Help needed please

[Pipeth]

My husband diagnosed with mild cognitive impairment in 2015, had MRI November 14th 2017 with result still being waited for. Memory is worse and behaviours affecting our lives and family life. Feeling total isolated and worn out at the moment. I feel I have made a big mistake, in that we saw a bungalow close by to our existing home, one that we would have purchased four years ago if it had been on the market at that time. We agreed to go and have a look and he loved it, a larger garden and a older property with traditional layout, our bungalow at the moment is open plan which we have found difficult to live with, my husband has never really settled here. We viewed three times, he was happy and excited each time so decided to put our property on the market. It sold within a week and we agreed to purchasing the older bungalow. Since then my husband has been happy during the day about the move but woke up during the night and in the mornings not wanting to move. He has walked around to the everyday to check it out again and come back happy with the move once more. Yesterday he went round during the day and came back and after talking we agreed to pull out, he then went again in the evening and came back saying he was happy again, he had met the man next door and walked around the area and loved the garden. I am now waiting for him to wake up 10am, after another sleepness night to see how he feels about it today. I am totally confused as to what to do, is this another stage? Does he have dementia or is this over anxiety? Sorry for the long explanation.

 

[Pipeth]

Husband has got up in anxious state, saying he is still unsure of what to do. After going over with him all the concerns he has raised this week and ticking them off as not really being a problem and him saying he is just being 'stupid', getting upset saying he doesn't understand what is happening, that he feels confused. It seems to me we will have to pull out of the sale, even in my heart I know he would have loved the older bungalow and garden and in my head it would have been an answer to all the angst he has about the home we have now; the noisy neighbours iin the summer, lack of privacy in his garden, the open plan living room, the repairs that need doing already, the lack of space for family to visit (thats my big one).... But I think it should be a case of the devil we know will be better the the devil we don't know. It has helped writing this ... Just need to pluck up the courage to ring the estate agent now without getting upset. I don't care where we live now just want my husband to be as happy as he can be.

 

[canary]

Hello @Pipeth .
Whether your husband has MCI or dementia, either way his brain is not working properly and he is finding extremely hard to make decisions. I remember when OH had to make an important decision - he kept changing his mind so much that I feared that he would never be able to finally decide.

If this new bungalow is going to be better for you and your OH then I would just push ahead with it. Sometimes you have to make decisions for them - and then persuade them that it is their own decision , so I would stop asking him how he feels about it and just assume that he is in agreement. If he does turn out to have dementia it will become harder for him to move as time goes on. He is bound to be unsettled and confused - moving home is stressful at the best of times, but I would do it now before he is no longer able to cope.

 

[Pipeth]

How long does it take to get the result of a MRI ? Am I being unreasonable in expecting a result by now, (MRI in 14th November 2017). I am so angry about the wait as at the last appointment we were told the first assessment was not available so we have basically started again. In the meantime we have become more and more isolated from leading a normal life. Our children are being affected by not getting visits from us, We are missing out on family occasion and seeing our grandchildren, because the open plan living, he can't put up with the noise the children make, we couldn't go to christmas dinner at my daughters because he couldn't handle the company..... sorry I am ranting.... need a break.

 

[Pipeth]

Hello @Pipeth .
Whether your husband has MCI or dementia, either way his brain is not working properly and he is finding extremely hard to make decisions. I remember when OH had to make an important decision - he kept changing his mind so much that I feared that he would never be able to finally decide.

If this new bungalow is going to be better for you and your OH then I would just push ahead with it. Sometimes you have to make decisions for them - and then persuade them that it is their own decision , so I would stop asking him how he feels about it and just assume that he is in agreement. If he does turn out to have dementia it will become harder for him to move as time goes on. He is bound to be unsettled and confused - moving home is stressful at the best of times, but I would do it now before he is no longer able to cope.

Thank you canary, as I have just finished reading this reply my husband has just sat down opposite and said I am still trying to persuade myself what to do. It is hard isn't it when someone who has always been so strong and supportive becomes this way. I am sacred that if we move and things are wrong there for him he will become worse and aggressive. My head is spinning I will leave decision for today once again, just feel sorry for stringing along other person who wants to buy our bungalow. Thank you again.

 

[karaokePete]

Hello @Pipeth. In my area (N Ireland) the result of a scan takes just a few weeks. Would it be worth a call to the GP?
My wife is most confused first thing and will change her mind more often than her clothes. I too think it is a matter of taking control. Your husband may be happy with that if he trusts you and has at least been consulted, as he has in this case.
Have you got things like Power of Attorney sorted?

