The illness that keeps on taking

[maryjoan]

Hello everyone
I have not been on here for a while,but there were days when I was with you many times each day.
what happened?
My dear dear partner, who had vascular dementia and crohns disease (with an colostomy that he did not understand) caused my life to implode before and during lock down for six years till I was beyond breaking point. A family and social work conference resulted in him moving back to the Midlands from Devon, into a nursing home near his two children. I agreed with this plan.

Last Monday he died very suddenly. His son phoned me to tell me speaking for about three minutes.

Since then I have been pretty much excluded from everything other than the group WhatsApp messages. I have had no involvement in the funeral arrangements, no one has phoned to see how. I am, and I feel totally adrift.

When I was caring for my partner I did so to the very best of my ability. I truly loved him. We were together 14 years. But only about four years before this truly horrid disease started to take him from me.

I am bereft, I am mourning, but alone. If dementia had not come into our lives, and he had died down here in Devon with me, I know I would have been the one making the arrangements with love and ❤ care, but now I have to go around 200 miles to a funeral that I don't feel I will be welcome at.

That's it. I had to share my feelings with you. Thank you for reading

 

[2ndAlto]

Oh @maryjoan I am so so sorry for your loss and your bereavement and for the unkind actions of his family - who may or may not have thought about how you are feeling. I have no idea what sort of relationship you have had with them but it might help you to write about your life with your partner and how much you loved him? Will you be going to his funeral?

 

[maryjoan]

Oh @maryjoan I am so so sorry for your loss and your bereavement and for the unkind actions of his family - who may or may not have thought about how you are feeling. I have no idea what sort of relationship you have had with them but it might help you to write about your life with your partner and how much you loved him? Will you be going to his funeral?

Yes, I am going to the funeral, and that is worrying me. His two children were " distant" when I was doing all the caring although his son is a caring person, the daughter is more selfish. Neither have ever married or had children.
I have kept a " covid diary" of our lives together and carried it on ever since, so, yes, I have put my feelings into words, thank you for the suggestion.

 

[kindred]

Oh Maryjoan, I remember you so well. Sending my love. I’m so sorry to hear about this. Thank you for coming back to talk to us.
With love geraldinexx

 

[Izzy]

@maryjoan I’m very sorry for your loss. Your love for your partner just shines through your post. It’s so sad that you are being excluded.

Thank you for sharing here. I hope it has helped a little. Wishing you strength.

 

[canary]

I remember all of your struggles and I am so sorry that you have been kept out of all the arrangements. So hurtful.

Go to the funeral with your head held high. You were his partner for a long time and looked after him to the best of your ability. If his children dont make you welcome, ignore them - you are going there to remember him
(((((((((((((((((((((((hugs))))))))))))))))))))))

 

[maryjoan]

I remember all of your struggles and I am so sorry that you have been kept out of all the arrangements. So hurtful.

Go to the funeral with your head held high. You were his partner for a long time and looked after him to the best of your ability. If his children dont make you welcome, ignore them - you are going there to remember him
(((((((((((((((((((((((hugs))))))))))))))))))))))

Thank you Canary, that's just what I needed to read......I will!

 

[Grannie G]

Hello @maryjoan. I`m so sorry to hear about your partner and how his family is treating you.

I think they will be made the more uncomfortable by your presence at his funeral, not you. They are the ones who have been mean.

Deep down I know they know what we know about you, even if they are unable to admit it.

 

[Alisongs]

Hello everyone
I have not been on here for a while,but there were days when I was with you many times each day.
what happened?
My dear dear partner, who had vascular dementia and crohns disease (with an colostomy that he did not understand) caused my life to implode before and during lock down for six years till I was beyond breaking point. A family and social work conference resulted in him moving back to the Midlands from Devon, into a nursing home near his two children. I agreed with this plan.

Last Monday he died very suddenly. His son phoned me to tell me speaking for about three minutes.

Since then I have been pretty much excluded from everything other than the group WhatsApp messages. I have had no involvement in the funeral arrangements, no one has phoned to see how. I am, and I feel totally adrift.

When I was caring for my partner I did so to the very best of my ability. I truly loved him. We were together 14 years. But only about four years before this truly horrid disease started to take him from me.

I am bereft, I am mourning, but alone. If dementia had not come into our lives, and he had died down here in Devon with me, I know I would have been the one making the arrangements with love and ❤ care, but now I have to go around 200 miles to a funeral that I don't feel I will be welcome at.

That's it. I had to share my feelings with you. Thank you for reading

I feel for you. My mum, over 100, in over 50s housing, had a bad fall at start of Lockdown. 100 miles away. Older sister, close by, stepped in and took over everything without consulting or informing me until afterwards most of the time.

