Relationship

[Gea]

Hello everyone, I lost my younger son five and a half years ago. For the first couple of years I found it very hard to keep going but I did. In that time I got re -acquainted with a friend of many years [about thirty] we had always been platonic friends ,

but two and a half years ago it became a relationship.

He had a football injury about fifteen years ago and it caused blindness in one eye and bleeding on the brain. He told me has been diagnosed with dementia /alzheimers .

Being with him has given me great joy, but the dementia seems to be causing him a great deal of distress , now, much more than before.

He has had times where he has backed off from our relationship and said he can't make a commitment, but this week has been awful.

He told me he had seen someone else. It really didn;t make sense so I rang the Alzheimers society and they told me about time shifting, which completely made sense

I told him about it and also suggested he ring them himself. He has mentioned suicide at times, and seems very unhappy at times,, other times very happy !

His moods change a lot. All of this week has been a roller -coaster.

One day he says very upsetting things, the next he apologizes , he doesn;t seem to remember his behaviour. He wrote me a note yesterday saying how sorry he is.

Also he said you hurt the one you love most and he loves me more than anyone in the world. Today he came to see me and said he wants to see other women and be free, and travel ,,,I argued with him , I just felt so hurt, we sort of made up, I do love him , but I'm really struggling and don't know what to do.

 

[Grannie G]

Hello @Gea

What a difficult situation for you.

I wouldn`t argue with your partner if you can help it. He could change his mind from hour to hour.

This Thread may help.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Lawson58]

Hello everyone, I lost my younger son five and a half years ago. For the first couple of years I found it very hard to keep going but I did. In that time I got re -acquainted with a friend of many years [about thirty] we had always been platonic friends ,

but two and a half years ago it became a relationship.

He had a football injury about fifteen years ago and it caused blindness in one eye and bleeding on the brain. He told me has been diagnosed with dementia /alzheimers .

Being with him has given me great joy, but the dementia seems to be causing him a great deal of distress , now, much more than before.

He has had times where he has backed off from our relationship and said he can't make a commitment, but this week has been awful.

He told me he had seen someone else. It really didn;t make sense so I rang the Alzheimers society and they told me about time shifting, which completely made sense

I told him about it and also suggested he ring them himself. He has mentioned suicide at times, and seems very unhappy at times,, other times very happy !

His moods change a lot. All of this week has been a roller -coaster.

One day he says very upsetting things, the next he apologizes , he doesn;t seem to remember his behaviour. He wrote me a note yesterday saying how sorry he is.

Also he said you hurt the one you love most and he loves me more than anyone in the world. Today he came to see me and said he wants to see other women and be free, and travel ,,,I argued with him , I just felt so hurt, we sort of made up, I do love him , but I'm really struggling and don't know what to do.

I think the fact that you are asking the question here indicates that your doubts are are very genuine and keeping you awake at night.

I hate to say it but if the last week has been a roller coaster, that is an indicator of what lies ahead of you should you continue the relationship. And it will only, can indeed only get worse.

There are many of us on this forum who once loved their person with dementia but this is such a destructive disease that it is really, really hard to keep that love alive as the person you loved slides away into the abyss of dementia. Then you become ’just a carer’, chief cook and bottle washer, and sometimes wiper of noses and bottoms.

If it were me, I would flee, escape while you can, before you are sucked into years of hard slog, not much happiness and no empathy or gratitude from the person you care for.

You have a choice that many of us didn’t. I hope you make the right one.

 

[special 1]

Hi there. Please take care of yourself and heed the advice you get before it is too late, as you will have a life of sheer HELL. I am a carer for my Husband for over 5 years now and every day is just an on going battle. He is 79 I am 72 and my life is just gone, no outings, joy etc. Look after yourself. 🎄🎄

 

[canary]

Hello @Gea

The things that you have written about in your post are, unfortunately, typical of mid-stage dementia and it will become harder from now onwards.
I am one of those who has lost their love for their partner, but I have 40+ years of marriage behind me to give me the strength to continue. I can accept having to do everything, being mostly stuck indoors as I am not able to leave him for long, no holidays or evenings outs, the loss of empathy and conversation, but could you?

