Pulling everything together

[Grahamstown]

He has told his sisters about his diagnosis of mild Alzheimer’s now and I am very proud of him for being able to do that. He has sort of forgotten it now. Even though I have been talking about his memory loss for some time, it came as a terrible shock to them. I have finally had a message from his sister in SA and she is very supportive and wishes she could come and help. I don’t think Alzheimer’s is like that though, the only serious help is to come and take over for a bit to give a carer a break. Not practicable for most people. Any thoughts on that?

 

[margherita]

the only serious help is to come and take over for a bit to give a carer a break.

My husband does not think I need a break because he doesn't realize how demanding and frustrating living with him is.

 

[Grahamstown]

My husband does not think I need a break because he doesn't realize how demanding and frustrating living with him is.

I certainly don’t think he would like it either if I did take a break but that sister would probably be acceptable if anyone would, but since she lives in South Africa and hasn’t much money that is unlikely. One can only dream.

 

[margherita]

I certainly don’t think he would like it either if I did take a break but that sister would probably be acceptable if anyone would, but since she lives in South Africa and hasn’t much money that is unlikely. One can only dream.

So, can we only hope to be set free by some miracle one day?

 

[Grahamstown]

We visited friends today for coffee and a walk. He managed to enjoy it and be part of the group but when we got home he was exhausted and he had to lie down for an hour to recover. The mental strain was worse than the physical. If I hadn’t had the experience of everyone else on TP I would have been very shocked and upset about this strange situation but I was quite relaxed and understood. In the meantime one of our friends was full of ideas for stimulating him and things to do as if he was perfectly fine and I was struck by the contradiction that if he was perfectly fine he would be as active as he used to be, but because he is not perfectly fine, he is unable to be enthusiastic about anything. Socialising and having to keep up a front is very exhausting for PWD.

 

[Grahamstown]

Feeling very low this afternoon as the memory loss seems bad today, but I think it goes up and down a bit anyway. I feel that he has dipped again both physically and mentally and it is getting more and more obvious that I cannot leave him much. I am beginning to feel more entrapped than ever. Our friend this morning commented on how insecure he was when I went back to the car to put something back in it while he and she walked on. He wouldn’t go on until I caught up. It makes my heart sink. I also nearly had a meltdown when he said he was going out to buy a bottle of rosé, and he didn’t mean the non alcoholic variety. I managed to divert him and remind him that we are going away for a holiday and didn’t need anything new. This constant vigilance is very tiring.

 

[maryjoan]

He returned after about 45 minutes and went straight for the wine bottle, I left the room and went upstairs where he followed me and I said he should not drink wine but have a tonic water. He actually went down and got that but just had to have a small glass of wine later watching TV. I didn’t say anything but didn’t get angry either. He is quite merry and has gone to bed happy. The difficulty is the nightly battle to moderate his intake which I dread and is very wearing. I have very little alcohol in the house now except for what he can go out and buy.

My OH has vascular and alcoholic dementia - about 50 years worth of steadily increasing drinking. We have only been together for less than 8 years. I was SO angry at him for getting himself into this state of health. He actually gave up the drink for a couple of years when he was so physically ill that he had no choice - in hospital for 6 weeks with Crohn's - now I allow him to buy alcohol - I am in charge of his finances as he can no longer manage them.
He goes to Aldi once a week, and buys his yoghurts, and then, I think because he remembers buying beer in the past, he buys some and brings it home - but it is just sat there. Very occasionally he will have a can before supper. Even the Dr has said - let him, he is on a limited life anyway.
My point being, there are no answers really to most dementia related questions.

We are all up a gumtree with no ladder to help us get down - I have told OH that if he brings just 1 bottle of the hard stuff into the house again, I am packing my suitcase and leaving him. He believes that I will - he is right!!!!


Good Luck

 

[Grahamstown]

We have come away on holiday and so far my cruise idea is successful and he is very happy but it has actually shown me how very bad his memory is as I see it gradually disappearing. He cannot remember where we are, what we’re going to do, how long we are staying. So all the worst aspects of memory loss are highlighted by moving out of a familiar environment. Everything is lovely and the only fly in the ointment is the constant offering of wine at dinner. However I have the same problem at home and I would rather have a holiday than never go anywhere. I have got him through the airport and safely installed in a room which he loves. The constant stimulation of new sights is good because that’s the main area of interest now and it makes a change from the constant pointing out of the same trees and buildings at home. So is it worth all the effort and constant vigilance to bring him away? So far so good! He did get lost at Gatwick going to the men’s loos but just as I was about to send for help he came trotting from the opposite direction laughing and saying he went the wrong way. It was my fault because I didn’t go with him to the entrance but waited with the bags. Never again.

