Pulling everything together

[imsoblue]

Please add me to your circle of "friends". It's not a circle I want to be in, but am so glad y'all started it! There's no one to understand except the people I've read on TP. My husband has two crippling issues: Primary Progressive Freezing of Gait (a Parkinson's Plus disease) which was diagnosed November, 2016. He stopped working a full time job just last May, but has now declined to a wheel chair, and a dementia diagnosis in December. I have had to hire a sitter 3 days a week as a I work full time. I have 3 grown sons, one lives in town. He has two daughters who live 2 hours away and one comes to visit every Thursday while the other doesn't contribute much. Strangely, it's the one who comes who adds additional stress to my situation. I sent a text to all the children a few weekends ago with an update of what had happened in the past 4 days: fell out of bed (for the 4th time), napping at 5:30PM, falling more and I'm not able to get him up, etc. That daughter demanded I get him to a hospital! Duh, this is what he does. This is what is diagnosis is about. She is insistent he attend an inpatient rehab hospital for seven days in her town!!??? I'm so worried about him being alone in a hospital room with the dementia. So, I'm learning not to give updates to her. I realize all I want to hear from someone is "I hear you Sista!" but from her, I get push back and I feel like I'm wrong in complaining. (She says stuff like: "Of course, he's frustrated, you would be too." and "I haven't noticed that trait in him.") So I'm going to tell TP my latest heart ache. I took him to the grocery on Easter Sunday since we hadn't been out or had company all weekend. He rides in the scooters they provide. Well, he ran into a bread table and all the loaves fell on the floor. When we got to a table of wines I had to remind him to drive carefully. I caught myself having to say more than once (like a mother to a child), "Stop. Stop Stop." Sigh. I guess he can no longer drive around the grocery. (He hasn't been allowed to drive a car since September.) When we got home, he was quite sullen so I suspect he also knows that. He also finally verbalized his pain. He used to say he didn't want to retire and die as quite a few of our friends did. Well, he said he retired and look what happened.
Deep breath. This is my first post on TP. I have been reading awhile. Thank you for being there.

 

[Grahamstown]

Please add me to your circle of "friends". It's not a circle I want to be in, but am so glad y'all started it! There's no one to understand except the people I've read on TP. My husband has two crippling issues: Primary Progressive Freezing of Gait (a Parkinson's Plus disease) which was diagnosed November, 2016. He stopped working a full time job just last May, but has now declined to a wheel chair, and a dementia diagnosis in December. I have had to hire a sitter 3 days a week as a I work full time. I have 3 grown sons, one lives in town. He has two daughters who live 2 hours away and one comes to visit every Thursday while the other doesn't contribute much. Strangely, it's the one who comes who adds additional stress to my situation. I sent a text to all the children a few weekends ago with an update of what had happened in the past 4 days: fell out of bed (for the 4th time), napping at 5:30PM, falling more and I'm not able to get him up, etc. That daughter demanded I get him to a hospital! Duh, this is what he does. This is what is diagnosis is about. She is insistent he attend an inpatient rehab hospital for seven days in her town!!??? I'm so worried about him being alone in a hospital room with the dementia. So, I'm learning not to give updates to her. I realize all I want to hear from someone is "I hear you Sista!" but from her, I get push back and I feel like I'm wrong in complaining. (She says stuff like: "Of course, he's frustrated, you would be too." and "I haven't noticed that trait in him.") So I'm going to tell TP my latest heart ache. I took him to the grocery on Easter Sunday since we hadn't been out or had company all weekend. He rides in the scooters they provide. Well, he ran into a bread table and all the loaves fell on the floor. When we got to a table of wines I had to remind him to drive carefully. I caught myself having to say more than once (like a mother to a child), "Stop. Stop Stop." Sigh. I guess he can no longer drive around the grocery. (He hasn't been allowed to drive a car since September.) When we got home, he was quite sullen so I suspect he also knows that. He also finally verbalized his pain. He used to say he didn't want to retire and die as quite a few of our friends did. Well, he said he retired and look what happened.
Deep breath. This is my first post on TP. I have been reading awhile. Thank you for being there.

It is the combination of several things that is so difficult for anyone, other than the person who is with them all time, to understand. They only see bits and pieces not the whole picture so give this bit of advice or that bit of advice. People mean well but I don’t think most people can possibly understand. You are the expert in your own situation which is what makes it hard to cope but everyone here does know something and can give help and tips. I don’t have some the problems you have but I do have others which someone else will have. Keep posting and keep strong.

