Feeling totally broken

[Mickeymarley]

A few years ago, I had it all. A lovely family,a great husband, 2 amazing kids, a job, a loving and kind mum and dad who were my best friends and my world. Everything was great. Then 2 years ago, after a period of feeling my mum was depressed we were given the devastating news that mum had Alzheimer’s. She was in her early 70s. She was beautiful. She was my kids wonderful nanny. She was everything to me. I was initially shocked, I didn’t believe it could be real. They must have got it wrong. Then suddenly, almost as if her diagnosis had unlocked something in us all, it was blindingly obvious that mum had this horrific disease. I will never forget my dad calling me, flustered and breathless. “ your mum didn’t recognise your brother today”he said. It hit me like a slap in the face.The months that followed were simply hideous. Mum was scared, aggressive, hallucinating, hearing things, imagining things, Calling the police as an intruder ( my dad)was in the house. I lost count of how many times he called me from the car in their driveway having been thrown out again. It was becoming unbearable. We didn’t know what to do. This was killing him. At 80 he was worn out. Then continence became an issue and this finally broke my dad. He knew he couldn’t handle it anymore, nor did we want him to.
So we put mummy in a care home. This decision, although it was the only option we had, Has literally broken me and the rest of our family. The sadness and guilt we feel is never talked about, we all pretend we think it’s for the best but it is killing us all. We can’t say anything though as we know dad simply can’t cope. Mummy is fading away daily. I live far away so travel every couple of weeks to see her and I feel it’s really affecting my own family life. My husband is left with the kids for long stretches as a time as I embark on these endless lonely and heartbreaking visits. My sister has fallen out with me as she is left with it all. Nothing is do is good enough in her eyes. My brother visits but he is more practical and isn’t as emotional about it all. I am suddenly very alone. I now feel I need to give up work as I want to see more of my own kids, who get very upset each time I leave. I literally feel my life is crumbling around me and the person I need to talk to, the only one who would understand, isn’t there anymore. I miss her so, so much. I hate this disease with every inch of my being. The bleakness of this situation is grinding me to a halt and I don’t know what to do.

 

[try again]

Just want to acknowledge your post and don't have much to say being a newbie here myself. It's all really difficult and this is a diamond of a place to share your feelings. Take care of yourself and try to rest.

 

[Norfolk Cherry]

This is so sad. You sound like a close loving family and your mum would not want this to affect you in this way. From here it seems as if some sessions with a councillor might help you to come to terms with what has happened. It might give you some strategies to deal with the change, and provide some release for your feelings which you are unable to express. Take care and don't make any big decisions until you have talked to someone with experience in this area.

 

[Izzy]

Good morning @Mickeymarley and welcome to the forum.

I'm so sorry to read about your situation. You sound like such a loving and caring family but it must be extremely hard for you all. I'm glad you've found TP as there will always be someone here to listen. I hope it helps a little to be able to share your feelings here.

As has been suggested counselling might help you. Perhaps an initial visit to your GP to talk things over could start that ball rolling.

It might help also you further to have a chat with someone on the Helpline.

https://www.alzheimers.org.uk/get-s...55.1769454811.1519233588-549088353.1488398070

National Dementia Helpline

0300 222 11 22

Helpline opening hours:

Monday to Wednesday 9am – 8pm

Thursday and Friday 9am – 5pm

Saturday and Sunday 10am – 4pm

Please keeping posting here too.

 

[karaokePete]

Hello @Mickeymarley, you are welcome here and I hope you find the forum a supportive place.

TP is a great place to vent feelings among people who understand so I hope that you will keep posting..

 

[Mickeymarley]

Thank you everyone for your kind words. Just knowing someone who understands is listening, really helps a lot. I never really thought that I may need some counselling, but perhaps that is exactly what I need. Thank you.

 

[nae sporran]

Welcome to TP from me too, Mickeymarley. Can't add anything to what has already been said except support and empathy with your awful situation.

