Not Sure What To Do/How to Cope

[Blondie61]

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.

 

[Whisperer]

Dear @Blondie61

Hospital stays can have a bad effect on a PWD. Sometimes given time this can improve with the loved one back home in familiar surroundings.

Can I suggest using an idea I once read on this forum. Try to find a hook to pull your mother out of herself. By that I mean start a conversation on a subject she has interest in or a memory which brings her pleasure. Something she has previously referred to like a trip somewhere or a funny family gathering in the past. Possibly looking at old family photos might find you an idea or just look at them with your mum. Share the experience of say a mug of tea and a cake together.

It might be that none of the above will work or only slowly. Later stage Dementia can be as you report your mum to be, but I suspect the period in a busy hospital is the key factor here, surrounded by noise and very unfamiliar background.

I know it is frustrating but please try and stay patient and calm. Talking with a clear voice, gentle and supportive. Your mum is still in the room just needs some help coming back to you.

No doubt others will have other suggestions. Hope the above can give you some help.

 

[TNJJ]

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.

Hi. My dad is very similar. He is 88.I might get him to talk about his childhood but mainly about travelling and his job, He flicks through newspapers. He has the tv on tennis ( but hates it) so I end up changing it.Dad has gone off some food and I try and tempt him but he takes about a mouthful. Last week the only words I got were “yes”. Then we get the “I can’t do this or I can’t be bothered “. That’s the favourite at the moment.He also dozes a lot . I’ve learnt that I can’t do anything about it so I bring a book. I offer cups of drink etc . After a while I go home. I have no other siblings either. Not a husband. You’re not on your own although it may feel like it sometimes.

 

[Blondie61]

Thank you both for your replies. I will try and do as you say Whisperer and get her talking about something that interested her in the past. TNJJ - thank you for letting me know I’m not alone. I think the worst part of all of this for me is the guilt over my feelings. I’m usually such a sensitive person who would hate to hurt anyone’s feelings but right now, if I could run away from all this and never look back, I would!! Thanks for listening x

 

[Duggies-girl]

@Blondie61 my dad had a 3 week stay in hospital in 2019 with pneumonia. It was hell for him and hell for me, he pulled his canula out on the first night and had to have 2 units of blood, he had delirium and hated me, he had a heart attack followed by a stroke, he also had 3 falls, one each week. It was nightmare and I was visiting twice a day and I still don't think that I have got over the experience. We were called in one night to say good bye but they had to tranquilise dad twice because he was so agitated. It was a horrendous for me and him at the time.

Amazingly he came home and was a very different dad, he even swore which was unheard of before then and he required full time care whereas before he had muddled along with daily help from me.

What I am saying is that a hospital stay really takes it out of someone with dementia and your mum may recover with time, probably not to how she was before the hospital stay but to somewhere in between. My dad could hardly stand when he came home but with a bit of effort from me he soon was able to get around with his frame quite well although he never quite recognised his home anymore.

Like you my husband was my biggest help but sometimes that is not enough. Dad had another year is his own home which was very hard on me and my husband. Your mum may pick up although she is not likely to go back to her old self and you may need more help or ultimately a care home which is not a bad option to be honest.

 

[Blondie61]

@Duggies-girl thank you for sharing your story. Whilst I’m not averse to it, the whole question of a care home for mum is fraught with problems. Basically, mum changed her will a few years ago to include her four grandchildren as well as me (I had, and still have, absolutely no problem with this - we’re a close family). However, two of her grandchildren have financial problems and I would feel so bad watching the house being sold to pay for mum’s care and them losing their inheritance. I‘m therefore hoping her pensions will cover the cost of agency care in the home.

 

[canary]

My OH has been in hospital with a dreaded UTI and since he has come home has had a step down and forgotten a lot of the routine at home.
Your mum may improve a bit as she settles back into her home, but falls, infections, hospital and surgery all do horrible things to cognition. You say she is so different to how she was "even 12 months ago", but a year is a very, very long time in dementia world. The way you are describing her now is typical of later stage dementia when they are unable to initiate any activity by themselves and need someone to prompt and remind them what to do.
Re activities:- talking about things from her earlier days/childhood was something that mum was able to do right up to the end. Try asking things like -what was school like? Did you used to help your mum with the laundry? You may not get a back and forth conversation, but you will probably bet a stream of reminiscence . Activities that interest her may be much simpler things than she would previous have done. Following TV is probably too complex for her now. Try things like balling socks or "sorting" a drawer, buttons or a pack of cards (dont insist that she does it "properly"). I got a swing box for mum and filled it with things like bits of lace, ribbon, elastic, a thimble, pincushion (without pins), a darning mushroom, tape measure, empty cotton reels. childs plastic knitting needles - just dont put in anything sharp! Mum used to root through it and look at all the things regularly.

