Am I being taken for a mug

[Skylark/2]

Good evening everyone,
Feeling low so please bear with me.
My husband has had Alzheimer’s for about 3 years, we are both 77, married for 53 years in 3 days time! My husband ran his own business, has always had a temper but was a good , generous husband and a good father to our 2 sons . His personality is changing and he can be very verbally abusive. He isn’t allowed to drive anymore, so I now drive us everywhere. I find this can be quite stressful. When he retired we left London to live in the NW to be closer to his family, though we are quite a private couple with not many friends.
One Son lives in the U.S and the other one about 2 hours drive away, between them they have 3 children.
We are fortunate in that we own our own house, my husband has a large pension pot, we both have private pensions plus our state pensions and over the years have supported both sons financially when they needed it. We have been making a contribution towards our 15 and 17 year olds grandchildren’s private education.
My ‘ negative ‘feelings are as follows.
Since Covid and my husband‘s diagnosis the son who lives a couple of hours away only visits about 3 times a year, stays for a couple of hours and then off again. He phones on a Sunday, conversation lasts literally 2 or 3 minutes.
The son who lives in the States has been unable to visit for 3 years, first because of Covid and then whilst waiting for his green card which came through a few months ago. He has just returned to the States after being here in the U.K for 6 weeks. During this time he spent ( with his 3 year old daughter, our grandchild ) 9 days. We have just started to contribute to her future college fund. Today our son told us they would be coming to the U.K for Xmas but would be visiting us the week before Xmas, not over the Xmas period at all, they are staying with our DIL’s parents. I am disappointed that I won’t see our 3 years old granddaughter over the Xmas period…..maybe Boxing Day.
My husband’s sister lives 2 minutes walk away, never makes any contact since her brothers diagnosis. She has 3 children , 2 whom have not spoken to us for nearly 3 years. My husband and I have supported them in the past, especially when his sister was going through an acrimonious divorce.
I know my husband was never the easiest of people, and is not now, but I just feel so hurt and upset at the way our sons and his family just seem to have drifted away and left me ( especially) to battle on day in day out.
I also realise that this is a ‘ poor me ‘ post but I need to get it off my chest! Thanks for reading.

 

[SeaSwallow]

Oh @Skylark/2 no wonder you are feeling so down, unfortunately there are times when support from family is sadly lacking. I hope you feel a little better through posting here. There will be many people who will understand just how you feel.

 

[sapphire turner]

Hi Skylark/2
I feel your pain, most friends and family have drifted away now and their only contribution is ‘he seems alright to me’.
Luckily I have a few close friends and my sister and my daughters who believe me otherwise I would think it was me that was losing it 🙈🙈🙈

 

[Ocelotalot]

There’s no reason to contribute or support then if you don’t want to.
I too have had a hell of a time being believed. Invite people to stay over night, and then ask them to help. Get them to cook and answer all your husbands questions!
Sadly, visitors seldom Get It as the sufferer usually presents their “hostess mode” persona.
Tell them how grueling you are finding it.

 

[sdmhred]

So sorry @Skylark/2
Us carers and the folk we care for are so often invisible to the world 💔💔
would u want to tell ur sons how you are feeling??

 

[jennifer1967]

i have my younger son who doesnt live locally with a wife and a 5 yo son. he hasnt been down for over a year and says he cant afford to as they come by train and book into a hotel. both him and his wife are full-time teachers. we offered to contribute to the train fare or hotel etc. he said he still couldnt afford it so i let it go. i then hear that he and his family are in canada for 4 weeks visiting her family. even on the phone he hasnt got a clue. he has made me very angry but if thats the way he wants it. one day his dad may not recognize him.

 

[Violet Jane]

I really do sympathise but I am wondering how much you saw your sons (at least the one in the UK) pre-dementia. I probably didn't visit my parents - who lived a couple of hours away - more than four or five times a year at most. Your son does phone once a week; many don't do that. You mention that your husband was never easy, and I'm afraid that adult children vote with their feet if they don't have a good relationship with their parents. That happened with my sister who found my mother difficult and felt that my father should have taken her to task more.