I'dactually contacted the manager at lunchtime the day mum fell, as mum wasn't answering our daily phone call. Manager hadn't done her required daily check....

Ironically, I'd been visiting for a long weekend every month for 30 years up to Lockdown. I also took her on three visits to her home town in East Germany. Even did a special visit to explain visits had to stop for a few months. So 48 hours a month contact? Plenty of talking, going out, reminiscing, company.

My sister usually just about popped in on Sundays, with mums shopping. Couldn't bear to stay more than an hour, as Mum just kept talking! Visits could be 4pm or 9pm. Which mum resented. So 4 to 6 hours contact a month.

After the Lockdown fall my mum came home as she wanted and my sister had promised. Put bed and belongings in lounge. Which my mum hated for the next 3 years. Sister needed up doing all the daily care 3 or 4 times a day. (Carers were sacked - basically all they did was make more mess that took hours to clear.) Mum was left alone most of the day and overnight, hating her predicament and increasing frailty, and the bed in the lounge.

I was still working and living 100 miles away, and kept out of a nonexistent loop as sister was doing it all. She had and has no idea of mums tastes, interests and family history. I had no choice.

Mum eventually went into a care home, they diagnosed full blown dementia which social services had constantly denied. Only there 4 months, sister visiting daily. Mum didn't want us there. Kept screaming at us. Sister persisted in taking 3 distressed great grandchildren all under 10....

Mum died and I had to fit in with what my sister had prearranged! I did get to write Mums life history, which is when we realised how little my sister knew! I was just a guest at the funeral. I had rung to discuss the arrangements for the day. I got told there's nothing to arrange, you're being picked up at 8.30.....

Minimal contact since. I did get given a huge pile of family correspondence dating back a century, which my sister would have thrown out.....not yet gone through it all.

One year on and I'm still compiling photo memory albums for all family and friends at home and abroad.

Would have been done quicker, but my husband has fast accelerating dementia......

I would suggest you keep up correspondence (with copies) asking for you to receive and keep anything that features your input. Make photo and memory albums for everyone who knew your partner.

Do you know anything about your partners Will? Might be worth discussing with a solicitor even if your partner died intestate.

You could even organise your own memorial event in Devon for friends and family.

He was your partner. Remember and honour him in your own way.

 

[maryjoan]

All that you are all kindly saying resonates with me.

Yes, I have become a guest at my dear partners funeral, but I will do him proud. It will be hard, but I will do it.
I have just bought an outfit that I know he would like!

As a genealogist, and of an Irish family, I am a story teller, and his story is already written, I will conclude it after the funeral, to give to those I wish to.

 

[maggie6445]

@maryjoan , I'm sorry for your loss especially as it was sudden and you had no chance to stay your goodbyes.

It's very difficult for families when someone dies quickly and unexpectedly. I'm not trying to make excuses for his family but they will also be dealing with their loss. Arranging a funeral and clearing a care home amid registering death ,informing authority and working as well.

I know funeral directors arrange things but I also know they keep contacting you. What flowers do you want? ,what music ? what version of music? ,what time if the two the crematorium can do?,what day? etc etc... If they work then employers usually only give three days off to arrange these and attend the funeral. Sadly, nowhere near enough.

It may be that they are excluding but also maybe that they are taken up with the arranging. You are on the what's app group still, so ask your questions and and suggest that you write a short eulogy to have read or read yourself.

Ask if you could provide some photos for the service or meet up afterwards and involve yourself.

Some people are just unthinking about others but would probably be happy for you to be involved. They may think it too much for you without asking you first!

I hope you are made welcome and feel part of his service x

 

[jugglingmum]

I'm sorry for your loss.

Your tried your best to care for him and ended up defeated (partly by the system)

I hope you feel the funeral gives you a chance to say your goodbye.

Did you have a group of friends in Devon that you could invite for a drink together to informally remember him the week after the funeral?

 

[maryjoan]

I'm sorry for your loss.

Your tried your best to care for him and ended up defeated (partly by the system)

I hope you feel the funeral gives you a chance to say your goodbye.

Did you have a group of friends in Devon that you could invite for a drink together to informally remember him the week after the funeral?

That is an excellent plan, I like it a lot. Thank you

 

[Jale]

@maryjoan , so very sorry for your loss of your partner. Others have given you excellent advice so I have nothing to add there (sorry), but will say that I hope you are able to remember him in your own way. Take care

 

[Sarasa]

So sorry to hear of the loss of your partner @maryjoan, I know how much you cared for him and how much you sacrificed to keep him safe. Go to the funeral and do him proud and then have a celebration of his life down in Devon with his friends.