 

[Hazara8]

A few years ago, I had it all. A lovely family,a great husband, 2 amazing kids, a job, a loving and kind mum and dad who were my best friends and my world. Everything was great. Then 2 years ago, after a period of feeling my mum was depressed we were given the devastating news that mum had Alzheimer’s. She was in her early 70s. She was beautiful. She was my kids wonderful nanny. She was everything to me. I was initially shocked, I didn’t believe it could be real. They must have got it wrong. Then suddenly, almost as if her diagnosis had unlocked something in us all, it was blindingly obvious that mum had this horrific disease. I will never forget my dad calling me, flustered and breathless. “ your mum didn’t recognise your brother today”he said. It hit me like a slap in the face.The months that followed were simply hideous. Mum was scared, aggressive, hallucinating, hearing things, imagining things, Calling the police as an intruder ( my dad)was in the house. I lost count of how many times he called me from the car in their driveway having been thrown out again. It was becoming unbearable. We didn’t know what to do. This was killing him. At 80 he was worn out. Then continence became an issue and this finally broke my dad. He knew he couldn’t handle it anymore, nor did we want him to.
So we put mummy in a care home. This decision, although it was the only option we had, Has literally broken me and the rest of our family. The sadness and guilt we feel is never talked about, we all pretend we think it’s for the best but it is killing us all. We can’t say anything though as we know dad simply can’t cope. Mummy is fading away daily. I live far away so travel every couple of weeks to see her and I feel it’s really affecting my own family life. My husband is left with the kids for long stretches as a time as I embark on these endless lonely and heartbreaking visits. My sister has fallen out with me as she is left with it all. Nothing is do is good enough in her eyes. My brother visits but he is more practical and isn’t as emotional about it all. I am suddenly very alone. I now feel I need to give up work as I want to see more of my own kids, who get very upset each time I leave. I literally feel my life is crumbling around me and the person I need to talk to, the only one who would understand, isn’t there anymore. I miss her so, so much. I hate this disease with every inch of my being. The bleakness of this situation is grinding me to a halt and I don’t know what to do.

Dementia is in a way, unique, in as much as it plunges both the one living with this disease and those who are carers, or are close as family, into what appears to be an impossible situation. We, as sons, daughters and so on, are terribly vulnerable when we have that fundamental attachment to a parent, especially to a mother. That relationship embraces profound feelings, borne out of a life which stems from birth. Is it any wonder then, that this separation results in such pain, anxiety, regret, a sense of helplessness? A separation which is beyond your control? You, nor your mother can continue a fraught and perhaps unbearable existence at home, subject to all the harsh, unpredictable behaviours which can come about in someone whom you know and have known in another guise. In a way, a 'stranger' enters the family by way of the dementia inhabiting a loved one, a mother, controlling and manipulating them in a way which seems to oppose all the normality which has gone before. Such is dementia. No one's fault. Nor a disease which is perceived in the way of other diseases, cancer and all. It is an immense challenge and can tear the very heart out of people who care, who love, who strive to do all they can in addressing their own specific situation.

If the Home were closer, that would alleviate some of the angst you are clearly feeling. Those drives to a Home, to see a loved one, can be very trying. Your mind constantly picturing what might be, or what has been. What will be the reaction when I enter the room. Is she upset? Does she long to be elsewhere. All of these questions are totally understandable. Yet, dementia - Alzheimer's - does have an ironic 'plus' in respect of our anxieties, our pain.

In the Home (where I work) the residents, almost without exception (ranging through varied dementias and neurological presentations) function, day to day, in a world which belongs to them. Albeit, perhaps in a past world of long-term memory, it remains the 'real' world for them. And when family visit, that world can be disrupted, temporarily, i.e. you can see initial signs of awareness, the here-and-now taking place. So when family depart, there can be brief upset, but I do not witness this as a rule. I DO witness an environment whereby the residents living with their respective dementias, live their lives within that 'other world' without the kind of angst that we as carers, or say daughters will have as a constant. In effect, we as sons or daughters of say a mother (my own case) live with a continuing anxiety based upon what we THINK our loved one is feeling, undergoing etc., For the most part, I have learned, this is not the case.