If your husband is volatile or scary then it's understandable that your son in the US might want to spend Christmas Day with his parents-in-law. You granddaughter is very young and doesn't know you well.

Have you opened up to your sons about your struggles with your husband? They may think that you're coping well. Alternatively, they may see your struggles but don't know how to help or feel that your husband should be in a care home but don't want to broach the subject with you.

Many people just can't handle dementia. I don't think that my brother ever visited my mother in her care home without me and the home was only seven minutes drive from his home.

Have you spoken to anyone about your husband's verbal abuse? It's not acceptable and you shouldn't be expected to put up with it.

 

[Skylark/2]

Thank you for replying.
With regard to the school fee’s contribution, I feel it is a commitment we have to honour.
They are happy and thriving at the school particularly our granddaughter who has dyslexia issues.
Couldn’t penalise them for the ’ thoughtlessness’ of their parents.

There’s no reason to contribute or support then if you don’t want to.
I too have had a hell of a time being believed. Invite people to stay over night, and then ask them to help. Get them to cook and answer all your husbands questions!
Sadly, visitors seldom Get It as the sufferer usually presents their “hostess mode” persona.
Tell them how grueling you are finding it.

 

[Skylark/2]

I really do sympathise but I am wondering how much you saw your sons (at least the one in the UK) pre-dementia. I probably didn't visit my parents - who lived a couple of hours away - more than four or five times a year at most. Your son does phone once a week; many don't do that. You mention that your husband was never easy, and I'm afraid that adult children vote with their feet if they don't have a good relationship with their parents. That happened with my sister who found my mother difficult and felt that my father should have taken her to task more.

If your husband is volatile or scary then it's understandable that your son in the US might want to spend Christmas Day with his parents-in-law. You granddaughter is very young and doesn't know you well.

Have you opened up to your sons about your struggles with your husband? They may think that you're coping well. Alternatively, they may see your struggles but don't know how to help or feel that your husband should be in a care home but don't want to broach the subject with you.

Many people just can't handle dementia. I don't think that my brother ever visited my mother in her care home without me and the home was only seven minutes drive from his home.

Have you spoken to anyone about your husband's verbal abuse? It's not acceptable and you shouldn't be expected to put up with it.

Thanks for replying.
Pre Covid and dementia we drove the 2 hour drive to see our son and grandchildren every couple of weeks, sometimes staying over. We really enjoyed being there but now my husband isn’t allowed to drive and I am not the most confident of drivers it has become more stressful. A big problem too is that my husband’s personality is changing and sadly he has taken a dislike to my DIL ( last year she shouted at him to stop driving before he killed a child!), so on the rare occasions when we are all together ( a recent birthday) I am on tenterhooks!
Re the upcoming arrangements with our son who lives in the States and Xmas.
It was a family tradition ( again preCovid) that on Boxing Day we all got together ,family plus relatives for a meal, a chat, silly games, silly prizes etc., All that had to stop and this will be the first year that the States contingent will be over plus a chance for us to get to know our 3 year granddaughter better and her know us. Our son’s plan is to spend a couple of pre Xmas days with us and then drive to his in-laws on Christmas Eve and spend the rest of the holiday with them before flying back to the States after the New Year. I just smiled, nodded and feel I must go with the floe
I totally agree with you about needing to open up to our sons, I have done slightly but I think to myself ‘ why worry them, when they are so far away’ plus they think their mother is strong and capable…….NOT! I’m not waving, I’m drowning!
Husband is snoozing at the moment and have already had words this morning about my using ‘ his’ car to go ‘ swanning around ‘ seeing my elderly friend for a coffee. I see the woman once a fortnight, she is my life line. I understand it’s hard for him to accept he can no longer drive but he resents my being able to. If I suggest he comes along, no he doesn’t’ why would I want to sit and listen to women gossiping’ etc.,
Have prattled on long enough, thank goodness the football season has started!