 

[imsoblue]

It is the combination of several things that is so difficult for anyone, other than the person who is with them all time, to understand. They only see bits and pieces not the whole picture so give this bit of advice or that bit of advice. People mean well but I don’t think most people can possibly understand. You are the expert in your own situation which is what makes it hard to cope but everyone here does know something and can give help and tips. I don’t have some the problems you have but I do have others which someone else will have. Keep posting and keep strong.

Thanks for the great advice. I appreciate it tremendously. We have had a sitter for 2 days and this afternoon I found out she was leaving us. She's not comfortable driving him around as she doesn't drive well. A new one comes Wednesday. I cried like she had been a member of my family...and I only knew her 2 days! I had to decide to whether the driving him around was that important. I figured it was.

 

[Amy in the US]

Would she still be willing to be a sitter, but just not do transport?

 

[carolynp]

Would she still be willing to be a sitter, but just not do transport?

Oh Amy good question! So hard when these blows occur to separate out the different strands of a situation. C. xxx

 

[Amy in the US]

I thought it couldn't hurt to ask, as there likely will be times when company/a sitter is needed, but transportation is not. It's so hard to get help and support and I hope you can work something out, as it must be terribly stressful. Best wishes.

 

[Grahamstown]

There are times when the relentlessness of trying to keep your loved one safe gets to you. I keep thinking that I have sorted that out so it will no longer be a problem, but it is only 24 hours later. I don’t usually wake and worry these days but tonight’s the night. I count my blessings and carry on.

 

[canary]

Oh @Grahamstown I have just seen the time that you posted. I hope that you managed a lie-in and/or you can nap during the day.
Dementia is like that - I heard it likened to herding cats! You no sooner think youve got things organised than everything changes and you have to start again.

 

[carolynp]

Oh @Grahamstown I have just seen the time that you posted. I hope that you managed a lie-in and/or you can nap during the day.
Dementia is like that - I heard it likened to herding cats! You no sooner think youve got things organised than everything changes and you have to start again.

Yes exactly!

 

[Grahamstown]

Such support is wonderful. Yes I turned my alarm off and the release of posting helped me to get back to sleep and I got up at 8.45, but OH slept in until 10 so he was exhausted after Easter socialising. He regards social occasions as a carte blanche to drink more than usual but I had made sure he had 2 alcohol free days last week in anticipation.

 

[carolynp]

Such support is wonderful. Yes I turned my alarm off and the release of posting helped me to get back to sleep and I got up at 8.45, but OH slept in until 10 so he was exhausted after Easter socialising. He regards social occasions as a care blanche to drink more than usual but I had made sure he had 2 alcohol free days last week in anticipation.

I’m so pleased you got back to sleep! Well done!

 

[imsoblue]

Would she still be willing to be a sitter, but just not do transport?

Yes, we did discuss her coming back to just sit. I had to weigh the decision of needing someone to get him to physical therapy, dentist, haircuts, etc against having Sitter #1. We will see how compatible Sitter #2 turns out to be. He was awake before I left for work this morning proclaiming he wants to interview the new sitter today. I told him it was his sister coming today and I didn't think she needed an interview. He is indicating he doesn't want a sitter again so here comes another struggle.Everything is a struggle and an argument. I like the cat herding story. Yep, that's what got to me about Sitter #1 leaving. Just when things got straight, they went all crooked again.
In 15 minutes I have my support group meeting. Hope my heart will stop hurting for that hour. It needs a rest from the constant pounding.

 

[carolynp]

H

Yes, we did discuss her coming back to just sit. I had to weigh the decision of needing someone to get him to physical therapy, dentist, haircuts, etc against having Sitter #1. We will see how compatible Sitter #2 turns out to be. He was awake before I left for work this morning proclaiming he wants to interview the new sitter today. I told him it was his sister coming today and I didn't think she needed an interview. He is indicating he doesn't want a sitter again so here comes another struggle.Everything is a struggle and an argument. I like the cat herding story. Yep, that's what got to me about Sitter #1 leaving. Just when things got straight, they went all crooked again.
In 15 minutes I have my support group meeting. Hope my heart will stop hurting for that hour. It needs a rest from the constant pounding.

Hi @imsoblue I’ve just gone back over your posts since you joined and I wanted to say my own personal welcome, as a new member also. I really feel for you with the drama on so many fronts and then the necessary decision not to send the updates to that daughter of his when you get such a distressing, indeed agonising response.