I would recommend that you keep a certain distance. Do not live with him, keep your own place that you can retreat to and dont let him move in with you. It is easy to slide into caring and is often very difficult to get out of. It may be better to just remain as friends

 

[Violet Jane]

Step back. Definitely don't get married or move in together; keep your own places. This man doesn't appear to be able to make a commitment anyway. Dementia is a progressive disease and if you live together you will find it extremely difficult to extricate yourself from being a full time carer when it all becomes too much. Social Services will let you struggle on as he won't be at risk. When you need him to go into a care home he will refuse and Social Services will respect his wishes and ignore your needs.

 

[Banjomansmate]

The Banjoman and I lived separately, ten miles apart. I always referred to him as “my friend “ as I felt our relationship was between ourselves and other people could think what they liked about it. When I realised that he was showing symptoms of dementia I cared enough about him to convince him that Lasting Power of Attorney was a useful thing, expecting him to grant it to his daughter. He would only do it if I held LPA for him (we had been “together” for about ten years at that point). I agreed to his wishes but insisted his daughter and other members of his family were included and the LPAs were drawn up by a solicitor so nobody could say I had influenced his decision.
This decision on my part meant I then took on the major responsibility of caring for him as he deteriorated and I had to make most of the decisions when dealing with whatever authorities were involved. Because we lived far enough away from each other to make permanent hands on caring impossible I was always able to throw the responsibility at the LA. Yes, I took him to medical appointments, and there were plenty of those, I did the majority of his food shopping etc. but I told the Social workers that I had my own life and responsibilities so I wasn’t there to look after him full time.
Caring for him with dementia was a major part of my life for four or five years and it took its toll but I could go home and sort of forget about it for a short while, at least until the next phone call at 3.00.a.m. or the next emergency.

If you are prepared to take on this sort of responsibility because you care enough for this man please realise it is draining both emotionally and physically and you have no idea when it will end. Keep separate lives as much as you can or you will get dragged inexorably into a caring role that is hard to escape. I do not regret all that I did for my Banjoman but four years after his death I still feel it has knocked the stuffing out of me!

 

[Gea]

Thank you so much for the replies. I will re -read them all after writing this...
isn't it a terrible disease ?

I actually saw him today , I was on the verge of ending it, but he rang up , I was cold of the phone, he said could he come round and I said only if he wasn't horrible...

We do live completely separately, which I now see is a real blessing,

the other thing which makes the situation probably different is he is quite wealthy, though you would never guess !! I have made a point of never taking advantage of this, and as I have known him for so long he knows it is my nature.

He has a manager who takes care of the running of his sort of business.. and a married couple who are caretakers . They make sure he has had his medication [no idea what it is]

In a sense he and I are lucky but I don't think any of it is good, he has no proper heating where he lives , most of the house is freezing,

What he said , which surprised me was he didn't remember any of what was said yesterday... but he did say he was sorry if he had behaved badly, but also he asked me to cuddle him a lot,

he did say he did want to go away , but not for long or far, and didn't mention the other thing which had absolutely devastated me.

Someone mentioned middle stage dementia ...I suspect thats true, also someone sent me a long piece of writing , which I will read again. but [thank you] this is so helpful for me . all of the replies, have helped

I am in love with him which makes it all so much harder really.

From the replies I can see more clearly the situation I am in. I felt guilty when I first wrote. So just checking in as I did ring somewhere and they suggested getting as much support as possible, so I'm doing it.
Because I lost my son , I just feel like having some joy, which he normally gives me, before that I could hardly cope.. also I am acutely aware of unexpected tragedies ... all of your replies have given me a much better idea of how to deal with this.. so thank you very much