 

[Kay.D]

It is so difficult. My sister is in a nursing home since age 63. Even at that stage she had lost the ability to have any meaningful conversation. Over 3 years later I just go take her for a walk around the garden and hold her hand and sing songs with her. I drive an hour and a half 3 times a week. It breaks my heart to see her. It usually lasts about 30 mns then she has had enough. Sometimes she cries and it is so hard to comfort her. ?

 

[Rosettastone57]

@Duggies-girl thank you for sharing your story. Whilst I’m not averse to it, the whole question of a care home for mum is fraught with problems. Basically, mum changed her will a few years ago to include her four grandchildren as well as me (I had, and still have, absolutely no problem with this - we’re a close family). However, two of her grandchildren have financial problems and I would feel so bad watching the house being sold to pay for mum’s care and them losing their inheritance. I‘m therefore hoping her pensions will cover the cost of agency care in the home.

If you can manage with carers ,all well and good, but there may come a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You say the whole question with a care home is fraught with difficulty, is this just a case of missing out on inheritance or something else?

 

[Blondie61]

If you can manage with carers ,all well and good, but there may come a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You say the whole question with a care home is fraught with difficulty, is this just a case of missing out on inheritance or something else?

I understand that mum’s needs in the future may well become too great for either me or the Carers to manage but at the moment, if i can get a suitable package in place, I think they are manageable for now. I hope I didn’t come across as money-grabbing - certainly I have no issue with mum going into a care home (although I know it‘s not what she would want, it would certainly make my life far less stressful) but the problem would be how awful I would feel at seeing the inheritance swallowed up in this way. As I said, for two of her grandchildren, the amount they would inherit, whilst not huge, would benefit them enormously. Obviously I won’t see her suffer but for now I’ll do what needs to be done to keep her out of a home.

 

[canary]

When you say "if I can get a suitable care package in place", what do you want them to do?
I am very surprised that the present carers are not bathing your mum, administering medication and preparing simple meals, or is this not what you want them to do?

 

[Blondie61]

If you can manage with carers ,all well and good, but there may come a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You say the whole question with a care home is fraught with difficulty, is this just a case of missing out on inheritance or something else?

I understand that mum’s needs in the future may well become too great for either me or the Carers to manage but at the moment, if i can get a suitable package in place, I think they are manageable for now. I hope I didn’t come across as money-grabbing - certainly I have no issue with mum going into a care home (although I know it‘s not what she would want, it would certainly make my life far less stressful) but the problem would be how awful I would feel at seeing the inheritance swallowed up in this way. As I said, for two of her grandchildren, the amount they would inherit, whilst not huge, would benefit them enormously. Obviously I won’t see her suffer but for now I’ll do what needs to be done to keep her out of a home.

 

[Blondie61]

When you say "if I can get a suitable care package in place", what do you want them to do?
I am very surprised that the present carers are not bathing your mum, administering medication and preparing simple meals, or is this not what you want them to do?

They will only administer medication if it’s in a blister pack. We live in quite a rural village and the local pharmacist has point blank refused my request for this - he’s too overrun with similar requests apparently. The carers at the moment (local authority adult social care) have said they don’t have time to wait while mum has a bath. I feel like I’m hitting a brick wall everywhere I turn. So as I’m going in twice a day to give her her meds, I may as well also do the bath and prepare her evening meal. The carers do prepare her lunch by the way. All rather unsatisfactory at the moment but hopefully it will change

 

[Blondie61]

My OH has been in hospital with a dreaded UTI and since he has come home has had a step down and forgotten a lot of the routine at home.
Your mum may improve a bit as she settles back into her home, but falls, infections, hospital and surgery all do horrible things to cognition. You say she is so different to how she was "even 12 months ago", but a year is a very, very long time in dementia world. The way you are describing her now is typical of later stage dementia when they are unable to initiate any activity by themselves and need someone to prompt and remind them what to do.
Re activities:- talking about things from her earlier days/childhood was something that mum was able to do right up to the end. Try asking things like -what was school like? Did you used to help your mum with the laundry? You may not get a back and forth conversation, but you will probably bet a stream of reminiscence . Activities that interest her may be much simpler things than she would previous have done. Following TV is probably too complex for her now. Try things like balling socks or "sorting" a drawer, buttons or a pack of cards (dont insist that she does it "properly"). I got a swing box for mum and filled it with things like bits of lace, ribbon, elastic, a thimble, pincushion (without pins), a darning mushroom, tape measure, empty cotton reels. childs plastic knitting needles - just dont put in anything sharp! Mum used to root through it and look at all the things regularly.