My OH has FTD and his sister kept instructing me long distance to take him off his heart meds as she was sure they were causing his confusion. It was so upsetting. Denial is a wonderful - if psychologically harmful, in the longer term - defence for the person who gets to do the denying, but very unhelpful for the person on the receiving end. Thus it is with your stepdaughter. You have to protect yourself from this nonsense and have chosen wisely to do so.

I think it’s very hard when all one wants as the carer is some recognition, and to be reassured you’re doing a good job - and all one gets is advice, involving more work and more stress!

One poster was told to start preparing five to six small meals per day for her PWD refusing food! Well meant I suppose - but honestly! I find it hard enough doing one main meal plus supervising the rest, the meds, the skin cream for the blood cancer ... and my OH is ambulatory and well!

I’m wondering how your support group went? And I’m a bit concerned about your mention of your heartache: you mean this spiritually and emotionally, not physically, I am assuming? Still awful - but not a health threat directly, at least?

All the best, Carolyn.

 

[imsoblue]

H


Hi @imsoblue I’ve just gone back over your posts since you joined and I wanted to say my own personal welcome, as a new member also. I really feel for you with the drama on so many fronts and then the necessary decision not to send the updates to that daughter of his when you get such a distressing, indeed agonising response.

My OH has FTD and his sister kept instructing me long distance to take him off his heart meds as she was sure they were causing his confusion. It was so upsetting. Denial is a wonderful - if psychologically harmful, in the longer term - defence for the person who gets to do the denying, but very unhelpful for the person on the receiving end. Thus it is with your stepdaughter. You have to protect yourself from this nonsense and have chosen wisely to do so.

I think it’s very hard when all one wants as the carer is some recognition, and to be reassured you’re doing a good job - and all one gets is advice, involving more work and more stress!

One poster was told to start preparing five to six small meals per day for her PWD refusing food! Well meant I suppose - but honestly! I find it hard enough doing one main meal plus supervising the rest, the meds, the skin cream for the blood cancer ... and my OH is ambulatory and well!

I’m wondering how your support group went? And I’m a bit concerned about your mention of your heartache: you mean this spiritually and emotionally, not physically, I am assuming? Still awful - but not a health threat directly, at least?

All the best, Carolyn.

My heartache is spiritual and emotional. However, I do feel like it will pound out of my chest sometimes. My doctor gave me some anti-anxiety pills but knowing they're in my purse just in case I need them is keeping me strong. I'm trying to stay healthy.
You are so right. I need some reassurance. There's a book entitled "How Full is Your Bucket." One exact quote from the book is: Each of us has an invisible bucket. It is constantly emptied or filled, depending on what others say or do to us. When our bucket is full, we feel great. When it's empty, we feel awful.
As a carer, I've been filling OH bucket. He cannot fill mine. I can accept that. But additional dipping into my bucket is leaving my bucket empty and me feeling awful.
I looked back into my blogs that I wrote a few months ago and noticed that one time I called his daughter after she visited with her dad and I asked how she thought he was. Her answer? "Perfect." Oh, how I wish he were perfect. Am I imagining all those crazy things he says and does? Is it me? There's no way he's perfect. Her desire for him to be perfect is the driving force for her to put him into a seven day rehab hospital. She also complained because I didn't tell her he got in his car, started it, and threatened to drive away if I didn't take him to the golf course. I photographed him in the car and threatened him that I would send the photo to his daughters. He got out so I kept that to myself. When I told her later she said, "You need to tell us when things like that happen," she said. But when I do she defends his actions, making it out again to me MY problem.
My support group has heard about this drama I endure with the daughter and have been a tremendous help. Your post is also comforting. I needed a shoulder to lean and cry on when this started and I mistakenly thought it would be her since she's the only one who has shown any interest in his health. I was wrong. However, I will lean elsewhere thanks to TP.

 

[carolynp]

