Grandad in final stages of dementia and my mum is refusing to visit

MichK

Registered User
Jun 21, 2014
9
0
Hi I am new to this forum and looking for some advice and support.
My grandad was diagnosed with vascular dementia and Alzheimer's 5 years ago. I agreed to take over his care and finances as my mum is partially deaf and I wanted to help. Since then he has been in a care home but in past few weeks he has deteriorated rapidly and is now in final stages so needs to be found a nursing home before he can leave hospital. I have been left to deal with everything on my own because my mum has decided he is already dead to her so will not discuss anything about him. Finding it really difficult looking for homes, dealing with doctors, social workers, funding and visiting him especially with my 1 and 4 year old in tow. I tried talking to her and asking for help but she just told me to stop being selfish and expecting her to see him when it hurts her too much. I understand how painful it is for her but I need some help and support, it is painful for me too. My grandads dementia nurse has offered to refer her for councelling but she has refused to even speak to him. How can I help her face up to it and help more or am I better off leaving her to it. I just don't want her to regret it all once he passes away. Any advice would be greatly apprieciated, thanks.
 

angecmc

Registered User
Dec 25, 2012
2,108
0
hertfordshire
Hi firstly can I say what a wonderful caring Granddaughter you are, your Grandfather is so lucky to have you. I am sorry you are having to deal with so much on your own. Some people just can not or will not be involved in this sort of situation, I think you have tried your best to get your Mum to be involved in her fathers care, it will be on her conscience, not yours so I would say let her worry about that, I have a brother like her who will not do anything to help our Mother, she is heading rapidly towards her final stage I believe, I have given up trying with him now as it is too exhausting and I like you have enough to deal with. Put all your efforts into being there for your Granddad and from someone who is a Mother, I would like to tell you how proud I am of you, take care xx

Ange
 
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starryuk

Registered User
Nov 8, 2012
1,323
0
Finding it really difficult looking for homes, dealing with doctors, social workers, funding and visiting him especially with my 1 and 4 year old in tow.

Not 'really difficult' but just about impossible to do it all I should think. You must be at the end of your tether. I agree that if your mum will not involve herself, then don't keep trying for the moment. Just deal with the absolute necessities.

Please, anyone with experience correct me, but I was under the impression that the hospital should be doing more to find your grandfather a suitable home. After all, they want to discharge him presumably. It seems unfair that you have to do all the work. I just can't imagine how you are holding it together while looking after your two little ones at the same time.
Much sympathy xx
 

Katrine

Registered User
Jan 20, 2011
2,837
0
England
I agree with others, it is a waste of your emotional energy to try to get your Mum involved. Could she help you with babysitting? Or would that be selfish as well? :rolleyes:
 

MichK

Registered User
Jun 21, 2014
9
0
Thank you for your kind words, glad I am not the only one with family struggling to cope and not wanting to be involved. It is causing alot of stress at home too because I am feeling the pressure and my husband is getting angry on my behalf and I won't let him speak to my mum. Social services can locate a home themselves but it will be one nearest to the hospital he is in and as that is a 40 minute drive away I am trying to get him into one of two nursing homes closer to home so visiting will be easier especially as we are nearing the end and I want to be as close as possible. Actually quite shocked at how many care homes and nursing homes do not have EMI units, I am in a fairly large town with 14 homes around it, only 3 have EMI units with only 2 having nursing too. Surely more are needed as every one I have spoken to are short on space even out of town.
Relieved to have a fantastic dementia nurse who has helped relieve financial worry by helping me apply for fully funded on going care allowence.
I have suggested my mum just babysit if she can't face anything else but she won't even do that because she does not have time.
I am sorry your mother is not doing great Ange and hope you find some support too, my thoughts are with you. I do have some fantastic friends but sometimes you just want support from someone dealing with the same as you to talk to. Hopefully (I have everything crossed!) I will have a room in place nearby by the end of the week and that will relieve some of the stress.
Thank you all again, Michelle xx
 

Wolfsgirl

Registered User
Oct 18, 2012
1,028
0
Nr Heathrow, Mum has AD & VD
So sorry with all you have to deal with, it must be so very hard but it will get resolved ultimately.

Your poor Mum is not behaving normally because she is in a situation she cannot cope with and has the 'luxury' (it is not a luxury) of being able to rely on you. I suggest you forget her, I don't mean forget her, just don't expect anything from her and you won't be disappointed.do your very best as that is all you or any of us can do for our loved ones.

Please keep posting, cyber hug to you x
 
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jawuk

Registered User
Jan 29, 2014
260
0
Lutterworth, Leicestershire
So sorry with all you have to deal with, it must be so very hard but it will get resolved ultimately.