But I do not dismiss the reality of a situation which ruptures the norm of a family structure. It can be very, very hard to come to terms with. Nevertheless, hold onto the fact that these situations are unavoidable. Alzheimer's at its worst, at home, can be horrific. I know this.
A Care Home becomes a kind of haven for both parties in such cases. The visits can become positive and uplifting when the 'positives' of best interests are truly seen. And the love which exists between a mother and daughter has no boundaries, nor compromised by distance, cannot be harmed by any dementia, by nothing in fact. That love is free from all that and is truth. Hold onto that fact and the mist of despair should gently clear and the 'bleakness' melt away, for all the right reasons.

 

[Oh Knickers]

Hi Mickey Marley,

Sorry to hear that things are being so tough. Dementia, in all its forms, is a tough, unforgiving, exhausting beyond endurance and totally thankless road for all those involved. I can see where your sister is and I can see where you are. It sounds as though your sister is just plumb worn out.

Whilst your sister is worn out it is hard on you that you live so far away. However, this sometimes is how life is. Take time, counselling will help. You and your sister will be approaching the grief in different ways. Whilst you appreciate the stress your sister is under, you have your own family responsibilities. It is getting to the stage where you can see the way through this devastating and challenging situation. Giving up your job, leaving your husband and children is possibly not the best solution.

You have the Alzheimer helpline given above. There is also a link to the local Alzheimer Society local helpline below. They will have a huge amount of local knowledge that you and your siblings can tap into. Another great source for support and good basic common sense is Admiral Nurses. Link also below.

What would be good is to find out what things your sister is taking responsibility for in that can be done by someone else - even if it means paying. Is there the money for that? (The organisations listed below may be able to help guide you to finding posts of money to fund these) Your mother is in a care home. Is your Dad struggling with the fact he has lost his wife or is is he is struggling with the logistics of getting to see your mum? If your Dad is lonely (and grieving) Age UK do a befriending service. A local taxi company can be booked to pick your Dad up and take him to your mum. There will be clubs locally that your Dad may enjoy going to once he has tried them - Mens' Sheds Association comes to mind: https://menssheds.org.uk/

What might be a good idea is to do your research and then take time out to have a good talk with your sister and present some ideas and ask her which does she think will work best and that she would be happy having put in place. She may just be overwhelmed and may need counselling also to help sort things out.

Very best of luck in your journey.

Alzheimers Local: https://www.alzheimers.org.uk/find-support-near-you#!/search

Admiral Nurses: https://www.dementiauk.org/get-supp...LBln_n62Sll0F5Y1qkqSWu0ZF9uCaIjxoCYZQQAvD_BwE

Age UK: https://www.ageuk.org.uk/

 

[love.dad.but..]

I am sorry you are feeling so down this illness brings very little respite for anyone as it trundles on through different often challenging stages. Without knowing how far away you live from the care home and your family logistics could you...detour by your dad's home and visit with him or arrange to meet him or ypur sister/brother at the home then your visits other than the journey maybe would not be so lonely or think of it as a day trip for the whole family...pop into your mum for an hour on your own if you or your family don't want to pop in with you...then do something else or visit somewhere in the area as a family.

I can sympathasise with you but also with your sister. In our family I was that sister too. I was the closest geographically..the most proactive..the most organised in practical matters..had more of an empathy and understanding of dementia and dad...he needed one of us at least to help.....I waded in with things like personal care before dad had to move into his NH...I didn't resent it. That is just the way it worked. However...whilst I didn't fall out with my 2 sisters and they from a distance only visited occasionally because they had family..younger children than I etc...I had family and had to reduce my work hours as a result of caring and there wasn't anything practically they could help with from a distance....I was surprised and saddened for dad and and I admit a bit cross for me and baffled at their seemingly lack of interest that neither ever thought or could bring themselves to pick up the phone or email even after I asked them several times to do so now and again rather than me always reporting back and it wasn't just one way so I could share the daily mental load which would have helped me in knowing I had that support to chat things over especially if some visits were hard. Just contact every couple of weeks.At times I felt completely overwhelmed especially as OH was also seriously ill.

