My husband, 67 has diabetes type 1, parkinsons and dementia. We were given the runaround for several years, symptoms blamed on diabetes. PD diagnosed early 2021, doctor nearly killed him with medication contraindicated for diabetes. Then due to Lockdowns no follow up or support for a couple of years. Never warned of prognoses, outcomes etc. He was increasingly angry, paranoid and gaslighting me… Dementia diagnosis September 2023. Much much calmer. Insulin changed September 2023. I had to take over jabs, calculations, meal planning. You try making a low carb (diabetes) low protein (PD) meal every single time. No support nowhere just got pointed round in circles. He began to eat and jab indiscriminately. April 2024 I finally got him into hospital, relinquished medical care. I thought they’d do better. I thought they’d put him in a home. Until then I’d been told there was no other support! Hospital couldn’t manage all 3 conditions either. Came out June with permanent community nurse jabs 2x day NHS free forever, and 6 weeks support for meds until systems, social worker and private carers in place. Community nurses just jab him, do not adjust according to sugars, no advice and it’s up to me for 16 hours a day. 999 won’t come unless unconscious, 111 not at all, hospital out of hours advice Monday to Friday 9 to 4…week 5 back in hospital, blood sugars out of control, went even higher while being treated! Now been told at 5pm Friday I have to attend a Best Interests Meeting, no date and nobody to speak to, for temp to permanent nursing home place. He’s 67…so is Tom Hanks, to put it in perspective. However awkward my husband is or was due to his illnesses, a nursing home is not the right place yet. So
A manifesto for my husband.
My husband has a brain disease. He is not mentally ill.
He also has diabetes type 1 and Parkinsons disease. These conditions all fight each other. OH’s body and mind are their unwilling battleground.
OH still knows who he is, who other people are, and where he is.
He has increasing problems using the right words and making conversation, and is frustrated by this.
He still knows he went potholing, skydiving, hill climbing, and motorcycled and camped all over the UK and France.
He knows he was part of a quality control project for the principal letter and postal delivery firm in the UK and travelled all over the UK and to Europe for this.
He knows he won an award for this so we had premium seats for the Opening Ceremony of the London Olympics 2012. We were a few yards from the music stage where Paul McCartney performed, and just along from retired Olympians. He knows all that.
(So do I, I was there too. Experience of a Lifetime thanks to my husband’s hard work.)
He knows he completed several London and other Marathons.
He knows he built the Lotus Roger Moore James Bond stunt cars and helped develop the pre production De Lorean
He knows he took cars for a spin round the track at Lotus on a regular basis. Test drives? No, just for the hell of it. What a way to cheer up a working day. He still knows all this.
He knows he has a degree ion Sociology, Government and Politics. He knows he stood as an independent candidate for MP three times.
He knows he’s been a DJ and radio broadcaster.
OH has successfully built, programmed and refurbished an awful lot of computers. He knows all that.
During his previous stay in hospital, the staff all thought he was delusional, until I backed him up.
My husband’s working life portfolio includes the James Bond and Back to the Future and Olympics 2012 DVDs . He knows that.
I know that.
Everyone can see and know what he has achieved and still remembers.
If my OH is confined to a nursing home against his will, that will be a cruel and unusual punishment for a mind that has achieved so much and is still cognisant of his achievements.
A nursing home is not the place for a mind like that.
A nursing home would be a torture chamber.
He should come home so we can resume the process of helping him adapt and survive
Wow Alisongs, your husband has had an amazing life.
I totally understand your situation and cannot sympathize enough, it must be so incredibly hard seeing him like this after the glorious life the two of you have led and I can totally understand what you have written.
However that being said it is so obvious the strain you are under and what it is doing to you and the fact that you sound virtually burned out. How much longer can you continue like this?
Perhaps, and I know you are not going to like this, but it would be better for the both of you if he was in the care of a nursing home.
I don’t know how far it is away from where you live, but nothing would stop you going to visit him on a daily/every two day basis and just sitting and talking. I am sure there are also many things that he could do to keep him occupied and keep his mind active.
Hello Alisongs
I was in your position approximately 4 years ago and insisted on bringing my husband home. I have had to fight to get him the best possible care given his complex needs.
It can be so frustrating having to explain to health care staff that the person they see is not the person he is. True professionals should be able to see through the veil of dementia. There is the distinct possibility of him being in delirium from trauma and mismanagement of his complex needs.
You are right in thinking that home is the place for your husband to relax sufficiently to regain some of his cognition.
My husband still has ptsd from his prolonged hospital stay and has recently been assessed as not even suitable for hospice care.
Care homes can be a convenient place to move patients out of hospital and free up beds. However It is not always in the best interests of the patient. One of the major symptoms of Parkinson’s dementia is lack of orientation. A further move to a care home would exacerbate this…
I have been able to do this with the support of family who are nhs professionals. Even so we have still had to fight hard to get the best possible care. Additionally our cottage lent itself to easy conversion.
Not everyone will have the level of support from family and friends that I am so fortunate to have.
If you don t have CHC funding this needs to be addressed immediately. Getting this funding can be very difficult. Hopefully you have someone who can guide you through this.
I salute your fighting spirit and your determination to do the best for your husband. Many people find this real love and determination to do the best you can for your husband challenging and will try to undermine you. Don’t let them.