Your poor Mum is not behaving normally because she is in a situation she cannot cope with and has the 'luxury' (it is not a luxury) of being able to rely on you. I suggest you forget her, I don't mean forget her, just don't expect anything from her and you won't be disappointed.do your very best as that is all you or any of us can do for our loved ones.

Please keep posting, cyber hug to you x

I'm sorry that this may seem harsh, but this may be the time - given that it isn't Mum who is ill - for her to receive some straight talking. Dad is the patient and daughter is the one doing it all, perhaps Mum needs to have a few things clarified.

For Mum to say that Dad is 'dead to her' appals me. Obviously she can't be dragged along to visit but I definitely think that the kid gloves should be off.
 

Katrine

Registered User
Jan 20, 2011
2,837
0
England
It sounds as if she is angry with him, whether for getting ill, or for failing to conform to what she needs her father to be, or maybe even for something way back in the past. Her behaviour is not normal. IMHO I don't think straight talking would result in anything other than more distress for Michelle, who will just get blamed for 'selfishly' upsetting her mum.

I would say - choose your battles - only fight the ones you are likely to win. It would seem that her mum is 'too busy' to do anything for the family, so it's probably easiest to let sleeping dogs lie. If she's out of contact she's not there to complain about herself, so there is an up side. So sorry though, Michelle, we all want our mums to support us, and it is bitterly painful if they do not, or cannot.
 

MichK

Registered User
Jun 21, 2014
9
0
After an upsetting visit to the hospital last night I attempted 1 last time to get through to my mum. It did not go well and I doubt she will actually face up to it until he is no longer here. I am due to go the hospital today to have a meeting with his care team this morning but I can't face it on my own so going to see Iif I can reschedule to this afternoon and get my husband to come along after work and leave the cchildren with our child minder.
My mum is really angry at everything and throughout his illness has blamed everyone, my nan, myself, carers, doctors and anyone else who has been around while he has been ill. It cannot be easy for her feeling so angry and she needs some help but I cannot do it at the minute so going to take a step back with her and when she is ready to deal with it all I can then help. I think wolfsgirl is right and if I don't expect anything from her then I won't feel so let down by her. I am going to ask for a referral to a councellor foe myself today and see if they can help with the grief.
 

jawuk

Registered User
Jan 29, 2014
260
0
Lutterworth, Leicestershire
After an upsetting visit to the hospital last night I attempted 1 last time to get through to my mum. It did not go well and I doubt she will actually face up to it until he is no longer here. I am due to go the hospital today to have a meeting with his care team this morning but I can't face it on my own so going to see Iif I can reschedule to this afternoon and get my husband to come along after work and leave the cchildren with our child minder.
My mum is really angry at everything and throughout his illness has blamed everyone, my nan, myself, carers, doctors and anyone else who has been around while he has been ill. It cannot be easy for her feeling so angry and she needs some help but I cannot do it at the minute so going to take a step back with her and when she is ready to deal with it all I can then help. I think wolfsgirl is right and if I don't expect anything from her then I won't feel so let down by her. I am going to ask for a referral to a councellor foe myself today and see if they can help with the grief.

I do very much hope that you are able to get the meeting timed so that you don't have to deal with it alone.

In regard to my previous comments, I'm sure that you are taking the right course for you as you know your family dynamics better than I - it's just that I felt so cross with your mother on your behalf, as I do for others here who are castigated and abandoned by their 'invisibles'.

It does strike me from what you say above that even if your mother is ready to 'face up to it' after your Granpa's passing she may well still blame others. If that is the case then I do hope that you can look to protect yourself before you try to help her deal with any issues arising from her long term attitude towards her father's illness.

One of my mantras is that choices carry responsibilities and unless your mother is herself ill then..........

Whatever way it goes with her, I wish you the best if luck. x
 

angecmc

Registered User
Dec 25, 2012
2,108
0
hertfordshire
Wishing you all the best for your meeting, good idea to try for that councelling. You are taking the right approach with your Mum, she is lucky you are so willing to leave the door open for her, but you must when the time comes put yourself and your own family first. My advice would be to just point your Mum in the right direction and let her get on with sorting out her own grief when the time comes. Best wishes to you xx

Ange
 

marsaday

Registered User
Mar 2, 2012
541
0
Mich k, Sorry to hear about you r situation.

I just wanted to mention something that no-one else has yet. If your Dad is near the end, it may be that an ordinary/general nursing home will accept him. I say this because I just moved my Mum from EMI nursing to general nursing to be nearer me as she had gone downhill physically. It was a good decision and they are coping well with her needs.
Also when my FIL was at the end and being released from hospital they said we could look at general nursing as his physical needs had overtaken dementia needs.

