Not Sure What To Do/How to Cope

[northumbrian_k]

Whilst I admire the resolve of anyone who continues to provide care at home I do wonder for how long this is sustainable and if it is in the best interests of both the carer and the person they care for.

My personal experience is of inability to give my wife the level of 24 hour care that she deserved. It was more than one person could manage even - in my view - with carers coming in several times a day. Deciding to look at care homes was hard. The prospect of permanent residential care and choice of care home were made easier by her having sufficient assets to be self-funding.

Finding the best care for her growing needs was my primary focus. The idea of compromising on her care to protect the inheritance of her son and granddaughter was never an option, nor would they have wanted me to do so.

Freedom from the stress of caring full time and knowing that she is safe and cared for has helped me enormously. It has also enabled a pale version of our relationship as husband and wife to re-emerge out of the fog of dementia.

Everyone's circumstances are different and only those directly involved are able to decide what they think is best. There are no easy options.

 

[Blondie61]

Whilst I admire the resolve of anyone who continues to provide care at home I do wonder for how long this is sustainable and if it is in the best interests of both the carer and the person they care for.

My personal experience is of inability to give my wife the level of 24 hour care that she deserved. It was more than one person could manage even - in my view - with carers coming in several times a day. Deciding to look at care homes was hard. The prospect of permanent residential care and choice of care home were made easier by her having sufficient assets to be self-funding. Finding the best care for her growing needs was my primary focus.
The idea of compromising on her care to protect the inheritance of her son and granddaughter was never an option, nor would they have wanted me to do so.

Everyone's circumstances are different and only those directly involved are able to decide what they think is best. There are no easy options.

And obviously neither do my mum’s grandchildren! If I spoke to them and said I’d decided to put mum in a care home, they would back me 100%! Currently I’m coping - there will come a time when I can’t and the decision will be made. Look, this thread has moved away from its original theme to one bordering on one where I’m seen to be uncaring and money-minded! My fault I guess for being so honest in a public forum but I think we should just leave things here. Thank you to everyone who made positive contributions x

 

[Shedrech]

gosh @Blondie61 I thought that care companies had moved to longer visits, as others have mentioned .... maybe it's a sign of the pressure they are under ... I hope you manage to arrange more time as that wil help all round

I notice that one of the meds your mum is taking is Risperidone ... I know dad took that when his behaviour was challenging, to help him settle ... maybe it's worth asking her GP for a meds review, certainly mentioning the apathy you see, which may be some depression, though it may be that she is exhausted from her hospital stay

my dad did become less engaged with his environment ... I took it that he had to use so much energy to make some sense of his world that he had little left for 'social' stuff .... I pottered around him and either chatted away not expecting him to join in (lots of statements rather than questions, or closed questions so he only needed to say no or smile if he wanted to respond) or sat with him watching his favourite tv (I programmed it so it automatically switched channels and used Youtube to show his beloved jazz) or listening to music, which he seemed to enjoy .... I told myself that I couldn't entertain or engage him all the time, and that took pressure off me, so when he did show interest it was a bonus and I seized that moment to look at bird/local history books or photos (though he did find it hard leter on to focus on images, so often said he couldn't see them)

 

[Jaded'n'faded]

It's pretty poor that your phamacist refuses to do blister packs for you, especially as he's indicated he already does this for others. I would take him to task over this and ask him why other patients get their meds in blister packs and why your mum is 'not important enough'. He needs to justify that - people with dementia need all the help they can get with meds. If you don't get anywhere, I'd have a word with the GP or practice manager and make a complaint.

Just to add, the whole business of paying for care and inheritance is much discussed here and opinions vary from one end of the spectrum to the other! No one should be judgemental - we all have totally different circumstances, relationships, etc. Take a look at my thread on Protecting Assets...! (Spoiler alert: I'm not getting very far....yet!)

 

[Melles Belles]

@Blondie61 definitely try contacting your Gp regarding switching to blister packs.