My heartache is spiritual and emotional. However, I do feel like it will pound out of my chest sometimes. My doctor gave me some anti-anxiety pills but knowing they're in my purse just in case I need them is keeping me strong. I'm trying to stay healthy.
You are so right. I need some reassurance. There's a book entitled "How Full is Your Bucket." One exact quote from the book is: Each of us has an invisible bucket. It is constantly emptied or filled, depending on what others say or do to us. When our bucket is full, we feel great. When it's empty, we feel awful.
As a carer, I've been filling OH bucket. He cannot fill mine. I can accept that. But additional dipping into my bucket is leaving my bucket empty and me feeling awful.
I looked back into my blogs that I wrote a few months ago and noticed that one time I called his daughter after she visited with her dad and I asked how she thought he was. Her answer? "Perfect." Oh, how I wish he were perfect. Am I imagining all those crazy things he says and does? Is it me? There's no way he's perfect. Her desire for him to be perfect is the driving force for her to put him into a seven day rehab hospital. She also complained because I didn't tell her he got in his car, started it, and threatened to drive away if I didn't take him to the golf course. I photographed him in the car and threatened him that I would send the photo to his daughters. He got out so I kept that to myself. When I told her later she said, "You need to tell us when things like that happen," she said. But when I do she defends his actions, making it out again to me MY problem.
My support group has heard about this drama I endure with the daughter and have been a tremendous help. Your post is also comforting. I needed a shoulder to lean and cry on when this started and I mistakenly thought it would be her since she's the only one who has shown any interest in his health. I was wrong. However, I will lean elsewhere thanks to TP.

Yes: that’s it. Lean elsewhere! It’s what I am aiming at also. Choosing carefully out of grim experience who best to unburden myself to.

When I had extreme difficulty caring for disabled son, and thank goodness got myself to GP when I was unable to stop crying, she had me draw a water tank on the same principle as your book. And mine was of course completely dry. Antidepressants saved me that time. But thank you for reminding me of the concept because it’s such a useful one now I am back in carer role. With my boy, I slowly developed the image of a whole row of tanks to keep in reserve, all linked by a pipe to The One that must never get empty again.

Self doubt seems, according to other posters also, to be part of the burden of dementia care. Every time my OH seems ok, or someone like my sister in law kindly tells me she can’t detect anything wrong, I am thrown back into the same morass of doubt that nearly drowned me in the 2-3 years prior to taking him to GP and getting diagnosis. My therapist has got me to limit contact with his sister. She also denied for YEARS that there was anything wrong with our son, and influenced my in-laws thus to blame me for worrying needlessly, rather than offering the help which at that time I so desperately needed. And they all, in combination, delayed my husband’s process of acceptance by years also.

Whatever is their psychological motivation, these unaware, or wilfully blinkered, individuals are extremely undermining in the situation in which we find ourselves and as best we can we must limit our exposure. Easier said than done, I know; and it’s doubly awful that this is the daughter of whom you justly had high hopes.

Very best of luck. Carolyn. xxx

 

[imsoblue]

Yes: that’s it. Lean elsewhere! It’s what I am aiming at also. Choosing carefully out of grim experience who best to unburden myself to.

When I had extreme difficulty caring for disabled son, and thank goodness got myself to GP when I was unable to stop crying, she had me draw a water tank on the same principle as your book. And mine was of course completely dry. Antidepressants saved me that time. But thank you for reminding me of the concept because it’s such a useful one now I am back in carer role. With my boy, I slowly developed the image of a whole row of tanks to keep in reserve, all linked by a pipe to The One that must never get empty again.

Self doubt seems, according to other posters also, to be part of the burden of dementia care. Every time my OH seems ok, or someone like my sister in law kindly tells me she can’t detect anything wrong, I am thrown back into the same morass of doubt that nearly drowned me in the 2-3 years prior to taking him to GP and getting diagnosis. My therapist has got me to limit contact with his sister. She also denied for YEARS that there was anything wrong with our son, and influenced my in-laws thus to blame me for worrying needlessly, rather than offering the help which at that time I so desperately needed. And they all, in combination, delayed my husband’s process of acceptance by years also.

Whatever is their psychological motivation, these unaware, or wilfully blinkered, individuals are extremely undermining in the situation in which we find ourselves and as best we can we must limit our exposure. Easier said than done, I know; and it’s doubly awful that this is the daughter of whom you justly had high hopes.

Very best of luck. Carolyn. xxx

Thanks @carolynp Having someone in the same boat is comforting. I took OH to a therapist so she could help alleviate some of his negativism. Her role was to help him realize what he couldn't do anymore (golf) and find something he could do. Her suggestion was an indoor putting path down the hallway in our house. He was not happy with that. He didn't even hold back, telling her if he can't play golf the right way, he just won't play. Well, then just sit there and do nothing. She made other suggestions. She was kind and sweet and has worked with dementia patients for 40 years. He was so unreceptive and against everything she said, including, be nice to your carer. I went back to her by myself for 2 hours and had a good cry. When I told his daughter how I tried to get him some therapy her response was angry: "that was just another person telling him what he COULDN'T do." Yep, that's why I hired her! I needed another voice to tell him you cannot drive, you cannot apply for jobs (especially when you need your wife to fill out the application!), and you can be happy doing other things.