 

[Hopeful123]

We have come away on holiday and so far my cruise idea is successful and he is very happy but it has actually shown me how very bad his memory is as I see it gradually disappearing. He cannot remember where we are, what we’re going to do, how long we are staying. So all the worst aspects of memory loss are highlighted by moving out of a familiar environment. Everything is lovely and the only fly in the ointment is the constant offering of wine at dinner. However I have the same problem at home and I would rather have a holiday than never go anywhere. I have got him through the airport and safely installed in a room which he loves. The constant stimulation of new sights is good because that’s the main area of interest now and it makes a change from the constant pointing out of the same trees and buildings at home. So is it worth all the effort and constant vigilance to bring him away? So far so good! He did get lost at Gatwick going to the men’s loos but just as I was about to send for help he came trotting from the opposite direction laughing and saying he went the wrong way. It was my fault because I didn’t go with him to the entrance but waited with the bags. Never again.

 

[Hopeful123]

I do hope your cruise is a success Grahamstown. I took my husband on one 5 years ago. On our last day, sitting by the pool, he needed the toilet,it was very near us so I let him go alone, unfortunately he exited thro a different door, couldn’t remember we were at the poolside and it was an hour & half before I found him. So just be aware of this problem. Apart from that, it was a lovely holiday. I agree with you, the holiday is really for you, it’s worth any minor problems just to have a change of scenery & have meals made for you. So enjoy

 

[Grahamstown]

T

I do hope your cruise is a success Grahamstown. I took my husband on one 5 years ago. On our last day, sitting by the pool, he needed the toilet,it was very near us so I let him go alone, unfortunately he exited thro a different door, couldn’t remember we were at the poolside and it was an hour & half before I found him. So just be aware of this problem. Apart from that, it was a lovely holiday. I agree with you, the holiday is really for you, it’s worth any minor problems just to have a change of scenery & have meals made for you. So enjoy

Thanks for the encouragement @Hopeful123 it is a bit of a gamble and I was apprehensive when he was simply unable to remember where we were going or what we were going to do and he kept talking about driving to the coast to stay in a hotel. Maybe that’s the damaged brain trying to make sense of the information. He can’t quite understand that we are staying here for a while and keeps asking if we are moving on. I guess I am lucky to be able to come away at all and who knows how long I shall be able to bring him.

 

[yorkie46]

Hope your cruise goes well. I wish we could have a holiday together again but my husband now refused to go anywhere. He doesn't have a diagnosis of dementia but he finds every excuse under the sun for not going. Deep down I think it's just that he likes the security of home. He says he's not comfortable anywhere else. If course the knock on effect is that it's difficult for me to go on holiday. I really need a break, I'm having a week visiting family in the summer with my daughter and grandson. I've been in the verge of booking something for the two of us but at the last minute he decided it isn't a good idea so we don't go. I get so sick of the same four walls and when we do go out it's for such a short time and always to the same places.

 

[Pipeth]

T

Thanks for the encouragement @Hopeful123 it is a bit of a gamble and I was apprehensive when he was simply unable to remember where we were going or what we were going to do and he kept talking about driving to the coast to stay in a hotel. Maybe that’s the damaged brain trying to make sense of the information. He can’t quite understand that we are staying here for a while and keeps asking if we are moving on. I guess I am lucky to be able to come away at all and who knows how long I shall be able to bring him.

Hope all goes well Grahamstown, a change is as good as a rest.

 

[Pipeth]

Hope your cruise goes well. I wish we could have a holiday together again but my husband now refused to go anywhere. He doesn't have a diagnosis of dementia but he finds every excuse under the sun for not going. Deep down I think it's just that he likes the security of home. He says he's not comfortable anywhere else. If course the knock on effect is that it's difficult for me to go on holiday. I really need a break, I'm having a week visiting family in the summer with my daughter and grandson. I've been in the verge of booking something for the two of us but at the last minute he decided it isn't a good idea so we don't go. I get so sick of the same four walls and when we do go out it's for such a short time and always to the same places.

