I am new to this forum. I need advice- my 55 year old sister has been living with me for 7 months. She lived in a different part of the country for 30 years but we remained close and were a part of each other's lives. I noticed 3 years ago that she was having some problems but I thought it was due to stress. In March of 2018 my husband of 32 years suffered cardiac arrest and my life changed in an instant. When my sister came for the funeral there was something very wrong with her. i was stunned at her dramatic weight loss and kept her with me for 6 weeks until I foolishly let her return home after her 25 year old daughter promised that she would find out what was happening. Needless to say, she tried a few visits to doctors but no diagnosis. In September of 2018, my niece put my sister on an airplane and said I could "deal with it". I have a diagnosis now: frontal temporal lobe dementia. I am struggling to balance 2 jobs, scheduling friends and family to be with my sister while I cannot. My 3 sons are exhausted and worried that my health will fail and they will lose my as they have just lost their father. I love my sister and my heart aches for her. Please help me, how do I do this?
Caring for my sister
- Thread starter Dottie82559
- Start date
Welcome to the forum @Dottie82559. I'm so sorry to read about your situation but I'm glad you found TP.
I wondered if you gave any support out with the family for your sister. If you haven't already done so it might be useful for you to arrange a care needs assessment. This fact sheet gives some information on the process-
https://www.alzheimers.org.uk/get-s.../dementia-care-needs-assessment#content-start
You can also ask for a carers' assessment for yourself - https://www.alzheimers.org.uk/get-support/legal-financial/carers-assessment#content-start
It might also be helpful to look for what's available locally in the way if day centres etc. You can do a search using the link below. I do realise however that it might be more difficult to find something suitable for your sister as she is so young.
https://www.alzheimers.org.uk/find-support-near-you
Again I'm glad you've found this forum and I'm sure you'll find lots of help and support here.
I wondered if you gave any support out with the family for your sister. If you haven't already done so it might be useful for you to arrange a care needs assessment. This fact sheet gives some information on the process-
https://www.alzheimers.org.uk/get-s.../dementia-care-needs-assessment#content-start
You can also ask for a carers' assessment for yourself - https://www.alzheimers.org.uk/get-support/legal-financial/carers-assessment#content-start
It might also be helpful to look for what's available locally in the way if day centres etc. You can do a search using the link below. I do realise however that it might be more difficult to find something suitable for your sister as she is so young.
https://www.alzheimers.org.uk/find-support-near-you
Again I'm glad you've found this forum and I'm sure you'll find lots of help and support here.
Hi @Dottie82559 I am not sure what the answer is to this but I can tell you that you are not responsible for your sister and that is not your duty to care for her either. It appears that her daughter does not want the responsibility either.
However much you love your sister, this situation will only get worse and you really need some help now before it does get worse. Others who have reached this point will hopefully be along to give you some advice soon as I have little experience of FTLD
Does anyone have POA for your sister as this is important for the future.
Sorry that you have had to come here and please keep posting as it is a good site with lots of friendly and helpful people.
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dthank you so very much for your reply.
Thank you so much for your reply. I did obtain medical and financial POA for my sister just last week. Her finances were a mess and I was paying her bills for her online and was fearful that I would get into trouble fixing these matters if I didn't do so with legal power. I am so afraid that she will hate me for placing her in a care home. I found one that is a maximum of 65 residents with a totally secure building. It is new and quite beautiful. How do I take her there and what do I say?
Thank you so much for your reply. I did obtain medical and financial POA for my sister just last week. Her finances were a mess and I was paying her bills for her online and was fearful that I would get into trouble fixing these matters if I didn't do so with legal power. I am so afraid that she will hate me for placing her in a care home. I found one that is a maximum of 65 residents with a totally secure building. It is new and quite beautiful. How do I take her there and what do I say?
That's good that you have the POA so at least you can pay her bills and the care home if she is self funding.
As for your sister hating you, well she may not be happy about it at but that is because of her dementia. She won't see what is happening to you and your family because she probably thinks everything is fine.
Please don't feel guilty, you have done your best and you can do no more. Your sister is only 55 and this could go on for years and it will wear you down and she could even out live you. Your sons sound lovely and are thinking of you and your health.
My dad is still in his own home but I have read other posts and it seems that a bit of subterfuge is often used to get the person into the home. Some people say it's for a short break or they need to do some work on there own home and have to move out for a while. I think it is unusual for someone to go voluntary.
You are doing the right thing and you will still see your sister and care for her, just not full time. I think your sons will be very glad to see you back to some kind of normality.
Keep reading other posts as you will find loads of information on here.
Im so sorry to hear about your sister, she is so young to get dementia.
Is she still quite aware? As it is a beautiful care home, you might like to describe it as a holiday in a nice hotel (dont say that it is permanent). My OH who is 63 yrs old and has FTD symptoms (no diagnosis yet) has just come back from respite. I "sold" it to him as a little break in a hotel with nurses and he was very happy there.
Is she still quite aware? As it is a beautiful care home, you might like to describe it as a holiday in a nice hotel (dont say that it is permanent). My OH who is 63 yrs old and has FTD symptoms (no diagnosis yet) has just come back from respite. I "sold" it to him as a little break in a hotel with nurses and he was very happy there.
I agree with Canary, tell your sister she is going for a break, don't mention the words 'care home' or tell her it is permanent. Think about what story you can tell her which will work best to limit the distress for both of you. That is what I did for my mother when I moved her to a care home last year. She was confused and distressed for the first couple of weeks but never seemed to blame me for it. She then settled in really well and tells me she loves it there.
Hello Dottie. What a lovely caring sister you are. And what lovely sons you have to be so concerned for you health x
When the decision was made for mum to go into care I told her that it was to let her recuperate and get strong. Whilst she would often ask to go home I would say " The doctors think a little longer would be best". Eventually the "I want to go home" ceased.
I found it hard to lie to my mum at first but someone on here called them "Love Lies" - you simply lie for their best interests and that helped me
Please continue to post on here because you will find nothing other than support, kindness and understanding but most of look after yourself. You are important xx
When the decision was made for mum to go into care I told her that it was to let her recuperate and get strong. Whilst she would often ask to go home I would say " The doctors think a little longer would be best". Eventually the "I want to go home" ceased.
I found it hard to lie to my mum at first but someone on here called them "Love Lies" - you simply lie for their best interests and that helped me
Please continue to post on here because you will find nothing other than support, kindness and understanding but most of look after yourself. You are important xx