 

[canary]

When I told his daughter how I tried to get him some therapy her response was angry: "that was just another person telling him what he COULDN'T do." Yep, that's why I hired her! I needed another voice to tell him you cannot drive, you cannot apply for jobs (especially when you need your wife to fill out the application!), and you can be happy doing other things.

Its difficult. Generally his daughter is right, its best not to draw attention to the things he cannot do, but that doesnt mean that you have to go along with everything he wants. I must say, I havent heard of therapy working for PWDs - it certainly didnt work with my OH when they thought he was just depressed. IMO a better way is to just not enable him to do things, or use "love lies". When OH wants to do something he is no longer able to do I just make some non-committal noise and dont help him. If he insists that I do I say "yes, Ill do it tomorrow" then accidentally lose the form or whatever he wants me to sort out. Usually if I distract him and hide the evidence, out of sight is truly out of mind.

Instead of telling him to do something else instead of something he cant do now, just introduce the new thing without any comment. OH can no longer do gardening or DIY, but I have introduced birdwatching. We can go out to a nature reserve and have a nice afternoon, but we can also watch the birds in the garden that come down to feeders. Armed with a cheap set of binoculars and a bird book he can spend hours in the conservatory and he has also made it his job to fill up the feeders every day. Im not saying that you should necessarily take up birdwatching too, but I thought I would say what I did to give you some inspiration

 

[Grahamstown]

Donepezil, alcohol and leaving him alone, are my preoccupations this evening. Tomorrow we see the GP to discuss the assessment report and consider the recommendation to start Donepezil. Tonight he had a pint of bitter because I agreed to go to the pub with him. We do love going there because the food is so good but once a week at the most is enough for me not every evening. We discussed the forthcoming GP visit, he doesn’t know why we are going because he doesn’t have memory problems... apparently. I have discovered a new bottle of rosé opened which he has drunk from the bottle. So I am worried about the drug because alcohol is definitely a forbidden thing, and I am worried about leaving him alone much at all. He said for the first time that he was lonely and didn’t know what to do when he got home after lunch and I wasn’t back. I got home shortly after him. I am looking up getting an ‘adult’ sitter for times when I have to be out at a vulnerable time.

 

[imsoblue]

Its difficult. Generally his daughter is right, its best not to draw attention to the things he cannot do, but that doesnt mean that you have to go along with everything he wants. I must say, I havent heard of therapy working for PWDs - it certainly didnt work with my OH when they thought he was just depressed. IMO a better way is to just not enable him to do things, or use "love lies". When OH wants to do something he is no longer able to do I just make some non-committal noise and dont help him. If he insists that I do I say "yes, Ill do it tomorrow" then accidentally lose the form or whatever he wants me to sort out. Usually if I distract him and hide the evidence, out of sight is truly out of mind.

Instead of telling him to do something else instead of something he cant do now, just introduce the new thing without any comment. OH can no longer do gardening or DIY, but I have introduced birdwatching. We can go out to a nature reserve and have a nice afternoon, but we can also watch the birds in the garden that come down to feeders. Armed with a cheap set of binoculars and a bird book he can spend hours in the conservatory and he has also made it his job to fill up the feeders every day. Im not saying that you should necessarily take up birdwatching too, but I thought I would say what I did to give you some inspiration

You are correct about the "therapy." At his diagnosis meeting, the neuropsychologist said "talk therapy" was certainly out of the question because he wouldn't remember what was said from week to week. However, he suggested "behavioral activation" which takes the negative events (things you cannot do) and suggests positive, rewarding behaviors that the person is able to do. The therapist didn't just state what he couldn't and shouldn't do without offering better alternatives. He would not listen to any alternative. He wants to do what he wants to do and if he can't, then he wants me to do it for him.
As one of my friends stated "he's too smart right now" to get away with many "love lies." He not distractible yet.
I am so glad you mentioned a new thing to do. I offered to buy him a paint set. "No, don't waste your money," he said. But, I think I will anyway. His hands don't work real well but it might be a good hobby for him. I'll tell him to paint a golf course! Thanks @canary.

 

[canary]

He wants to do what he wants to do

Oh yes, I know that one. OH has lost empathy and is now unable to see anything from anyone elses viewpoint apart from his own. As his memory deteriorates he can no longer remember the past or envision the future, so he is living more and more in the now. His world is shrinking so that now he can only see his own needs, desires and wants. He wants what he wants and he wants it now (sigh)