Could you arrange a sibling meeting if you feel it would upset your dad so not include him to talk things over in a frank way to see what each of you needs and expects of each other and what you can realistically each provide in support of your mum and each other. Probably like my family all of you have busy lives maybe in different ways with differing responsibilities. Whilst I had my own feelings about my situation and although at times felt very alone I always made sure the lack of communication wasn't from me I held back and bit ny tongue often as I wanted them both to still want to and be involved9....although I will be honest that I often felt like just stopping. My 2 sisters after dad died said openly that they resented the 8 hour round trip to see dad to find he either was grumpy or ignored them and they has left their family once every 3 months to do that..my round trip was of course far less 1.5 hours and dad often was verbally aggressive so welcome to my world on every other day visits! Why not lessen the frequency of your visits to say monthly and try to change the trip structure as I suggested. Perhaps replace some visits with a phone call to your sister to ask how your mum is and say although you can't do anything practically to help is there anything she needs to offload or chat over? No winners with dementia sadly.

Edit...spellings

 

[kindred]

A few years ago, I had it all. A lovely family,a great husband, 2 amazing kids, a job, a loving and kind mum and dad who were my best friends and my world. Everything was great. Then 2 years ago, after a period of feeling my mum was depressed we were given the devastating news that mum had Alzheimer’s. She was in her early 70s. She was beautiful. She was my kids wonderful nanny. She was everything to me. I was initially shocked, I didn’t believe it could be real. They must have got it wrong. Then suddenly, almost as if her diagnosis had unlocked something in us all, it was blindingly obvious that mum had this horrific disease. I will never forget my dad calling me, flustered and breathless. “ your mum didn’t recognise your brother today”he said. It hit me like a slap in the face.The months that followed were simply hideous. Mum was scared, aggressive, hallucinating, hearing things, imagining things, Calling the police as an intruder ( my dad)was in the house. I lost count of how many times he called me from the car in their driveway having been thrown out again. It was becoming unbearable. We didn’t know what to do. This was killing him. At 80 he was worn out. Then continence became an issue and this finally broke my dad. He knew he couldn’t handle it anymore, nor did we want him to.
So we put mummy in a care home. This decision, although it was the only option we had, Has literally broken me and the rest of our family. The sadness and guilt we feel is never talked about, we all pretend we think it’s for the best but it is killing us all. We can’t say anything though as we know dad simply can’t cope. Mummy is fading away daily. I live far away so travel every couple of weeks to see her and I feel it’s really affecting my own family life. My husband is left with the kids for long stretches as a time as I embark on these endless lonely and heartbreaking visits. My sister has fallen out with me as she is left with it all. Nothing is do is good enough in her eyes. My brother visits but he is more practical and isn’t as emotional about it all. I am suddenly very alone. I now feel I need to give up work as I want to see more of my own kids, who get very upset each time I leave. I literally feel my life is crumbling around me and the person I need to talk to, the only one who would understand, isn’t there anymore. I miss her so, so much. I hate this disease with every inch of my being. The bleakness of this situation is grinding me to a halt and I don’t know what to do.

I do so understand. I just wanted to say that a care home need not be the worst thing. I promised my husband he would never go in a home, but when he became violent, I had to break this promise. I have a thread on this: Please don't throw me away: breaking my promise. I talk about life in a nursing home each day as I go each day and I see a lot. I see a lot of caring, loving, acceptance and a family feel. I would so like you to be able to put your mind at rest on that one, though I know it is hard. Kindred.