The NHS framework for CHC funding states that cost should not be a determining factor when assessing your husbands care needs . Current thinking is the best place for people with Parkinson’s is home. However,
for many it is simply not possible to stay at home and a care home is the only solution. However you should not have to fight to bring him home if it is the right thing for you to do.
As your husbands main carer you will be under tremendous pressure not just from dealing with his care needs but almost just as much, dealing with the nhs, carers and all the ancillary needs.
For this move to be successful you and your mental health are the priority. If you break everything else comes toppling down. Take time out whenever you can. See if you can organise short breaks away with care for your husband . I have regularly gone on retreat .where I can find clarity of thought.
I understand all of this may feel hugely overwhelming for you at the moment. There are various agencies such as carers Uk who will support you and have various options for enabling you to have a break. Additionally Age Uk are very good. Plus you can always vent on the forum.
Finally my husband has had Parkinson’s for twenty years now and has had the misfortune to have had two major traumas which required stays in ITU.
and a prolonged hospital stay.
Despite everything we have been through and his much changed state both physically and mentally my determination to keep him at home to the end remain. He will not go to hospital again whatever happens. Love does not change when it alteration finds.
Please feel free to message me if you like.
Much love to you
Hello Alisongs
I am sorry I should have thought of this before now (although you may know of them) perhaps they can be in your corner so to speak. It can’t do any harm to speak to them.
Tot
I can’t vouch for them but I also found these
https://www.independentadvocacy.org/
https://www.independentadvocacy.org/what-is-advocacy/private-advocacy/
I am sorry to hear about your husband’s health problems. His combination of conditions can often be difficult to manage.
Generally dementia presents with a loss of short-term memory so it is quite understandable that he remembers a lot of things from his past.
I have diabetes (type 2) and PD and have never had an issue with eating protein. Has his diabetes team considered Continuous Glucose Monitoring? This should help him to achieve a better blood glucose control.
Why did your husband start eating and taking his insulin indiscriminately? Does he make the decisions on those issues? Do you have a power of attorney for your husband’s health and care?
Regards
Doug
DISTRESSING READING BUT NECESSARY WARNINGS
Further to my post I regret to report to and warn you all.
September 2023 diagnosis of mild cognitive decline, followed by dementia nurse quarterly visits to check and optimise the Rivastigmine dosage. 12mg maximum daily dose achieved Spring 2024. Signed off. There are NO hospital checkups in England ( like there are for his Parkinsons and diabetes type 1) Rivastigmine is supposed to help preserve memory. Not at all in our case. Deterioration has been frighteningly rapid and we can’t cope. NHS forced him into a nursing home June 2024. Nursing home also out of their depth, 3 complex conditions have resulted in medical, dietary and safeguarding breach issues being raised. He is just totally confused, cannot read, write, or understand the TV. Conversation now impossible. His comprehension is almost gone. Responds either Yes or No or not at all, or the response is not relevant or descends into gobbledegook. Worse still, Social Services departments will not liaise with each other or keep the next of kin informed, only asking for money and accessing financial and pension information of next of kin without authority and illegally. NHS, Social Services admin staff and nursing home staff will lie, mislead and obfuscate and shift blame to family and patient to explain away the misdeeds you find out. So dreadfully secretive it’s like 1984 or Animal Farm or a one party state. Needed a psychiatrist, an assessor and now an independent advocate just to pursue Deprivation of Liberty Safeguards legislation.
so husband cannot leave nursing home by law. I cannot be allowed to be party to any of the interviews, reports or follow up to come. There are about 10 Social services staff involved so far and they are undermining my freedoms, rights and obligations as former sole carer (until June), wife and next of kin and joint house owner. I have to stay in a house we were hoping to sell in retirement as if I sell, Social services will take half to pay for care. We have to hand over half our savings and all of his pension. If you’ve been warned of dementia risk and we were not (Parkinsons diagnosis 2021). Get Health and Fincial Powers of Attorney and Wills and separate bank accounts in place pronto! Any spare cash should be invested in the unaffected person’s name.
Only a year from dementia diagnosis in September 2023. In September 2024, I am not a wife, widow, single or divorced and Social Services control every aspect of both our lives.
Luckily his social worker has her own mind and opinions, sees her job as supporting us both, and not necessarily bending to Social Services departmental whips and diktats. Do not ignore Any warning of dementia. Act now to keep some control.
Only when my much loved husband is dead will we have the peace and freedom we crave and deserve. Hopefully the rapid decline means that won’t be long. He’s only just 68, I’m just 65.
Marital and legal and kinship bonds, rights and obligations are s**t under the jack boot of Social Services.
PS He only has NHS FNC funding for the diabetes which is swallowed up by the nursing home, the care fee is on top. I have just applied for Attendance Allowance as he can have this as NHS CHC has been completely disallowed. (Not surprised as the diagnostic questions exclude the most pertinent, debilitating symptoms.)
I’ve engaged a specialist solicitor who will assume guardianship under the Court of Protection. Her firm is pre approved so it’s just a wait for the application to go through. Her guardianship should abort any attempts by Social Services or the ‘independent’ DOLS advocate engaged by Social Services (who only reports to the DOLS team) to undermine me further and object to my guardianship and so take over completely via the Court of Protection.