As long as they are not mobile or causing disturbances this usually works out ok.
 

MichK

Registered User
Jun 21, 2014
9
0
Hi Marsaday we were hoping that would be the case but in the past few days he has had a couple of hours of awake periods where he has been up searching for rabbits underneath his bed and been very violent so they still want him to go to a dementia unit. Unfortunately the local homes do not have suitable rooms so I am now having to look outside the area. My meeting with his care team is on hold until I have visited a few. Its made it even more difficult now but he cannot stay in hospital and is staying on a waiting list for the local homes so hopefully he can move again shortly. Sorry to hear your mum has gone downhill it really is the hardest thing to watch.
 

Victoria26

Registered User
May 20, 2014
10
0
I feel for you. I am my Mums only close relative and so all is down to me so I totally understand how difficult this must be for you. I have a 3 and 5 year old and am nearly 7 months pregnant. What I don't have though is the stress that you Mum must cause you, especially if she refuses to access some help. Thinking of you.xxx
 

MichK

Registered User
Jun 21, 2014
9
0
Actually having a nightmare of a time trying to find a nursing home. My grandad is still in hospital because even the homes with EMI nursing are reluctant to assess him, 3 have told me they are willing to assess in past week yet hospital have then informed me that they are not coming out as they are not able to offer him anything. Frustrated!
On another note he now has continuing health care funding so not got to worry about bills once we find somewhere. Really hoping it is soon though because he has had all medication stopped except for pain relief so would really like him to be closer to me so I can spend more time with him instead of traipsing round homes.
Victoria I feel for you I do not know how your managing with small children and being pregnant. My thoughts are with you too xx
 

angecmc

Registered User
Dec 25, 2012
2,108
0
hertfordshire
Actually having a nightmare of a time trying to find a nursing home. My grandad is still in hospital because even the homes with EMI nursing are reluctant to assess him, 3 have told me they are willing to assess in past week yet hospital have then informed me that they are not coming out as they are not able to offer him anything. Frustrated!
On another note he now has continuing health care funding so not got to worry about bills once we find somewhere. Really hoping it is soon though because he has had all medication stopped except for pain relief so would really like him to be closer to me so I can spend more time with him instead of traipsing round homes.
Victoria I feel for you I do not know how your managing with small children and being pregnant. My thoughts are with you too xx

Sorry to hear you are having such a tough time finding a nice home for your poor Dad, you are right, it is unfair that you are having to spend precious time looking round homes when you should be able to spend that time with your Dad, I don't see why Social Services can't help you more. Glad you got chc xx

Ange
 
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carastro

Registered User
May 7, 2012
115
0
To be honest, I think the social workers are expecting far too much of you. I know in the past they have found places in Nursing Homes on behalf of family, so what would happen if you did nothing?

Answer: The hospital will be desperate to discharge him and the social services will find him a place in a home anyway, but the risk here is that it might be on the outskirts of your borough.

I was asked to run around to find my mum a place in a nursing home last year and they said if I didn't find one quickly they would discharge mum to any nursing home that had a vacancy but that it might not be one of my choosing.

Just a thought.

Carastro
 

MichK

Registered User
Jun 21, 2014
9
0
Hi all quick update, my grandad went into a nursing home last week and I was really worried because it is a good 30 minute drive away but after seeing the massive improvement in him all my doubts have vanished. The staff are fantastic and he looks like a different man! He has been on liquid feeds for around 6 months now yet is now eating full meals by himself! He has been almost completely bedridden for nearly a year but they are encouraging him to walk with a zimmer. He is obviously very poorly still and is no longer on his heart medication but he is happy and the staff are encouraging as normal a routine as possible. He is interested in whats around him rather than cut off from it. Actually feel like a weight has been lifted and I can enjoy spending whatever time he has left without the stress. Thank you all for your kind words and support. I will keep you all updated X
 

handyjack

Registered User
Oct 6, 2011
151
0
Mich, glad you've found a nursing home for your grandad. I hope you don't think bad of your grandmother for her reaction to this horrible situation. You say your grandad was diagnosed 5 yrs ago, so who only knows what your grandmother might have had to put up with before the diagnosis. I work with people suffering from dementia, and at least at the end of a shift I can go home and relax (don't always switch off though) . I can see from your previous posts, you've put yourself out for him, an admirable thing , for which you should be respected. ;););)

Yep a good care/nursing home, should bring out the best in your grandad. Hospitals can only do so much (and tend to concentrate on the medical aspects of dementia, instead of the individual,, something I'm sure should be addressed, but in these austere times, I'm sure nothing will change)
 
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