 

[Cazzita]

Wow, th responses are so heartening! Wishing you all the best and hope that you get some peace of mind soon. Wishing you love and strength xxx

 

[Mickeymarley]

Thank you to you all for your thoughtful replies. It is good to know that I can vent to someone about this nightmare. Some of you have asked how far I am from mum. I live in England but mummy is in Northern Ireland. She is a flight away. Tomorrow, i will take my kids to school, go straight to work for the day and then drive straight to the airport to stay until Sunday. I do this every 2 or 3 weeks. I often spend days at a time, leaving my kids and husband behind. It’s exhausting. It’s only an hour flight but it’s a 6 hr trip each time door to door. My kids cry each time I leave. I really cannot do any more. Something has to give. If I didn’t work then at least I would have a bit more time with my own family. My sister doesn’t understand or appreciate what I’m doing. In a strange way I envy my sister who lives close to my mum and dad. At least she says goodnight to her own kids each night and can see mum whenever she likes, although I fully appreciate all she has to deal with, at least she doesn’t work. This illness has created a rot in our family. A rot which manefests in siblings blaming each other endlessly and tallying time spent with mum. Working out who is doing what, and when. Just when we should being supportive to each other as we grieve the long as of our wonderful mum, we are falling apart as a family, privately crumbling. I am unable to say I’m struggling as obviously my sister has it harder. Instead I have to constantly thank her. Tell her how I’m so grateful. Tell her how she is doing it all. Inside I want to yell ‘I’m not coping with this and I need help too, I’m doing all I can and I’m grieving too’ I want to grieve with my sister, without blame, without time charts. It’s all so raw and full of hurt. I hope one day we can look back on this time and see how broken we were and more forward. Sadly I fear the damage will be irreparable. Thank you all again for your replies.

 

[love.dad.but..]

My suggestions are a non starter then as I didn't realise the distance involved. No wonder you feel it is impacting on your family and you... I would do too. Could you cut your visits to once a month or every 6 weeks ...write or phone sister to explain tell her you understand from her perspective and this is how the situation affects you but perhaps differently to your sister...perhaps you could take the lead to phone sister every week or couple of weeks to offer support on the phone and ask if there is anything from a distance you can do to help. It might break the cycle of blame/hurt/miscommunication etc.Your family come first...your mum would understand if she could...just to find a way to hopefully get your sister on board and find a way forward where you can all support your mum and your sister feels however small you are all doing a bit..

 

[Mickeymarley]

My suggestions are a non starter then as I didn't realise the distance involved. No wonder you feel it is impacting on your family and you... I would do too. Could you cut your visits to once a month or every 6 weeks ...write or phone sister to explain tell her you understand from her perspective and this is how the situation affects you but perhaps differently to your sister...perhaps you could take the lead to phone sister every week or couple of weeks to offer support on the phone and ask if there is anything from a distance you can do to help. It might break the cycle of blame/hurt/miscommunication etc.Your family come first...your mum would understand if she could...just to find a way to hopefully get your sister on board and find a way forward where you can all support your mum and your sister feels however small you are all doing a bit..

 

[Mickeymarley]

Hi Mickeymarley
I'm so sorry you're in this situation.
Can I tell you what I'd tell a friend? Your mother is getting the care she needs in the home. If it's a good home she'll get that care whether she's visited or not. (I know how this sounds, bear with me) The rest of the family are suffering in various ways and you're the ones who need help. You need to help each other and also find help from third parties.
Does your father have health issues that mean he needs an assessment from social services? If so, your sister also needs a carer's assessment.
Next - you and your sister need to talk. Could you go out for a meal this weekend? Cards on the table? Or write to each other.
My 'baby brother' is 60 on Friday. He comes to visit regularly and I hug him when he arrives and hug him when he leaves. I've put a letter in his birthday card, telling him I'm proud of him and Mum & Dad would be if they were still here. I told him he's kind, loyal, generous and I love him. I couldn't say all that face to face, it had to be in a letter. If you can't talk, write. You need to agree that you'll find a way to get through this together.
Next - could you visit your mother every week? Of course you couldn't. So what makes you think you can visit as often as you do now? You obviously can't. You just can't. End of, as the young people say. Visit less often. Encourage your sister (and your Dad) to visit your mother less often.
Money doesn't solve all problems but it may help. I'm about to take 6 weeks' unpaid leave from work - I can't really afford it but I need it for various reasons. Perhaps you could do the same. You could spend time with your own family. Then when you return to work you throw a little money at the problem - get a cleaner, go bowling and then get a takeaway. Send your sister a voucher for a spa day - it'll express your gratitude and is easier than bowing and scraping.
Sorry this is so long. Won't write more now. I wish you well.