Hope your cruise goes well. I wish we could have a holiday together again but my husband now refused to go anywhere. He doesn't have a diagnosis of dementia but he finds every excuse under the sun for not going. Deep down I think it's just that he likes the security of home. He says he's not comfortable anywhere else. If course the knock on effect is that it's difficult for me to go on holiday. I really need a break, I'm having a week visiting family in the summer with my daughter and grandson. I've been in the verge of booking something for the two of us but at the last minute he decided it isn't a good idea so we don't go. I get so sick of the same four walls and when we do go out it's for such a short time and always to the same places.

Hi Yorkie, sounds like we are in the same boat, my OH told the doctor that he doesn't want to go anywhere or see anyone. He gets so anxious if we get invitations or I suggest a holiday. We also go to the same places, town shopping, garden centre, local Chinese and pub, for as long as it takes then back home. I have made progress and have been going to a weekly yoga class but he doesn't like me going. Just have to make the best of things at home, we love our gardening and have been enjoying the sunshine today. Take care.

 

[yorkie46]

Hi Pipeth
Yes it's difficult to go to anything or anywhere different. As you say it's town shopping every Saturday morning and garden centres. We luckily have a very nice arbitration and garden centre not far away which he enjoys but our walls follow the same route everytime. He can't walk far without stopping or sitting due to an historic back and ankle injury which make it a very slow walk. If we're invited anywhere different he often says he doesn't want to go or cries off at the last minute.
I do try to get up to York to see my family at least once a year. He doesn't like me going and I worry when I'm away. I have to phone every day. I am it He process of instigating a carers assessment in the probably vain hope I can get someone to check I him when I'm not here, I have my doubts he will accept it if I do manage to get anything. I told him about the assessment when I started the process, just been called by someone regarding the next step but if course he knew nothing about it and I hadn't told him.I
I have also applied to do voluntary work at the local hospital. Like you he doesn't like me going out but I need to for my own sanity. There'll be plenty of time later when I can't!!

 

[yorkie46]

Well that must be a record, just been to garden centre, there and back in just over an hour! Bought two trays of bedding and two geraniums in pots. He clearly didn't want to stay for a cup of tea. I'm feeling more like an unpaid chauffeur every day!
Hope he can manage to get it all planted without mishap. He told me that he'd fallen in the garden when I was out two days ago!

 

[Grahamstown]

Our cruise is going well but it is cruelly exposing his memory loss which seems significantly worse when compared to a few weeks ago, unless I need to look back at earlier posts to remind myself. Being in a new place does mean that his poor brain is having to process new stuff all the time and it goes wrong. On the plus side he is loving the wonderful views and new things to look at, does get exhausted but probably not a lot more than at home, feels very comfortable in his accommodation and is eating much better, having said that he is not hungry. The main downside, as my TP friends will guess, is his obsession, and it is that now, with ‘having a drink’, even though he had non alcoholic beer last night and thought he felt quite tipsy! He is starting to get quite cross when I say no now, but if I can get him through to 7-8, he subsides. It is no better at home so I just have to put up with it. I made the right decision about excursions keeping them short and easy. I got chatting with a lady last night who is with a friend because her husband died last year, having had a precipitate decline with Alzheimer’s. We had quite a chat and she was most sympathetic because ‘she knew’, as those of us with PWD do. So it has proved a good choice of holiday so far, within its limitations. He is no longer my husband as I knew him, which the requirements of holidaying have exposed to make my heart bleed at times. I needed to write all this to get it out of my system and I know that my compassionate communication would be nil without TP, and boy do I need it now.

 

[imsoblue]

I've been missing you @Grahamstown . So happy you are cruising. After reading the adventures on @Amethyst59 abut the rough water I was scratching "cruise" off my things-to-do list. Please keep writing. I understand. We all do.

 

[Grahamstown]

I got talking to a fellow passenger today and she said that we were both looking after children aged about 5. We did laugh and chat a bit about our OHs. I noticed that she leaves her OH to muddle along as best he can, so she has obviously had enough. I have now met 2 other couples of whom one partner has dementia and they are in worse physical shape than my OH, although I have to say that I notice that he is deteriorating fast. So it seems that under the right circumstances and with a partner who is suitable, cruising is an option.

 

[imsoblue]

OH wouldn't cruise when he was 100% physically and mentally capable. Ha! Keep on having some fun!