 

[Beate]

Maybe just stop going over and over it with him? It looks like it's too much for him having to make a decision, it's confusing and making him anxious, and your goal is always to reduce anxiety.
I know you want to involve him but if it gets too much for him, just stop. Reassure him that you've got it in hand, that he is safe with you and everything will turn out well.
If you know in your heart that the new bungalow is ideal, go for it - don't fret too much about him and his ever changing reactions. Take charge.

 

[Pipeth]

Hello @Pipeth. In my area (N Ireland) the result of a scan takes just a few weeks. Would it be worth a call to the GP?
My wife is most confused first thing and will change her mind more often than her clothes. I too think it is a matter of taking control. Your husband may be happy with that if he trusts you and has at least been consulted, as he has in this case.
Have you got things like Power of Attorney sorted?

Thank you for your reply KarokePete, I am just coming to terms with being in control but when I do he becomes verbally aggressive which is taking me time to adjust to. I have approached him about POA as doctor suggested and he has agreed to it because of his memory problems. I think he would agree to the move if I insisted, it's justits seems the first big decision I have to make without him. I have been to GP and she was surprised at the length of time the MRI is taking and advised me to go back to memory clinic, also gave me a counselling helpline; I told her I have this forum, it is so helpful talking to people such as yourself.

 

[Pipeth]

Maybe just stop going over and over it with him? It looks like it's too much for him having to make a decision, it's confusing and making him anxious, and your goal is always to reduce anxiety.
I know you want to involve him but if it gets too much for him, just stop. Reassure him that you've got it in hand, that he is safe with you and everything will turn out well.
If you know in your heart that the new bungalow is ideal, go for it - don't fret too much about him and his ever changing reactions. Take charge.

Thank you Beate, Just need to get stronger myself, sleepless nights not helping. Just have to get my own head around the fact that he cannot make a decision and accept the changes in him. Thank you have made me feel more confident about the situation.

 

[love.dad.but..]

My mum wanted to move house..A big garden getting too much for her as dad only pottered with growing things rather than the donkey work. Dad on the other hand didn't. Clearly looking back his dementia had already affected his ability to make decisions and think logically about pros and cons....so they didn't move then mum died suddenly...Dad declined to the point of needing 24/7 nursing home care and the house was sold. I know mum really would have liked to have moved but left it too late and regretted it. Maybe remove the anxiety from your OH and decide yourself that all the benefits for you both in making the original decision haven't changed and in fact maybe more relevant now with changes to your OH.

 

[karaokePete]

Thank you for your reply KarokePete, I am just coming to terms with being in control but when I do he becomes verbally aggressive which is taking me time to adjust to. I have approached him about POA as doctor suggested and he has agreed to it because of his memory problems. I think he would agree to the move if I insisted, it's justits seems the first big decision I have to make without him. I have been to GP and she was surprised at the length of time the MRI is taking and advised me to go back to memory clinic, also gave me a counselling helpline; I told her I have this forum, it is so helpful talking to people such as yourself.

I'm glad to be of help. With regard to the decision the agitation may be because he thinks you are just taking over. We always have to remember that our loved one is still there, although maybe not able to make decisions or express themselves so well any more. That's why I mentioned consulting him in my earlier post. Give him the usual part ownership by discussing issues and then maybe finishing with something like "So we are agreed on that then.". this will enable you to make the decision and only require a simple yes/no in reply. Also I found with my wife that I can't discuss more than one thing at a time as if I give her a list she can't do anything at all - even a decision to take a list one item at a time can be beyond a PWD (Person/People with dementia).
I hope this helps. Keep posting when you have a problem or just want to moan/vent as you will get answers and understanding.

 

[Pipeth]

My mum wanted to move house..A big garden getting too much for her as dad only pottered with growing things rather than the donkey work. Dad on the other hand didn't. Clearly looking back his dementia had already affected his ability to make decisions and think logically about pros and cons....so they didn't move then mum died suddenly...Dad declined to the point of needing 24/7 nursing home care and the house was sold. I know mum really would have liked to have moved but left it too late and regretted it. Maybe remove the anxiety from your OH and decide yourself that all the benefits for you both in making the original decision haven't changed and in fact maybe more relevant now with changes to your OH.

Thank you, It is really helpful hearing others experiences, I am going to talk to our daughters and sons this weekend as their support in the move would make a big difference, however they do not live close and all have busy lives. Thank you so much for sharing .