 

[Scarlet Lady]

@Blondie61, I appreciate you feeling a little ‘got at’ in posts on this thread. The questions surrounding residential care can be challenging and emotive. I think it is entirely human to want to protect the assets that the PWD has probably worked hard all their life to acquire. People make wills leaving whatever they have at the end of their life to those they love in the hope that it will benefit the lives of future generations. They do not usually stipulate that in order to be cared for in later life, everything they own must be sold to enhance the fortunes of residential care corporations. And that is exactly what happens. Make no mistake, you are not paying upwards of £1200 to £1500 per week for the care your loved one will get from dedicated people on minimum wage, or even the facilities provided by the home. You are simply lining the pockets of the home owners. I feel like that is a moral conundrum in itself and I don’t feel it is at all selfish that you wish to avoid this happening.

Of course, as @northumbrian_k said, it may be that in time it becomes impossible to avoid, but in the meantime, I think you may do well with decent agency care. As your mum is self-funding, the agencies themselves will do a needs assessment and discuss what kind of package she needs. The agency I use for my aunt will do minimum thirty minute calls, but in my experience that’s not long enough, especially if something unexpected happens. An hour (however many times a day you feel is required) may be enough. If you are unsure who to contact, your local Authority will provide a list of agencies local to you. You may also have word of mouth recommendations. The agency will work closely with you so changes can be made with minimum fuss. I do find it irritating that they aren’t allowed to administer anything without a prescription, but sadly, these are the NICE guidelines in England. The other downside is you rarely get a small team of people, regardless of what is promised. That’s the nature of an industry with a high turnover of staff. Standards of care can be a little patchy, but you learn to manage your expectations. My first big learning curve on the care journey was ‘don’t sweat the small stuff’. Not everything will be done as you would do it, and that applies to residential care as well. The only difference is that with a care home you don’t always see what goes on!
Sorry that this is a long post and I may have gone off topic. I wish you all the best in sorting out the best care for your mum.

 

[Blondie61]

@Blondie61, I appreciate you feeling a little ‘got at’ in posts on this thread. The questions surrounding residential care can be challenging and emotive. I think it is entirely human to want to protect the assets that the PWD has probably worked hard all their life to acquire. People make wills leaving whatever they have at the end of their life to those they love in the hope that it will benefit the lives of future generations. They do not usually stipulate that in order to be cared for in later life, everything they own must be sold to enhance the fortunes of residential care corporations. And that is exactly what happens. Make no mistake, you are not paying upwards of £1200 to £1500 per week for the care your loved one will get from dedicated people on minimum wage, or even the facilities provided by the home. You are simply lining the pockets of the home owners. I feel like that is a moral conundrum in itself and I don’t feel it is at all selfish that you wish to avoid this happening.

Of course, as @northumbrian_k said, it may be that in time it becomes impossible to avoid, but in the meantime, I think you may do well with decent agency care. As your mum is self-funding, the agencies themselves will do a needs assessment and discuss what kind of package she needs. The agency I use for my aunt will do minimum thirty minute calls, but in my experience that’s not long enough, especially if something unexpected happens. An hour (however many times a day you feel is required) may be enough. If you are unsure who to contact, your local Authority will provide a list of agencies local to you. You may also have word of mouth recommendations. The agency will work closely with you so changes can be made with minimum fuss. I do find it irritating that they aren’t allowed to administer anything without a prescription, but sadly, these are the NICE guidelines in England. The other downside is you rarely get a small team of people, regardless of what is promised. That’s the nature of an industry with a high turnover of staff. Standards of care can be a little patchy, but you learn to manage your expectations. My first big learning curve on the care journey was ‘don’t sweat the small stuff’. Not everything will be done as you would do it, and that applies to residential care as well. The only difference is that with a care home you don’t always see what goes on!
Sorry that this is a long post and I may have gone off topic. I wish you all the best in sorting out the best care for your mum.

Thank you - I really appreciate your thoughtful words (and agree 100% with your views on the profits of carehome owners). Thank you for taking the time to reply.

 

[Sirena]

Sorry to hear about your situation with your mother.

I used a privately funded agency for my mother's at-home care and they were brilliant. They would literally do anything I asked - preparing meals, personal care like washing and dressing, medication, shopping, cleaning, companionship, accompanying my mother to medical appointments.

Of course this does all take time and you have to be prepared to pay for that. My mother lived alone so she had carers in for four hours a day (9-1) then I subsequently added another hour in the evening. Giving them a generous chunk of time mean they had time to complete all the necessary tasks.

In terms of trying to avoid a care home... please don't feel 'got at'. You are currently dealing with what's in front of you - what she needs now. Longer term I suspect at-home care will not be feasible. My mother was absolutely fine with agency care for 18 months but there then came a point when it was not safe for her to be left alone, so a care home was the only option. She's now been there for over 3 years. And yes, the money runs away like water.

