Immense sense of Loneliness

[stanleypj]

I understand your feeling of loneliness especially after trying to explain to my wife my need for occasional escape and the consequent need for me to ensure her needs are met by arranging someone to visit every 2 or 3 hours during the day that I am away.
She insisted that she could cope and finds it insulting to suggest that she needs such support, and anyway she doesn't want "everyone" discussing" her. When I try to engage in conversation with her about her condition she refutes every observation made about her inability to undertake the basic tasks of shopping, meal preparation, domestic chores. The problem is me, who has taken over "everything".
It comes down to a very real effort to deny her condition, refusing even to consult our GP for diagnosis. It should be said that our GP has informally acknowledged that she has dementia,
Most of all I wonder how much of what I do is governed by my personal needs as opposed to hers.

Welcome to TP professor. I expect you will already have discovered that your situation is not uncommon. This doesn't make it any easier for you but you will find loads of support and information here. You need occasional escapes in order to try and support your wife. In no sense is this selfish.

 

[Mme Blonde]

Thank you everybody. Having listened to our friends planning their holidays I had been considering arranging a few days away for the two of us. You have brought me down to earth and reminded me of our last disastrous trip.


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[teetoe]

Thank you everybody. Having listened to our friends planning their holidays I had been considering arranging a few days away for the two of us. You have brought me down to earth and reminded me of our last disastrous trip.

Yes I am still trying to arrange some sort of holiday for him - he is very vague and uninterested. The last two were very hard on me not to mention him but after the event he said how he liked them. I still think we need to do something while he can, but what? We picked up some cruise brochures yesterday, 3-day ones where you stay on board. Will take them back today I think. He has no interest. Its this jolly FTD.

 

[Casbow]

I do not consider even a day out now. The only way to keep him happy is to stay at home.He is mostly ok at home. As long as no-one visits us. No matter who it is David will just "turn" and get agitated and pace about and be rude if the person tries to talk to him.As I can't get him to use a toilet when we go out (unless it is a disabled one ) it can be very worrying. He also shouts at strangers and walks off at the slightest thing, with me running after him. So our life is mostly at home. We go to singing for the brain once a fortnight which he really likes and now we have got a little rescue dog we get out to walk her every day. Holiday is not something I would even consider now.xx

 

[livefortodaygil]

We are away for a few days. In a beautiful cottage, in a beautiful part of the country. I decided to come away in response to my husband's constant refrain of "when can we see more of England?".

What a mistake. He is confused and doing awful things like peeing in the bath and on the floor, dropping food everywhere. I thought he would be pleased as he keeps on about seeing new things. It was a silly idea. Maybe we should just cut our losses and go home again.

But oh the immense, intense loneliness with no-one to share what we have done or seen, no one to talk to at the end of the day other than to say no we are not at home, we are here, and yes we will eat soon when I have worked out the oven.

I don't think I can cope with this again, me whose plan it was to travel when I finally retired. I've never felt so lonely in my life.

So sorry your having such a miserable holiday Jenny, totally feel for you and understand, we are also going on a little holiday in a holiday cottage soon and whilst I am really looking forward to it I am also apprehensive about the reality, on our last weekend break my hubby was quite disoriented and doing strange things. Now wondering is a wise idea but at the end of the day we all need a little break and won't know until we try. Wish there was some advice I could give you but sending you caring thoughts take care and hope things improve a little and you can make the most of it!

 

[Scarlett123]

The trouble is, when we think of "a little cottage", it sounds marvellous, and we remember those pre AD days, when it was. Alas, so much changes and the dream becomes a nightmare. We used to have great fun working out how the strange cooker worked, and would prepare the veg in companionable silence, and whilst the dinner was cooking, we'd lounge about, discussing the things we'd seen that day, and planning the next.

I'm glad we did those things, when we did, and I have all the photos and happy memories. There was a programme on TV recently, tracing old railway tracks, and one was near Barmouth, in Mid Wales. I remember a marvellous morning we had at a tourist attraction called, I think, Cloddagh, panning for gold, and I believe a nugget from there is used to make wedding rings for Royal brides. And the next day we climbed Caeder Idris.

Happy days.

 

[purplehead]

My heart goes out to you Jenny its a no win situation I fear for my our half I am only starting my journey down this road was diagnosed vascular dementia last year as my care needs increase my partner bought a motor home so we could spend quality time together visiting place and family I. Am Irish he is Scottish so family are spread out I worry what happens when I go blank away from home will he be able to cope also when we stop being able to use the motor home how he will cope cause loves driving being struck in she will be vert hard on him

 

[stanleypj]

Everyone is different purplehead but this may interest you. We bought a motorhome in 2006 when my wife was already experiencing considerable problems caused by dementia. We have had some lovely time over the years, as well as some difficulties. We last went away in the van in Spring 2015.

I wish you as much satisfaction as we have had - for many years. Give it a good go!

 

[helenmiller1985]

Well, it is difficult for a person with AD to adapt, of course. Still, stimulating environment is a good thing, I believe, even though it is not immediately obvious.

 

[GrandmaBarb]

So sorry for that awful feeling of lonliness, JennyC. I can so relate.

The last trip my husband and I took was in 2014, for Mother's Day, to visit our son and his family. It was an 8 hour trip to our vacation home where we stayed for a day before going to our son's, 3 hours away. The scenery going through the mountains was gorgeous. I would remark on it and point things out to Bob along the way. He wasn't impressed. With both legs of the journey Bob would say, every 15 - 20 minutes, "Boy it's a long way down there". Or, "This sure is a long ride." This started after less than an hour on the road.