 

[sdmhred]

Rejoice for the football season and a bit of respite!

how about writing to your sons wirh maybe some suggestions that would help you? For example, could u meet the 2hr sons at an attraction half Way somewhere you feel comfortable to do? Maybe a dads day out so DIL a can have a day to herself?

or are there admin type jobs they can do for you from afar?

they may struggle with their Dad and his dementia but if u can suggest stuff to help mum with her ‘lot’ maybe they will up their game!

it’s so hard. I tend to reach a panic point and text message shout to my siblings who make sympathetic noises, up their game for a week or 2 and then it goes back to the status quo! But if they haven’t heard the problems I can’t accuse them of not helping

 

[Skylark/2]

Thank you for taking the time to reply.
Lots of suggestions to ponder over!

 

[sapphire turner]

My OH’s grown up sons live far away and have busy lives. Once or twice a year I twist their arms to come and stay here for the weekend so I can go away with my daughters. It’s a marathon of organising- booking somewhere nice and suitable, getting house and food ready for the boys, but definitely worth the effort.
Apart from that they seem to focus their occasional efforts on things that he used to like doing (sailing, meeting up at far distant pubs or national trust parks, or driving him in his kit car) which now confuse and frighten him and I have to deal with managing everyone’s expectations and dealing with the fallout.
Something along these lines was planned for the late august bank holiday weekend but I have put my foot down and said you do what you like with him but when you come here I want to go and stay with my sister and have a couple of days rest. It hasn’t gone down well so we will see if it actually happens.
My husband said why would you want to go to your sister’s on a weekend when I couldn’t come with you? Ah bless him

 

[JaxG]

Hi @Skylark/2 I am sorry you're having such a hard time. You say your husband had a temper and was a difficult man? I do think @Violet Jane has a point, that adult children vote with their feet. My husband was a difficult man, yes he paid the bills, but he was quite emotionally detached and there comes a time in our adult children's lives when they can look at the quality of that relationship and it will inform how they feel about their adult parent. It feels to me now that my husband's relationships became a financial transaction, my children do not have a great relationship with their father, but I do talk to them about how I feel and they do support me and that makes a huge difference. My daughters have young children, work full time and have enough on their plate, my son is in Canada but I talk to him on a regular basis. Can you talk to your sons about your struggles, just being able to share and be understood can make a hug difference?
Most people have no idea how dementia affects the sufferer, and it is hard to explain when host mode kicks in and visitors think 'it's not too bad'. My brother in law used to hand out platitudes - it is what it is etc - until he had his brother to stay for a week. Now he completely understands!!

 

[Skylark/2]

Hi @Skylark/2 I am sorry you're having such a hard time. You say your husband had a temper and was a difficult man? I do think @Violet Jane has a point, that adult children vote with their feet. My husband was a difficult man, yes he paid the bills, but he was quite emotionally detached and there comes a time in our adult children's lives when they can look at the quality of that relationship and it will inform how they feel about their adult parent. It feels to me now that my husband's relationships became a financial transaction, my children do not have a great relationship with their father, but I do talk to them about how I feel and they do support me and that makes a huge difference. My daughters have young children, work full time and have enough on their plate, my son is in Canada but I talk to him on a regular basis. Can you talk to your sons about your struggles, just being able to share and be understood can make a hug difference?
Most people have no idea how dementia affects the sufferer, and it is hard to explain when host mode kicks in and visitors think 'it's not too bad'. My brother in law used to hand out platitudes - it is what it is etc - until he had his brother to stay for a week. Now he completely understands!!

Thank you for taking the time to reply.
You have hit the nail on the head! Deep down I think you are right and in the middle of the night I wonder where as a parent we went wrong ( don’t think husband feels the same) . Interestingly, some time ago when I mentioned to his sister that he was becoming less empathetic, she replied ‘ he always was ‘
Will try and follow your and Violet Jane’s advice, talk more to my sons about how I am struggling.
Thank you.