 

[Lynmax]

As you have explained that your mum will be self funded when the current care package ends, could you employ a care agency for a longer visit as well? I mean continue with the current carers but have the new agency as often and as long as you feel necessary to do everything your mum needs.

My mum had one care visit for two hours a day to cook her a meal, give her medication ( she only had one table once a day), help her have a shower and provide companionship by sitting with her while she ate, going for a short walk or watching tv together. These were not all done every visit, if mum had a shower, there might not be time for a walk for example.

We had just discussed increasing the visits to three visits a day, one hour in the morning for personal care and breakfast, then the two hours in the middle of the day with a later visit in the evening to encourage mum to go to bed. Unfortunately mum then had a nasty fall and after four weeks in hospital we realised that it was no longer safe for her to be at home on her own so she was discharged to a care home.

 

[Ridpathnan]

Mum was diagnosed with Alzheimer’s in October 2019 although had shown signs for a few years before. She is 89. Last week she was discharged from hospital after a week’s stay, following a fall. She has a 2 week care package in place with visits 3 times a day, but as I’m still administering her medication (Risperidone and Donepizil) twice a day I also prepare her meals when I call in and help her to bathe every other day, so the care visits are achieving little and, if I’m honest, I’m not impressed with what I’ve seen anyway. I’ve approached three local private agencies (mum would be self-funded) to hopefully get a new care package in place, as her ability to function on her own has been severely impacted by the stay in hospital.

However my real problem is my that relationship with her has taken a nose-dive. Quite honestly, she drives me insane - she’s so miserable/quiet/morose - I can’t even describe it properly. She doesn’t initiate conversation anymore, won’t watch TV, doesn’t want me to buy her a newspaper, doesn’t want to eat or drink, has no hobbies or interests anymore - so subsequ spends her day sat in a chair doing nothing! How can I stimulate that amount of apathy?? It’s SO different to how she was even 12 months ago and I’m struggling with it all and would love to hear if anyone else has also experienced this with a loved one? I have no siblings so feel very alone with all the arrangements etc, although my husband helps where he can.

my situation is similar but with my husband who is still capable enough to live at home with me and is only 74.....nose dive sums it up for me...I am struggling to keep patient and see my husband as he was, communication on most levels are a battlefield, i am so frustrated that he does not take anything in thats said to him and does not remember things or conversations from one day to the other.
My marriage is as good as over......I am so sad for him and for me .

 

[Blondie61]

my situation is similar but with my husband who is still capable enough to live at home with me and is only 74.....nose dive sums it up for me...I am struggling to keep patient and see my husband as he was, communication on most levels are a battlefield, i am so frustrated that he does not take anything in thats said to him and does not remember things or conversations from one day to the other.
My marriage is as good as over......I am so sad for him and for me .

I’m so sorry Ridpathnan, I can’t imagine how awful it must be to see your husband like this. All I can suggest is you try to salvage as much of your life back as you can (or want to). Can your husband go to a day centre to allow time for you to concentrate on yourself? I’m praying I hear back from my preferred care agency on Monday that they have sufficient capacity to put three visits a day in place for mum, which will free up some much-needed time for me. We must look after ourselves - the latest Alzheimer’s publicity campaign really resonated with me - My dad’s/mum’s/partner’s Alzheimer’s is killing ME - makes you think …. Take care xx

 

[Lherath]

Mum was diagnosed with Alzheimer’s in October 2019 although had shown signs for a few years before. She is 89. Last week she was discharged from hospital after a week’s stay, following a fall. She has a 2 week care package in place with visits 3 times a day, but as I’m still administering her medication (Risperidone and Donepizil) twice a day I also prepare her meals when I call in and help her to bathe every other day, so the care visits are achieving little and, if I’m honest, I’m not impressed with what I’ve seen anyway. I’ve approached three local private agencies (mum would be self-funded) to hopefully get a new care package in place, as her ability to function on her own has been severely impacted by the stay in hospital.