I made sure to stop every 90 minutes so we (he) could use the bathroom, saying that I had to go and he should, too, while he had the chance. You guessed it. He would say he didn't have to go and we'd drive off. 15 minutes later he would have to go. To make matters worse he refused to go on the trip without our dog, 110-pound German Shepherd, even though I had a great house/pet sitter lined up. So, we had to stay in a motel instead of our son's home because they had a big dog and our dog was afraid of him. (He was a sweet dog. Our dog was just afraid of all other dogs because of being bitten as a puppy.) After only 2 days there Bob said he wanted to go home. We left a day early, on Mother's Day afternoon, and went back to our vacation home. After one day there we drove back home. Another very long trip. Another long, lonely ride.

For the past few years I have not been able to listen to music that we both once loved and used to dance to every Friday night. I break down uncontrollably in tears. So I don't listen to it. How I miss those days. Being so lonely when you are in the same room or house with the person you love and once knew so well is a lot more heartbreaking, in my opinion, than being lonely when you are all by yourself. My heart goes out to you.

 

[purplehead]

Everyone is different purplehead but this may interest you. We bought a motorhome in 2006 when my wife was already experiencing considerable problems caused by dementia. We have had some lovely time over the years, as well as some difficulties. We last went away in the van in Spring 2015.

I wish you as much satisfaction as we have had - for many years. Give it a good go!

Thank you stanleypj for shaing your story with me I will keep u updated on my blog how things are going any advice you can pass on would be appreciated

 

[Jennyc]

We are still here - home tomorrow. I decided I could surely cope, and it would be good to see new places. I hadn't anticipated the lavatorial problems. This seems somewhat new (constantly "missing" at home, but sort of coping, but much worse since away. Thank goodness for Radar keys, though still much time spent floor mopping with toilet paper, not very adequate). And now some other oroblems too, won't go into detail. I do hope when we are home things will be easier.

Thank you all for all your amazing support and comments. Grandma Barb, I so feel for you, your story has such resonance. Life is a bummer.

We've been lots of places, seen lots of things, all rapidly forgotten as far as husband is concerned, but at least I have seen them and been there. York Minster was the greatest. - could have spent a week, but k was bored and tired so didn't stay too long - he used to love such places, it seems so sad. Doesn't remember any of it this evening, only there this afternoon.

Why do we do it? Because we must, I suppose, while we can. He has slept through most of the car journeys, missing the scenery and wondering why I interrupt him to say look, look! And no, we can't talk about it at the end of the day because it is all gone.

Still lonely, still intensely sad, but determined to keep on trying while it is possible. What will I do when we can't? Thank you everyone, let's see if we get any sleep tonight (not good so far, woken 5 or 6 times a night to know where we are. Why does it matter?).

I hate Alzheimeimers - as my husband says - I'd like to get that ba****rd!




I

 

[caqqufa]

We are still here - home tomorrow. I decided I could surely cope, and it would be good to see new places. I hadn't anticipated the lavatorial problems. This seems somewhat new (constantly "missing" at home, but sort of coping, but much worse since away. Thank goodness for Radar keys, though still much time spent floor mopping with toilet paper, not very adequate). And now some other oroblems too, won't go into detail. I do hope when we are home things will be easier.

Thank you all for all your amazing support and comments. Grandma Barb, I so feel for you, your story has such resonance. Life is a bummer.

We've been lots of places, seen lots of things, all rapidly forgotten as far as husband is concerned, but at least I have seen them and been there. York Minster was the greatest. - could have spent a week, but k was bored and tired so didn't stay too long - he used to love such places, it seems so sad. Doesn't remember any of it this evening, only there this afternoon.

Why do we do it? Because we must, I suppose, while we can. He has slept through most of the car journeys, missing the scenery and wondering why I interrupt him to say look, look! And no, we can't talk about it at the end of the day because it is all gone.

Still lonely, still intensely sad, but determined to keep on trying while it is possible. What will I do when we can't? Thank you everyone, let's see if we get any sleep tonight (not good so far, woken 5 or 6 times a night to know where we are. Why does it matter?).

I hate Alzheimeimers - as my husband says - I'd like to get that ba****rd!




I

I so feel for you because I know exactly how you feel. Been reading all the posts and realised that we all go through the same experiences. We remain so long in denial, don't we? I'll share my bit too: as a last hope for a holiday I thought a week's cruise would be perfect, especially since hubby is ex-navy, so he would be happy to go back to sea! Ended up most of the week in the cabin, as he wanted to leave if he's not given a job!! thankfully had booked a cabin with a balcony so I could enjoy the views, he just sulked. End of holidays. Yes dear it can be very lonely but realised that accepting what is and going with 'their' flow can make life that bit easier. big HUGS xx

 

[Jinx]

Jenny, just catching up and sympathising with your dilemma. The last holiday my husband and I had was a visit to Felixstowe to visit some old friends. It wasn't easy, OH got very confused about what was going on. He woke up more than usual and all in all plus a very long journey to and from Wales with stops at services, it wasn't the most successful. BUT there were some good bits, as there were in other holidays whilst he was suffering from dementia and now that he is gone I have those memories and photos so I would say keep going until it's just impossible. xxx


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