 

[Pipeth]

I'm glad to be of help. With regard to the decision the agitation may be because he thinks you are just taking over. We always have to remember that our loved one is still there, although maybe not able to make decisions or express themselves so well any more. That's why I mentioned consulting him in my earlier post. Give him the usual part ownership by discussing issues and then maybe finishing with something like "So we are agreed on that then.". this will enable you to make the decision and only require a simple yes/no in reply. Also I found with my wife that I can't discuss more than one thing at a time as if I give her a list she can't do anything at all - even a decision to take a list one item at a time can be beyond a PWD (Person/People with dementia).
I hope this helps. Keep posting when you have a problem or just want to moan/vent as you will get answers and understanding.

Thank you, will keep posting.

 

[Dianneb]

Dementia/ALZ definitely has a strange affect on the workings of the brain. My Mom has been living in her current home for over 40 years and she is convinced she is someplace else. She keeps asking why every 'stick of furniture' has been moved to this 'house' and she will call her friend to come pick her up as she wants to go 'home'. It is not unusual for her to pack her things into bin bags and have them by the front door. Overall, she is happy even when confused. We often, instead of trying to convince her that she is home, will ask her about her photos (which are all over the place lol) and that will often put her back at 'home'. As mentioned my another member, if moving to this new bungalow will help make life easier for you then you should do it. I'm sure there will be a sense of familiarity once you move because of the things you will take with you. We've been talking to my Mom (82 years old) about moving into assisted living. She is on a waiting list but bring it up into conversations and, for the most part, she says she is looking forward to her new apartment. All the best to you and your partner.

 

[Pipeth]

Dementia/ALZ definitely has a strange affect on the workings of the brain. My Mom has been living in her current home for over 40 years and she is convinced she is someplace else. She keeps asking why every 'stick of furniture' has been moved to this 'house' and she will call her friend to come pick her up as she wants to go 'home'. It is not unusual for her to pack her things into bin bags and have them by the front door. Overall, she is happy even when confused. We often, instead of trying to convince her that she is home, will ask her about her photos (which are all over the place lol) and that will often put her back at 'home'. As mentioned my another member, if moving to this new bungalow will help make life easier for you then you should do it. I'm sure there will be a sense of familiarity once you move because of the things you will take with you. We've been talking to my Mom (82 years old) about moving into assisted living. She is on a waiting list but bring it up into conversations and, for the most part, she says she is looking forward to her new apartment. All the best to you and your partner.

Thank you for reply Dianneb I think we are in the early stages here as this is my first experience of seeing the affects of MCI on making big decision. I think if my husband could sleep and wake up in the bungalow he would be happy, it is the interim period before the move and the affects of the high level of anxiety he has on his health, he has other health issues to consider. Thank you again your shared experience is much appreciated, I hope your Mom 's move happens very soon and she will be comfortable there.

 

[Tricot]

Hello, just wanted to encourage you to make the move; especially as you say your family aren't visiting because your husband can't tolerate the noise the children make in your open plan environment. You will need your family around you. I know moving house is a big decision to make - currently in the same situation - but really believe the sooner the better.

Hope you get the MRI results soon. The waiting for diagnosis is awful.

 

[yorkie46]

Thank you for reply Dianneb I think we are in the early stages here as this is my first experience of seeing the affects of MCI on making big decision. I think if my husband could sleep and wake up in the bungalow he would be happy, it is the interim period before the move and the affects of the high level of anxiety he has on his health, he has other health issues to consider. Thank you again your shared experience is much appreciated, I hope your Mom 's move happens very soon and she will be comfortable there.

Hi, I can empathise with your situation to some degree. My husband does not have a diagnosis yet despite three visits to the memory clinic but he has considerable difficulties in various areas, one of which is decision making. About four years ago we considered moving into sheltered accommodation in a private setting. We went to look round at the show flat and others, we had our bungalow valued. As the flats were new build we didn't have to make an immediate decision. We had another visit and met some of the new residents. We talked it over with our daughter who was in full agreement and I took her to look round. Then it ghost to the point when there was only one suitable flat left so a decision needed to be made. We went and did some measuring and decided it would suit us. We talked with the sales staff to find out what the next step would be. After we'd been home and talked it through again I asked if I should phone to arrange a time to return to pay the deposit and start the ball rolling. It was then that everything went wrong. Oh no, he said. I'm not moving, I only went along with it because you were so keen, I never want to move from here!!! I think that was when I truly realised that things weren't right. There had been other issues for about three years before that but this really cemented it in my mind. I was devastated. I still think we should have moved. As it is we are left in a bungalow on a hill. He is becoming less and less able physically and mentally so the upkeep is a constant worry to me but he doesn't seem to see that this could devalue the place. I'm not physically able to do it all after two hip replacements. I refuse to try to do the gardening because I end up suffering for it. I now have problems with my hands which makes it difficult and painful with the hand brake and gear lever on the car. I'd like to change to an automatic and we're going through the same process again. One minute he agrees with everything I say, then it's well let's see if the surgery makes it easier (but that isn't going to be until the summer). We're going to the garage tomorrow to look! Watch this space. I agree about taking control but its so very hard to do with no diagnosis to back you up. Good luck!