However my real problem is my that relationship with her has taken a nose-dive. Quite honestly, she drives me insane - she’s so miserable/quiet/morose - I can’t even describe it properly. She doesn’t initiate conversation anymore, won’t watch TV, doesn’t want me to buy her a newspaper, doesn’t want to eat or drink, has no hobbies or interests anymore - so subsequ spends her day sat in a chair doing nothing! How can I stimulate that amount of apathy?? It’s SO different to how she was even 12 months ago and I’m struggling with it all and would love to hear if anyone else has also experienced this with a loved one? I have no siblings so feel very alone with all the arrangements etc, although my husband helps where he can.

Oh sweetie! My heart hears you. My mother often states out loud how life isn’t worth living then proceeds to list all the reasons why, including making things up and speculating. The negativity wave that washes over our shared home is catastrophic and difficult to live with. I think it’s major depressive disorder but she won’t go see a doctor. She has other health issues she laments constantly but again… won’t see a physician. I’m like you. I’ve bought things I thought would cheer her up and she seems unaffected by any efforts. I cook her her special diet and shop for healthy things but she binges on sugar and complains of being fat! I suppose we need to think we are truly not here to entertain them all day. I know mum is lonely but makes no effort to get out except to a senior center to walk in circles with the neighbor. That exhausts her. You are not alone! There are so many of us like this. I have a brother who is completely uninvolved and wants nothing to do with us so I too am on my own. Bless you for what you’re doing…?

 

[Lherath]

my situation is similar but with my husband who is still capable enough to live at home with me and is only 74.....nose dive sums it up for me...I am struggling to keep patient and see my husband as he was, communication on most levels are a battlefield, i am so frustrated that he does not take anything in thats said to him and does not remember things or conversations from one day to the other.
My marriage is as good as over......I am so sad for him and for me .

Hi there!
I just found this site today and am so grateful for all of the caregivers who are sharing their stories! My father passed six years ago and I now care for mum, 86. She also does not remember conversations from yesterday and will argue vehemently with me that things were never discussed and I’m trying to ‘make her think she’s crazy.’ I hear her talking in the phone sometimes and the things she is telling people is completely inaccurate. I’m sorry for the lost personality of your husband. I’m seeing the same issues with my mother and I have the deepest compassion and respect for the care you are providing even though you don’t really know him any longer… stay the course! ??

 

[canary]

Did you hear back from the care agency @Blondie61 ?

Hi @Lherath and welcome to Talking Point

 

[Blondie61]

Oh sweetie! My heart hears you. My mother often states out loud how life isn’t worth living then proceeds to list all the reasons why, including making things up and speculating. The negativity wave that washes over our shared home is catastrophic and difficult to live with. I think it’s major depressive disorder but she won’t go see a doctor. She has other health issues she laments constantly but again… won’t see a physician. I’m like you. I’ve bought things I thought would cheer her up and she seems unaffected by any efforts. I cook her her special diet and shop for healthy things but she binges on sugar and complains of being fat! I suppose we need to think we are truly not here to entertain them all day. I know mum is lonely but makes no effort to get out except to a senior center to walk in circles with the neighbor. That exhausts her. You are not alone! There are so many of us like this. I have a brother who is completely uninvolved and wants nothing to do with us so I too am on my own. Bless you for what you’re doing…?

Lherath, thank you so much for your reply. How strange it is that to hear of someone going through the same nightmare somehow brings comfort … we are NOT alone!! Today was the first day of a new, private, care package - three timed visits a day. Very early days but you have to appreciate the little wins, and I’ve felt such a sense of relief today! I wish you luck and am sending a virtual hug - hang on in there, you are doing an amazing job!! ?

 

[Blondie61]

Did you hear back from the care agency @Blondie61 ?

Hi @Lherath and welcome to Talking Point

An update: After continuous back pain for several days I managed to get an emergency x-ray for mum. The results showed she had two fractures of her vertebra, one old, one new. A new GP gave me the news and was surprised I didn’t know of the older fracture as that had been reported following an x-ray two years ago when mum’s original diagnosis of osteoporosis was made. I’d been involved in her care then but the word fracture had never been used. It would also appear there were no x-rays taken when she went into hospital following her recent fall!! Whilst I acknowledge with osteoporosis there’s no guarantee the second fracture happened as a result of the fall, I do think it’s negligent to NOT x-ray an 89 year old patient following a fall.

Carers are however in place three times a day and overall are providing a good level of service so that’s a little win I’m very grateful for …. but overall life’s still extremely hard. Thanks for listening ….