almost 4 years but are now looking into respite again. She hated it before but this time I'm afraid she'll just have to put up with it. The best advice I could give you would be to make sure you get regular breaks. Good luck, keep posting. xx

 

[Wildlife]

Hi Loopylyn. I just wanted to add to the voices urging you to get in touch with Social Services to ask for an Urgent Review of your Dad's care needs and of your own too. You can't keep working an 18 hour day caring for him without some sort of respite.

Hubby & I moved 3 1/2 years ago to take in my mother who has Alzheimers (who was also much more confused than we previously realised) and we can only cope with the 24/7 nature of caring because we get regular breaks when she goes to a Day Centre and whole weeks off, when she goes in a Care Home. I know the care there might not be to my standards, but we decided that we are entitled to a life too. You need to look after yourself as well as your Dad.

 

[loopylyn53]

Hi Wildlife, thanks for your comments, it has definitely been a baptism of fire, and my husband reckons we got him in the nick of time. Its just so "all consuming" everything is planned around dad. Its not his fault, bless him, but it makes me think I can't keep this up forever. I don't think hubby quite understands because to him nothing has changed. Meals still prepared, housework still done, washing, ironing, well you know what I mean, but I keep thinking I can't go on at this rate, so I am going to look into maybe getting someone in one day a week so that I can go out. But then again I don't think I'll have the energy!! lol One thing is for certain I will never let things get to this stage if I am ever diagnosed with Alzheimers.

 

[FifiMo]

Hiya Lyn,

Have a look at this organisation as they will often provide a sitter for you so that you can get some free time to yourself. http://www.carers.org/merger

Might sounds stupid but next time you're at the GP have a look on their noticeboard. In ours they have a list of free 'treats' that a carer can make use of in the area. I got a surprise when I saw the notice in our surgery as I didn't know such things existed. So tired you might be, but having somewhere to go for a couple of hours to relax might help you too.

I am not sure why you have said that a Day Care wouldn't work, but if there is one available in your area then I would not turn it down. Even with protests about going, in my experience, once they are there they can really enjoy themselves. If it is because no facilities are available then I would be asking for some extra hours care from somewhere to compensate!

Fiona

 

[Nebiroth]

Many elderly people get arrythmias of the heart; this is sometimes in the form of a relatively steady beat but where beats are skipped. It can be harmless but only a doctor can determine this, usually via a ECG (electrocardiogram) machine. This records the heart action as a trace so that the regularity and other features of heartbeat can be determined. Irregular beats can range from harmless to life-threatening, and treatments range from ignoring it to having to have a pacemaker fitted. Arrythimias include irregular beats, as well as a heartbeat that is abnormally slow or fast.

My mother has had benign arrythmia for many years and we have been told it is completely harmless.

Vascular dementia relates to blood supply problems to the brain and usually involve the small vessels.

TIA's, Transient Ischemic Attacks, are also related to blood supply to the brain. In essence, a TIA is a temporary condition in which the brain temporarily receives insufficient supply of blood, and therefore oxygen.

A TIA can and often does have identical symptoms to a stroke - however a TIA is usually brief and has no obvious, permanent effects.

However, it is absolutely vital that if anyone shows signs that might indicate a stroke - such as difficulty moving one side of the body, arm, leg, face or whatever - that the emergency services be contacted immediately. Even if they have a history of TIA's or "funny turns". This is because it could well be a stroke and the sooner this is treated the less damage is done. Do NOT wait to see "how things go".

TIA's are sometimes warning signs of an impending full stroke

 

[loopylyn53]

Hi Fi,,

Its difficult to explain but my dad has never been of the "sociable" type and struggles in company so it would be torture for him, however in his own environment he will tolerate someone else and is not too bad. I will take your advice and have a look in the surgery on Friday when I take him to get his ears syringed... Thanks