Thank you so much for taking the time to reply. I don’t know if I’m ready to write to my sister yet. It’s all so raw right now and as she makes me feel I’m not doing enough means there is a lot of resentment ( on both sides) there. I would like to think a day will come when I will feel able to communicate with her honestly. That day hadn’t come. There’s just too much hurt right now.
I also can’t seem to back away from mum. I don’t feel I can comfortably visit less. I keep thinking that she will be gone soon enough and I should cherish every second I get to be with her. I think I’m just really having trouble with how my life has been thrown on its head so quickly and how I seem to have very suddenly lost my old life. I feel it was only yesterday that she was lifting up the phone when I called, laughing together on the sofa, watching her walk through arrivals at the airport waving frantically. I miss her so, so much. I can still see her, hear her, but she will never ever really ‘talk’ to me again and I’m so devastated by that. I still have hope that maybe one day, we can chat again and while she’s alive there’s hope. I can’t give up on her just yet. X

 

[yak55]

So sad.......I understand completely and wish I didn't. I hope you find the strength to carry on know that if you ever need to 'talk' there's always many listening ears to give you some comfort who are in the same situation as yourself and your family.
Sending hugs x

 

[Amlama88]

I completely understand the pain you feel. It's unbearable at times and you wonder how you keep going on. But I bet your mum would be super proud of how you get up and carry on every day and you know the nursing home probably is the right place so try and not feel guilty as it will only lead to further pain. My dad (66) passed this week after 4 years of hell; we are trying to forget the evil Alzheimer's that took him from us and reminding ourselves about his unforgetable character and the good times we shared...but it's not easy. It's good you have your family. I don't know what I would have done without mine. I had 8 sessions of counselling through work and at 1st I thought it was a waste of time, but by the end I realised it was helpful to talk to someone who wasn't family or friend to reflect and allow myself to process everything that had happened. I would say stick with counselling even if you don't think it's helping. Take care and I hope you resolve things with your sister x keep strong x

 

[marionq]

Well I’m the mother with three adult daughters and I would rather be dead than tear my girls apart. They all have families who need them more than I would if I were being cared for in a decent care home. Stand outside of yourself and be your own best friend. Look at the effect on your immediate family of what you are doing. Consider that your sister has a totally different set of circumstances which none of you can change. That is how it is. If your mother dies tomorrow you have a lifetime of memories with her so don’t beat yourself up about the need to squeeze every drop of feeling out of what’s left. Do what feels right and has some balance. Support your sister from a distance but no need to apologise for not being on her doorstep. If she has any sense she will understand.

 

[Lindy50]

Well I’m the mother with three adult daughters and I would rather be dead than tear my girls apart. They all have families who need them more than I would if I were being cared for in a decent care home. Stand outside of yourself and be your own best friend. Look at the effect on your immediate family of what you are doing. Consider that your sister has a totally different set of circumstances which none of you can change. That is how it is. If your mother dies tomorrow you have a lifetime of memories with her so don’t beat yourself up about the need to squeeze every drop of feeling out of what’s left. Do what feels right and has some balance. Support your sister from a distance but no need to apologise for not being on her doorstep. If she has any sense she will understand.

I couldn’t agree more @marionq (I have two daughters)