 

[Pipeth]

Hello, just wanted to encourage you to make the move; especially as you say your family aren't visiting because your husband can't tolerate the noise the children make in your open plan environment. You will need your family around you. I know moving house is a big decision to make - currently in the same situation - but really believe the sooner the better.

Hope you get the MRI results soon. The waiting for diagnosis is awful.

Thank you for your reply Tricot, having another night up, husband anxiety is the worst it has been. I am thinking I have left it to late to make a move.

 

[Pipeth]

Hi, I can empathise with your situation to some degree. My husband does not have a diagnosis yet despite three visits to the memory clinic but he has considerable difficulties in various areas, one of which is decision making. About four years ago we considered moving into sheltered accommodation in a private setting. We went to look round at the show flat and others, we had our bungalow valued. As the flats were new build we didn't have to make an immediate decision. We had another visit and met some of the new residents. We talked it over with our daughter who was in full agreement and I took her to look round. Then it ghost to the point when there was only one suitable flat left so a decision needed to be made. We went and did some measuring and decided it would suit us. We talked with the sales staff to find out what the next step would be. After we'd been home and talked it through again I asked if I should phone to arrange a time to return to pay the deposit and start the ball rolling. It was then that everything went wrong. Oh no, he said. I'm not moving, I only went along with it because you were so keen, I never want to move from here!!! I think that was when I truly realised that things weren't right. There had been other issues for about three years before that but this really cemented it in my mind. I was devastated. I still think we should have moved. As it is we are left in a bungalow on a hill. He is becoming less and less able physically and mentally so the upkeep is a constant worry to me but he doesn't seem to see that this could devalue the place. I'm not physically able to do it all after two hip replacements. I refuse to try to do the gardening because I end up suffering for it. I now have problems with my hands which makes it difficult and painful with the hand brake and gear lever on the car. I'd like to change to an automatic and we're going through the same process again. One minute he agrees with everything I say, then it's well let's see if the surgery makes it easier (but that isn't going to be until the summer). We're going to the garage tomorrow to look! Watch this space. I agree about taking control but its so very hard to do with no diagnosis to back you up. Good luck!

Oh! Yorkie thank you for sharing your experience, your missed opportunity for a move is exactly what is happening here, I am sitting here tonight stunned by the last few days. I am lucky in that where we are now is suitable for disability access and everything we need is in walking distance when my husband stops driving, which I think will be happening sooner rather than later. The worst thing is the open plan layout and not having family to stay over. You have made me think ahead I have health issues (I can empathies with you about painful hands, I have arthritis and carpal tunnel) which will probably make it difficult in the future, perhaps the larger garden at the other bungalow would be a problem later and it is an older property that could need more upkeep. Thank you this is helping a great deal towards making my decision, my husband was awake at 2 a.m saying " We have got to tell those people we don't want to move." As much as I would like to move to solve the problems he has had here, I think it is to risky and to late, things could just get a lot worse and as you have said it is hard without a diagnosis. Good Luck at the garage tomorrow. Take care.

 

[Spamar]

This sounds a familiar story! Dementia, for late OH, arthritis for me!
Have you thought of building on to your bungalow? When we moved here we did a lot of alterations to help me and one of them was adding a conservatory. On family occasions and parties, OH would ‘hold court’ out there and receive a couple of people at a time. Then people would come into me and say, he’s really well, chatting away!! Another advantage was that I would say, here’s W and L to see you, which got over the problem of him not knowing to whom he was conversing.
Yorkie, after my hip and knee replacements I was fine, working, which included a lot of walking, gardening, and other things. It was only three or so years later that things got awkward. Arthritis in the feet is not to be laughed at! I had carpal tunnel as well, but after being told both wrists would need doing, I didn’t have much trouble, so they weren’t done. Then one day last year I spent the whole day doing paperwork and my wrists really ached. Worked out that I had stopped doing a lot of paperwork around the time my wrists had cleared up!
Now it’s my cervical spine that’s the main problem, which impinges on the shoulder joints.
I was hoping that I would be able to get back to my hobbies after caring finished, but OA just got worse! I can still drive - just - but walking is not on!
Good luck, both of you!