Some lovely ideas here, thank you, I’m going to try some of them.

 

[Blondie61]

It is so difficult. My sister is in a nursing home since age 63. Even at that stage she had lost the ability to have any meaningful conversation. Over 3 years later I just go take her for a walk around the garden and hold her hand and sing songs with her. I drive an hour and a half 3 times a week. It breaks my heart to see her. It usually lasts about 30 mns then she has had enough. Sometimes she cries and it is so hard to comfort her. ?

My thoughts are with you KayD - 63 is far too young, your poor sister xx

 

[Shedrech]

hi @Blondie61
if there isn't enough time in a visit to bathe your mum, seems that the time needs to be extended ... is that something that is being considered in her care plan
your mum may not have wanted to move into residential care but her needs come first and if you and home carers are finding it tough (for whatever reasons) to provide the care she now needs, then it's unfair on her and hard on you to keep trying to have her at home
her money is hers, to be spent on her and pay for the care she needs .... there's no inheritance until she dies ... it was kind of her to include grandchildren in her will, but they can't expect any particular amount ..... though it may feel difficult for you, because it's tough to see children struggling, you can't hold back on arranging and paying for whatever is needed for her to be looked after satisfactorily
staff in a care home will be used to supporting residents such as your mum, and you will be able to visit as her daughter, rather than to look after her, so your relationship may change

 

[Blondie61]

hi @Blondie61
if there isn't enough time in a visit to bathe your mum, seems that the time needs to be extended ... is that something that is being considered in her care plan
your mum may not have wanted to move into residential care but her needs come first and if you and home carers are finding it tough (for whatever reasons) to provide the care she now needs, then it's unfair on her and hard on you to keep trying to have her at home
her money is hers, to be spent on her and pay for the care she needs .... there's no inheritance until she dies ... it was kind of her to include grandchildren in her will, but they can't expect any particular amount ..... though it may feel difficult for you, because it's tough to see children struggling, you can't hold back on arranging and paying for whatever is needed for her to be looked after satisfactorily
staff in a care home will be used to supporting residents such as your mum, and you will be able to visit as her daughter, rather than to look after her, so your relationship may change

Maybe it’s different in our area to others, but the carers are actually only in mum’s home for approximately 15 mins (20 max) each visit. My initial plan for the private package will be for each visit to be 45-60mins. Obviously I know there will come a time when mum’s needs will only be able to be met by a care/nursing home - all I’m saying is that at the moment, although I COULD go down that road and make my life infinitely easier NOW, I’m going to continue to care for her at home for as long as I can. I’m honestly just trying to do my best for everyone under difficult and challenging circumstances - just like thousands of others I imagine.

 

[Suesue.G.]

I worked for a Care Agency, for a few years after I retired from teaching. I discovered that not all agencies are the same. The one I worked for would not accept Care packages for visits under 1 hour. We had plenty of time to do baths and showers and help dress and prepare meals. We were encouraged to spend time talking to our Service users and to administer time sensitive meds. Our prime aim was to enable people to stay in their own homes as long as possible. I had to give my job up when it became obvious that my OH was suffering from vascular dementia and Alzheimers. If, and when, l can no longer manage on my own, I know what to look for in a Care company. The Carers I worked with were dedicated and supportive.

 

[jennifer1967]

the care agency in our area does the 30 min appt and carers but that also includes travelling in between clients so they dont get travel time but shave it off the visits so not late for the next one

 

[silkiest]

HI @Blondie61, large pharmacy companies are now getting involved with medication and some send the medication through the post, I don't know if they will do this with blister packs but it might be worth investigating so the carers could do more. The agency I use for MIL do not insist on blister packs (which she has for most meds), but everything must be in a box from pharmacy with a label that has prescription details on it. This can be a problem sometimes when all she needs is over the counter treatment ( recently for earwax) ,when I have to ask GP for a prescription for something that is not usually prescribed.
Good luck with finding an agency, I would make yourself a list of all the things you would like them to do and which the local authority carers will not so you know what to ask about when interviewing potential agencies - there seems to be no set standard around a lot of issues.