 

[MaNaAk]

Dear @Skylark/2,

I know exactly how you feel Christmas Day 2017 was very sad. One invisible said he didn't want to Xmas day with dad and I because he felt sorry for my Dil not getting on with her parents and the other one decided to come only in the evening because he wanted a break as he had worked so hard. You need to tell them how you feel and how they can help. To be honest I feel angry on your behalf because with families of their own they should be able to imagine how you feel. I think you need respite and I would ask both of them to come and see you and then say that you have to go and do some shopping for half an hour. Make it turn into one or two hours and see how they get on!

MaNaAk

 

[JaxG]

Thank you for taking the time to reply.
You have hit the nail on the head! Deep down I think you are right and in the middle of the night I wonder where as a parent we went wrong ( don’t think husband feels the same) . Interestingly, some time ago when I mentioned to his sister that he was becoming less empathetic, she replied ‘ he always was ‘
Will try and follow your and Violet Jane’s advice, talk more to my sons about how I am struggling.
Thank you.

I don't think that you 'went wrong', I just think that times and expectations have changed. I married my husband 40 years ago and I think at that time men were still seen as the 'bread winners', and they were not really expected to be emotionally sensitive. Having said that, we are also driven by the family patterns and my husband had a lot similarities to my dad who was a difficult man and emotionally distant. Forward 40 years and I see the relationships my daughters have and I realise that money is much less important than kindness, empathy, tolerance and care, all of which were missing from my OH. I think if you talk to your sons openly you might find them to be supportive and understanding. In terms of Christmas etc - I really have no expectations, there are 365 days in the year and love and support can happen on any of those days. For me the most important thing is I know my children love me - my husband was responsible for his own relationships (or lack of) with his children and as he keeps telling me - you can't turn back the clock, the past this the past.

 

[Violet Jane]

@Skylark/2, if your husband can be left then could you meet your sons outside the home without him. Perhaps you could meet half way between your UK son's home and yours. If your husband has taken a dislike to your DIL and shows it then it's understandable that your son won't want to visit with his family.

I think that you have to try to ignore your husband's nasty comments when you say that you're going out. I wouldn't suggest that he come with you either. Why should your few trips out be spoiled by him? You deserve some enjoyment in life. It's not your fault that he's got dementia and your sons don't want to spend much time with him.

 

[Lawson58]

We have never had any expectations about Christmas Day. SIL has a huge family, mostly living 2-3 hours drive away and they like to get together on the day, sometimes at my daughter’s place, sometimes elsewhere.

I have always thought that being flexible and fitting I with what everyone else had planned made our lives easier. Last year we spent a wonderful Christmas Eve at our granddaughter’s and had Christmas Day on our own which I didn’t mind at all. My son frequently volunteers at a Christmas lunch for homeless people so we rarely see him on the Day.

People’s lives change and we are not the centre of our kids’ world anymore though we are still an important part, and I am sure that t your DIL wants to spend time with her mother.

And as far as you’re driving the car and going out, do it and enjoy it. His resentment is his problem not yours.

 

[Skylark/2]

I thank all of you for your thoughts and suggestions.
I totally understand that our sons will support their wives when it comes to visiting and my OH creates an unpleasant atmosphere . I have spent years trying to head off any confrontations!
After a reasonable night’s sleep, I am feeling mentally stronger so I’m going to phone my friend, suggest meeting for a coffee and if my OH doesn’t like it, he can whistle! I just hope my resolutions stand up when I return and find he‘s in bullying mode.
Just realised today is our 53rd wedding anniversary….onward and upward.
Thanks again for your support, apologies for sounding so down in the dumps these last few posts. I know so many of you out there are having a worse time than me.

 

[canary]

Hi @Skylark/2

Congratulations on your wedding anniversary 💐

Dont apologise for having a moan, this forum is a good place for letting off steam
Oh, and it isnt a competition about who has it worst - we are all struggling in our own way!

Have a nice time with your friend
xx